There are many, many people in our time and culture who are facing the terrible dilemmas that arise when an elderly parent becomes demented, or otherwise incapable of taking good care of herself. It seems that nearly all of my friends (those who are in their 50’s or 60’s) have gone through this, or are going through it right now. Or soon will be. What I consistently hear them say is: “This was the hardest thing I have ever done.” And these are people who have done quite a few very difficult things…
This is a chronicle of how it happened with my own mother. Up until the day I took her to the hospital (June 14, 2008), she was living on her own, in a house with her dog.
Image via WikipediaJune 15, 2008: Mother’s In the Hospital. I took my mother (88 years old) to the hospital yesterday… actually, the ambulance took her. She’s been coughing more, lately, and yesterday the cough sounded a lot worse. And she didn’t seem to know whether she had been taking her medications, or not. She said she had called her oncologist, and that his office told her to go to the emergency room. When I got to her house, she was in her pajamas. Her cough sounded more like a gurgle. I tried to persuade her to get dressed so we could go to the ER… but she just kept saying “wait a minute, wait a minute, just let me lie down for a while” … this went on for half an hour or so…
Eventually I called for an ambulance. Just a few minutes later, we had at least 6 or 7 big firefighter paramedics, with their equipment bags, milling around in her little house. So she retreated to her bedroom, and the bathroom, and began walking around in just her panties, hollering at the guys to “Git! Git out of here!” … Eventually the ambulance guys arrived, and the paramedics left (that was a relief). With much resistance from her, we eventually managed to get clothes on her, get her on the gurney, and to the hospital.
Turns out that her electrolyte levels are really screwed up (causing confusion), and her emphysema is a whole lot worse. They admitted her. Last I heard, around 8pm last night, she was raising hell with the nursing staff (they called me, and asked me to call her and tell her to cooperate; of course, that’s a course of action that’s never been effective, before… but I tried it, anyway).
My mother’s dog, who has never truly been housebroken, is wandering around in my back yard now. The cats are scared, and my dogs are annoyed.
It’s been so hard to watch my mother as she has made an endless, life-long, series of bad decisions, all the while blaming and attacking everyone who has tried to help her… Hearing her complain that she is lonely, and knowing very well why has no friends, why her neighbors avoid her…
When an elderly person is not demented, but refuses or abuses the available resources that could help her live independently and with reasonable comfort… there just doesn’t seem to be anything that can be done to make matters better. It is an utterly heartbreaking situation.
|Image via Wikipedia
My mother had a very rough night at the hospital, Sunday night. The nursing staff had an even rougher night, because my mother was furious about everything. She pulled the IV out of her arm, she hollered, she cursed, she rang her call bell over and over. At 88, very frail, and confused, she is considered a “fall risk,” so they have assigned a tech to sit with her all the time, to help her when she gets up to go to the bathroom, or when she gets up to try to go home. She is very nasty to her tech, of course.
The thing is, this isn’t just her confusion that’s causing this behavior. This is how she generally is, when she isn’t getting her way. The confusion is just making the whole situation worse. Yesterday her oncologist came by. This current hospitalization doesn’t seem, on the surface, related to the lung cancer he has treated her for; but he’s a really good doctor, and one of the only people she trusts. So he came by. She had just come back from a CT scan
of her brain that the other doctor had ordered (still wondering what’s causing the sudden onset of confusion). We looked at the brain images together. I could see that there is some atrophy, but nothing really inconsistent just with being 88 years old; and he said he could see no indications of a mass. He was wondering if her cancer had metastasized to the brain. Cancer can cause the kind of electrolyte imbalances that she has; and electrolyte imbalances can cause confusion. So, the question remains: what’s going on with her, and is it reversible (at least, in the short term)? In other words, can she go home, or not?
My mother’s greatest fear (as she has told me many times, throughout my life) is “being put in the nursing home.” My greatest nightmare is living under the same roof with her. This is going to be so very painful for both of us… Over and over again I am noticing my dread, and naming it, and shifting my attention to whatever is around me. This morning I walked out in the yard with the dogs, and felt the air against my skin. It was cool, and damp, and very pleasant.
Image by sono salvo via FlickrEverything that’s been said about how we become parents to our own parent(s) came alive for me yesterday in my mother’s hospital room. It’s not that I have never done things for her before… but this was the first time I have taken a spoon and fed her, while she was unaware that she was being fed. She wanted the orange sherbet… but when I tried to give her the spoon, she dropped it. She let me put the spoonful of sherbet in her mouth, and ate it. And then when I asked her if she wanted another bite, she nodded, “yes,” and her hand (not holding a spoon) headed upward toward her mouth. And so, at the same time I gently placed another small spoonful into her open mouth, with some more orange sherbet. Her lips closed on the spoon and I withdrew it, and it seemed that she never realized that she was not the one who was putting the sherbet into her own mouth….
The delirium is not clearing up. Sometimes she knows she’s in St. Luke’s Hospital, and sometimes she thinks she’s in a veterinary hospital. She wants to get dressed and put on her shoes and go home; yesterday, she tried to put the phone on her foot. She keeps trying to pull our her IV, and when we stop her, sometimes she kicks or tries to bite. When I left, last night, she was (finally!) asleep, lying crosswise on the bed, her hands strapped into huge mittens (“soft restraints”).
Image via WikipediaWhen you’re in the hospital, you get a bunch of specialists who look at your problem(s) from the perspectives of their various disciplines, and of course that should be a good thing. I suppose that often, it is. But not always. One problem is that the specialists don’t always communicate well with each other, and sometimes they work at cross purposes. We now have at least three, maybe four, different doctors writing orders in my mother’s chart, and even though we now have a hospitalist on the case, there are still other guys ordering stuff that is inconsistent with the approach that the hospitalist is taking, or wants to take.
My mother went into the hospital walking and talking, coughing a lot, and mildly confused. That was Sunday. As of last night, she was unable to stand up, much less walk. She was terribly disoriented, and had no short-term memory. Her speech was very slurred, nearly incoherent. She was keeping her eyes closed most of the time, even when awake, and could not explain why. She wasn’t eating or drinking, and the nursing staff seemed unaware of that, or unconcerned about it, until I repeatedly brought it to their attention. They kept musing about a “pureed diet” order, ignoring the fact that she is refusing to swallow anything. They had unhooked her IV fluids, because she was moving around so much. Yesterday, she was still being given a medication for sedation (Ativan) that was clearly making her mental status worse. I think I finally got the attention of enough of the doctors, yesterday afternoon, to make sure she will get no more Ativan. And the IV was hooked up again when I left, last night.
The various tests so far haven’t shown anything that would be an obvious cause of her delirium (the rapid-onset confusion). The doctors have various ideas, but it’s all really tentative. Maybe it’s metabolic, maybe it’s her meds, maybe it’s several things that have acted together to cause problems in mental functioning.
Today we’ll see if she clears up any.
Image via WikipediaToday my mother sat up in a regular chair, put on her lipstick, and drank some lemonade from a cup. These are all things that seem quite amazing, given what her condition has been, over the past several days…
She isn’t all the way back; she is convinced that there were two very unpleasant men who were sleeping in her room last night, and she is very, very angry about that. And she can’t walk, or stand up, by herself. So… we’ll see what tomorrow brings. The hospitalist thinks she will be “back to baseline” in about two days. I admit to mixed feelings about that, because for my mother, “baseline” is a place from which she creates an enormous amount of chaos and distress, both for herself and for others. But I want her to have her life, for as long as she can and, insofar as possible, on her own terms.
My mother’s favorite song has always been: “Don’t Fence Me In.”
Image via WikipediaMy mother is doing better… but she sure isn’t doing very well. The staff is now looking into nursing home options. I have done quite a bit of crying today. I have also been getting considerably more firm with the staff, when I see things that appear to be going wrong (or going undone) with mother’s care.
Today I was surprised when a speech pathologist arrived in mother’s room. It turns out that her pulmonary doctor was thinking that maybe this ongoing gurgling cough is related to swallowing difficulties. They did some tests. Sure enough, there’s another big problem: her dysphagia is “moderate to severe,” and now she can’t drink liquids unless they have been thickened, and she can’t eat solid foods unless they are already soft, or ground up. No more steak, or chicken. Fish is OK. And mashed potatoes. And I guess overcooked vegetables would be just fine. Probably soup, too.
Next, the hospitalist took her off of her usual “nose drops,” to which she has been addicted for at least 40 years, that I know of. And that has her nearly frantic.
And, today, she’s been showing some intermittent paranoid psychosis. And she still can’t walk or stand up on her own.
The social worker says that a lot of nursing homes won’t consider her, because of her history of getting agitated and hostile with the staff during this hospitalization.
Back at the home front: Tracy, my mother’s un-housebroken wire-hair fox terrier, escaped from my yard today; fortunately, I was at home when it happened, and found him and brought him back. So he and I got in the car and went to Petco and got him a wire cage thing, with a nice bed and water dish. He seems to like it OK, so far. When he goes out in the yard, he now has to be escorted, and taken on a leash through the house, back to his box.
I’m pretty tired this afternoon.
Image via WikipediaWhen your mother isn’t eating (or walking): As “the Daughter,” the first thing you will probably do, is that you will send up alarms, to the doctors and nurses, and try to get the hospital staff to DO SOMETHING. And they will will try to do something. But I have found that they will not usually sit beside your mother at every meal, with a spoon, and try to cajole her into eating an adequate amount of food.
The docs and nurses will also tell you that it is possible to take other measures… chiefly, the infamous feeding tube. What I have learned from my mother’s various doctors is that putting in the feeding tube is not only a really unpleasant thing for the patient, but it’s also a sort of a final thing, or a next-to-final thing. People rarely go back to eating normally after that happens; and, once the feeding tube is in place, then there will eventually be the need to decide when (or whether) to remove the thing.
My mother is not enjoying any small piece of this. She is mostly furiously angry with me, because of some things that are true (I am not going out and buying her “nose drops,” and I keep bringing her the wrong sweaters to wear), and also because of lots of things that are not true (she thinks all kinds of delusional things, lately).
Today my mother’s nurse gently placed some purple bands on my mother’s tiny, bruised wrists. They say: “CHECK CHART.” That’s a sort of an inside language that means that the person who is wearing these bands is a DNR, or (“Do Not Resuscitate“). There is even a little formal ceremony that takes place when a patient goes from “Full Code” status to “DNR” status: two nurses have to be in the room, and they scan the code on the patient’s wristband, and read aloud the number in the chart. I sat beside my mother (she had no idea what they were doing) and held my head in my hands as that small liturgy took place. And I thanked the wonderful nurse who made sure it happened properly. This was the same nurse who fed macaconi and cheese to my mother, tiny spoonfuls at a time, for her dinner tonight, because I asked her to.
|Image by lorenzo cuppini [...still busy...] via FlickrThe unexpected:
This morning when I arrived in her room, my mother asked for a newspaper. And I went and got one, and read some articles out loud to her. We discussed world affairs. She expressed amazement that Barack Obama’s grandmother really loved him, even though he is biracial (“biracial” is not the term she used). When I asked why that would amaze her, she said “Well, her daughter was white, and had a baby by a black man. In the South, we don’t approve of that.” I suggested that perhaps a lot of people in the South no longer have such rigid views about such matters; she replied: “I don’t think so… not unless they have changed in the last 30 minutes.”
In other words: She’s back. She’s back to the same cognitive functioning (and certainly the same personality) that she had just before I hospitalized her. And this caused me to pretty much lose my composure for much of the day, because it means that she might now be considered technically competent to be making decisions for herself about her health care. Which would mean that she will refuse to go to a nursing home, and she will cause endless amounts of havoc during the rest of this hospitalization, and after.
Later this afternoon she had to get some suctioning done of the fluid that stays around her throat, causing the gurgling cough that she is still doing; she has fought that treatment before, but today she called the respiratory therapist a f***ing bitch, and threatened to kill the nurse…She still isn’t really eating. She can sit up by herself, but has to be helped to stand up.Tomorrow I will see if the people from psychiatry will come back in and see what they think about her current competence, and I will ask the social workers to keep trying to find a good nursing home for her, and try to find out how we can get ahold of some funds to pay for this, if it’s going to happen. The one thing I can say with certainty, but great sadness, is that she cannot come stay with me.
|Image via Wikipedia
One battle that has raged throughout my mother’s (now, 10-day long) hospitalization has to do with nasal spray, or what my mother calls “nose drops” (long ago, they actually came in the form of a liquid that you dropped into your nose). Some people use them for years, decades, at a time. On a daily basis, several times an hour, even. This backfires, makes them dependent, or “addicted.” The doctors want people to get off the nose spray and use something else, I think it’s called flonase, that works if you use it twice a day. But when you do that, your nose will be clogged up for a week (until the nasal tissue gets re-adjusted).
So, while I was making decisions for my mother (at the worst of her confusional state), I went along with the doctor who said she should get off the Afrin and just use the flonase. This has not worked well, to say the least. And, now that the psychiatrist (bless her little heart) has opined (based on a 5-minute exam, and on my mother’s expressed willingness to “talk to” the social worker) that my mother is competent to make her own health care decisions, the Afrin will undoubtedly come back into action. And, I say, that’s fine. No point fighting over the (relatively) little stuff (although this nose spray problem, they tell me, can exacerbate her overall breathing and swallowing problems). But big decisions are coming up, like where mother will go when she leaves the hospital. Let’s say she agrees to the skilled nursing facility, short term, for some rehab to get her up and walking again. That would be great, but it will then be quickly followed by her gigantic lack of cooperation, unreasonable demands, and general trouble-making, when she gets to this facility. Already, yesterday, she refused to do physical therapy or occupational therapy, and once again told the therapists to “get the f*ck out of” her room.
And this is what I worry so much about… what happens, when they call me and tell me that they cannot help her any more? It takes, I hear, 3 months to get guardianship accomplished…And let’s say they actually do diagnose dementia, while she is at the nursing home (and I believe she has had a slowly progressing dementia, on top of her personality problems, for years… just now it is becoming disabling). Then there is the problem, again, of how medication is used/abused in nursing homes to subdue difficult patients; click here
for a recent NYT article about that… I’ll just have to take it on a day-by-day, moment-by-moment basis, noticing all the while that these anticipated future disasters keep intruding into my mind.
Image by Getty Images via DaylifeYesterday I met a friend for coffee, and had a session with a counseling intern I am supervising at the KC Free Health Clinic. These were the first two “normal” things I have done since my mother went in the hospital, 11 days ago. This thing has really consumed my life. I have spent most of every day at the hospital; the nurses tell me, “You can leave, you don’t have to stay here.” And I do leave every day to get necessary stuff done, but when I come back I almost always find that something is going wrong, or going undone. For example, my mother is very dehydrated, and getting more so every day. Her doctors are asking the nursing staff to push fluids into her, but they just flat are not doing it. They do stick their head in her door several times every hour, and ask her if she needs anything; and they respond to her call buttons. But she isn’t drinking more than very small sips of liquids, on her own, and nobody is reminding her to do that, except me. They have massive problems getting an IV into her, and don’t want to transport her anywhere with an IV going.
Which brings us to the good news: there’s a really good skilled nursing facility that has agreed to accept her, and she has actually agreed to go there (as of last night, anyhow). The idea is that if she can get some strength back, get some fluids in her, get some physical therapy, then maybe she can go home. I don’t yet want to worry about what that might be like, if she’s back in her own house again, refusing to let anyone come in and help her, or clean (anyone except me, that is), and calling me 10 or 20 times every day, demanding that I “get over here.” Not yet.
Image by Tonyç via Flickr
Yesterday my mother moved from the hospital to a skilled nursing facility, also known as “the nursing home.” The place she’s at is a very good facility, with a great reputation. But, of course, this is what she has always feared, and what I have always dreaded. For someone as independent and stubborn as my mother, it’s like putting a wild animal in a cage. This morning, I learned that during her first night there, she threw a table (and broke it); she threw a water pitcher at an aide; she has been “verbally abusive”; and she is refusing to take her medication.While I was standing at the nursing station hearing about all this, I could see her sitting in a lounge, by herself, still in her pajamas. She was leaning down, with her hands doing something near her feet. I walked over and said “good morning.” She was happy to see me, and said she had had a horrible night. She said that she was afraid that the world had ended… she wanted me to take her out of there, to see her dogs (she only has one dog)… Her leg was bleeding, near her ankle; it looked as if she had run into something… I told her I loved her, and that I’d be back later, and I kissed her, and left. One of the nurses had come over, and was working on cleaning up and bandaging her leg. She told me to go on to work, and to let them take care of her.
Just under two weeks ago, Mother was living in her own house, with her dog. She wasn’t living her life the way I would have wanted her to (she had no friends, was at war with her neighbors, did not really eat properly, and would not let anyone other than me come into her house to help her), but it was her life, and she had always gone her own way, and to hell with what anybody thought about it. I had always hoped that she would one day just have a merciful, and fatal, fast heart attack, so that we would never have to face this whole nursing home question. I am so very sorry it didn’t happen that way.
|Image by Rubira via Flickr
My mother has always believed that people are cheating her and stealing from her. She has created many, many problems over the years by accusing people of stealing or cheating, refusing to pay people for work they have done for her, refusing to let people in her house because they might take her stuff, not letting her dog stay outside in the (fenced) yard for very long, because she thinks someone might steal him (and, as a result, he often urinated in her house).This kind of relating to the world and to other people is called Paranoid Personality Disorder
. It does not respond well to any known form of treatment; that is partly because people with this problem do not think that there is anything wrong with them. Sometimes it is difficult to distinguish Paranoid Personality Disorder from full-blown Delusional Disorder, and sometimes a person can fluctuate, back and forth, from the more severe version to the relatively milder version.
Paranoia overlaps quite a bit with narcissism. It’s a way of thinking that is very self-referential; a person who is paranoid tends to think that everything is about her. She thinks that everyone is talking about her, or plotting against her, or she thinks that everyone wants whatever it is that she has. And it is really impossible to persuade or argue people out of their paranoid ideas; they can always find a way to support their accusations and beliefs. Sometimes they will simply fabricate, or confabulate, supporting evidence; they are not really consciously lying, but rather their minds are trying to create consistency. For example, my mother came to believe that her next door neighbor (who is a very, very nice man, someone who has over the years helped her in many ways) threw a tree branch over the fence into her back yard. In fact, the branch came down from her own huge elm tree during a big storm. She called the police about it. She called the police more than once about it. They sent officers out, and eventually one of them helped her to move the limb from her yard. She now believes not only that her neighbor maliciously threw the limb into her yard, but that the police asked her to call them about the neighbor, and that they told her that the neighbor is “a jerk,” and “a problem.”
Now that my mother is in a skilled nursing facility, she believes that I am the enemy, and that I am stealing her money. Yesterday, she said that she had “heard” that I have been “writing checks” on her. She knows, or knew at one time, that I have been paying her bills and taking care of her house and her dog. But now she seems to think that I am writing checks for my own benefit. It seems likely that I will have to petition the court to be appointed her guardian, because she just does not seem capable of understanding her medical condition(s) or complying with treatment. When and if I do have to pursue guardianship, that will make me “the enemy,” in her eyes, forever. This is so, so very painful.
Image by Getty Images via DaylifeYesterday I went to the nursing home twice to visit my mother. The first time, in the morning, I found her lying in bed, under the soft wool blanket I had brought to her from her house. She said she was cold, so I found her a sweatshirt to put on. When she sat up to put it on, I was shocked to see that she wasn’t wearing a shirt. When I asked her why, she laughed, and said “It’s hard to explain.” We talked some more about why she was at the nursing home, and what she needed to do in order to be able to go home (physical therapy, mostly). But she won’t, or can’t, understand any of this.
Later, I went back and took her dog with me, hoping that a visit from him might help her get oriented and motivated. But it wasn’t helpful, at all. She was still in bed. Tracy ran around her room, looking at everything except for her. He did not appear to recognize her, and would not come to her when she called. She said that I had “thoroughly alienated” him. She talked in a very confused way about the terrible “plans” I have for her, and about how she has been “traded,” and “bought.” When I ask her what she means, she says she can’t explain, and will tell me later. And she says, in no uncertain terms, that she is absolutely not going to talk to her doctor, or do any kind of physical therapy.
Mother is back to the confused state of delirium that she was in when I first took her to the hospital, 2 weeks ago. I asked the nursing staff to get some blood drawn to check her electrolyte levels. And then I went home.
And I am watching my mind as all kinds of regrets present themselves, the endless self-questioning and self-recrimination and self-justification… (noticing that the word “self” is heavily involved in what this mind is doing… )
It goes like this: What should I be doing differently? Should I go over there and spend all day with her? Should I put her in a different facility? Hire a private-duty caregiver to give her extra attention? And what should I have done differently before events turned in this direction? Could I have spent more time with her, despite her paranoia and bitterness? Would that have helped?
And of course all these thoughts are about control. The story my mind is selling to me is that I can and should control things, including my mother and her illness. And I recognize that this is not unlike my mother’s own life-long efforts to control everything and everybody.
But this is not stuff to be controlled. This is just grief, just dying, just illness, just a part of this human life, and there are many, many people who are going through what my mother is going through, with daughters (and sons) who are going through what I am going through.
It’s difficult, but essential, to do the work of acceptance, the giving up of the mental battle that we wage against the things that do not lend themselves to control, or manipulation, or demands that things be different.
And right now there is nothing really to be done except to keep noticing all these thoughts, knowing that they are just thoughts, noticing the feelings of grief and fear and frustration, paying attention to physical sensations, and bringing my attention to sights, and sounds, and to work that needs to get done.
One of the nurses called me about my mother. She is still refusing to take her medication. She’s also not eating enough, and not drinking enough fluids. Now, they are talking about sending her to a psychiatric hospital. Having spent a lot of time working in psychiatric hospitals, and knowing my mother, I find it very difficult to believe that there is anything good that might come of such a plan; but, I can’t really know. I simply cannot know what a good plan might actually be, or if there could be any plan that might be called “good,” in this situation. I have a terrible urge to just bring her home to my house, and I do know that that would be disastrous. Helplessness, sorrow.Here’s a picture of my mother, probably taken in the 1940’s. Her name is Dorothy.
Image via WikipediaYesterday, after talking on the phone to the nurses about their proposed plan to send my mother to a psychiatric hospital, I talked all this over with a good friend, someone who has cared for an aging mother. This really helped me to put things in perspective. I went back over to the nursing home, and spent about an hour with Mother, and found that she was actually doing better. Not perfectly rational, but better. While I was there, she took some of her meds, responded pleasantly to an aide, discussed which clothes she wanted me to buy for her and bring to her, and put on some makeup. Very good signs. I told the nursing staff that I thought that sending her to a psych hospital might actually turn out to be a setback for her, in part because she gets really disoriented when she is moved to a new place. And I am afraid that they would put her in restraints, if she became agitated again.
Today I’ll go over there and take a picnic lunch to Mother. I hope that pretty soon she will start eating in the dining room with everybody else, instead of getting trays in her room. I also arranged for her to get her hair done, on Monday. That should help her begin to feel more normal…
Took lunch to Mother today, and she was doing what I call pretty good. Maybe even a little better than yesterday. I helped her get dressed in some new blue jeans, and then we had some tuna salad, and deviled eggs, and potato chips together. After lunch, I wheeled her outside and we sat in the sun. While we did that, she gave a detailed recounting of the night, 12 years ago, when my father killed himself (with all of her disdain and fury fully expressed).
She refers to her next-door-neighbor as “that goon” (the poor old woman does a lot of moaning).
Image via Wikipedia
Can’t Stand Fences: This is Day Seven for Mother at the nursing home. Yesterday was the first day she started asking when she would be getting out of there, and she wanted me to hire a lawyer for her. Today was much worse. She desperately wanted her purse, and her identification card (“I have no identity, nobody knows who I am… “), and some cash. “At least $500, I can’t even buy dinner.” Of course I tried and tried (and tried) to explain everything, I promised I would bring her purse tomorrow, or later today, and said I was sorry, and said I had to leave to go to a meeting, and then (I knew this would be coming, soon) she begged me to take her with me. She held onto my arm and would not let go. I walked slowly out of her room, down the hall, with her hanging on to me, while staff members tried to distract her and pry her away from me… she cursed them and tried to hit them… Finally she let go, and one of the aides said to me “Go!” and I did. I went to my meeting, did the work I needed to do, and I cannot really imagine how I did it. Probably, not very well. This is absolutely harrowing.
Having Three Dogs: A lot of elderly people have pets, and that’s both a good thing and (potentially) a not-so-good thing. Having a pet can greatly reduce the loneliness that often comes with aging. A dog (or other pet) provides something (someone) to care for and about, automatically creates activities and tasks that must get done, and adds a whole lot of depth and meaning to life. And, of course, problems arise when the elderly pet owner dies, or no longer can care for her pet. One of the cats in my household arrived here because her owner went into a nursing home, leaving 4 or 5 cats homeless. I found Jezebel at a pet store, at one of those displays of pets needing adoption. Here she is:
I hope her mother and siblings found great homes, too. Jezebel is pretty happy here.
Now that my mother is (at least, for now) in a nursing home, we had to deal with the fact that she lived at her house with her dog. My first thought, when she went into the hospital, was to put him in a boarding kennel. For one thing, I was overwhelmingly busy with my mother and other stuff. For another, this dog had a habit of urinating in my mother’s house, and I was sure he would do the same at my house. My mother had never really done any training with him, and she had not neutered him, either… So it seemed likely that he would come into my house and run all over the place, marking his territory and attacking the cats.
But, instead of taking him to a kennel, I brought him home, and kept him penned up where I could keep an eye on him. Bought him a crate, kept him on a leash beside me when he wasn’t in the crate, made him go outside frequently with the other dogs. Pretty much like raising a puppy, except this one is 8 years old. And, miracle of miracles: he has not once urinated in my house. On one single occasion I saw him start to lift his leg, and I yelled NO!! and he put his foot back down. That was it. And, equally important (and most peculiar, for a Wire-Hair Fox Terrier), he seems to actually like the cats.
So now this household includes two cats and three dogs… Perhaps this new fellow has some surgical alteration in his future, perhaps not. He has already been bathed and groomed a couple of times, and he has new outfits (collars, leashes, tags, etc.), and a small swimming pool beside the back deck, which he loves. He lies on his side in the pool, immersing his whole body, including his face, and spins around in the water. A lot of fun for him, and a lot of fun to watch. (The other dogs ignore the pool, and this whole swimming thing he does.)
Meantime, my mother has now decided that she never really liked him, and that he never really liked her. Maybe so. She is saying she wants to “give” him to me… We’ll see. So far, he’s loving it here. Here’s how he looks, these days (not a show dog, for sure, but a good dog):
The “original” dogs (also known as the “big dogs,” Ruby and Scarlet) are not thrilled, but they are getting used to him. They are doing their best to remind him that being the only male dog does NOT necessarily mean anything, in terms of his place in the canine hierarchy. So far, he is most definitely the lowest in rank.
The Cadillac of Walkers: My mother has had severe arthritis in one knee, for years. Walking is very painful for her. She should have had a knee replacement, long ago; now, her impaired lung functioning (and overall condition) won’t permit it. Once, after she finally agreed to try using a cane, I bought her one. In a fury, she threw it out onto her back deck, where it remains to this day. She didn’t remember saying she wanted to try one, and she hated the one I bought her. Later, noticing how well she walked in the grocery store, pushing a cart, I bought her one of those really sporty walkers, the one with the hand brakes, and a built-in seat, for when you want to take a break and sit down. I took it over to her house, where it sat, ignored, for several days. Finally, she said, “Get that thing the hell out of here.” So, for the last year or so, it has sat in my basement. Waiting, I guess.
A couple of days ago I went over to the nursing home and was surprised to see a walker in her room. I asked her where it came from, and she smiled proudly and said: “I stole it!” Sure enough, the staff told me that she had gone into her suite-mate’s room and stolen the walker. Fortunately, it was not much of an issue, because the other old woman is now totally incapable of using it. But I figured this might be the time to haul out the walker that had languished in the basement. I took it over there today, and (amazing!) she was thrilled. I told her that it was the “Cadillac of walkers,” which pleased her tremendously. Certainly, it’s nicer than the one that she stole. We walked outside together, with the walker, and sat in the sun for a while. She patted its handle and announced that she was naming it “Barney” (that was the name of one of the horses she had when she was a kid).And then she looked worried, and asked where she was going to have dinner, that night.Today was not so bad, as these days go, with my mother. Pretty good, actually. I have spent a good bit of time lately, talking with friends, fellow baby-boomers, who have gone through similar journeys with one or more parents. Sometimes they have siblings, and that helps; sometimes, they have siblings, and that doesn’t help, at all.
“TWO weeks ago, he was in the parking lot of the assisted living community where my mother lives. Last week, in the lobby. Next in the elevator.”He is a forlorn man, in his late 50’s I’d guess, and he seems to carry the weight of the world on his shoulders. His mother, past 90, moved in recently. She is miserable, he confides, always cranky, berating him for not visiting more often…
“We are our own society, the middle-aged children of parents who are older and more dependent than they ever intended to be, and we sniff one another out. Sometimes I’ll reschedule an interview, explaining that I am taking my mother to the doctor, and the person on the other end of the phone, a total stranger, will start talking as if a dam had broken.
“In one such conversation, a publicist described searching for someone who would go weekly to her mother’s room in a nursing home and do her nails. The staff there was lovely, she told me. But it was an institution, after all. Nobody quite understood why a fresh manicure could mean so much to an old woman. She said she and her mother had never been close. It amazed her that she cared so much now, had spent hours searching for a manicurist when she ought to be working. Every day brought a similar surprise, she said, a muddle of love, fear and fury.”
Yes. “A muddle of love, fear and fury.” But being with my mother today was pretty good, as these things go.
July 7, 2008. Nursing Home Culture: When your elderly parent goes into a nursing home, you begin to receive an orientation to a whole new world. There are rules that are not written down anywhere; there are ways that things are done, there are hierarchies among staff members, there is a whole new culture to navigate.
A few days ago, as I walked into the nursing home on my way to my mother’s room, I noticed that there was one old woman sitting by the aviary who looked a lot more alert than the others. Most of the residents I have seen in that place appear to be well and truly out of it, incapable of coherent communication. But this one woman was sitting up straight, actually watching the birds. And when I walked past, we made eye contact. I said “hello,” and she said “hello,” right back.
My mother has been spending most of her time in her room, by herself. She nearly always refuses to go to the dining room for meals because, she says, “Those people are horrible. They are all crazy.” I have taken a look into the dining room during a meal, and I have to agree that I wouldn’t much want to eat dinner with that crowd. But I can also see that not all the residents are totally out of it. So, when I ran across the nursing home’s social worker on Saturday, I asked her if she would make an effort to see if there were residents that my mother could talk to. She responded with a strange smile (the smile seems pasted on her face at all times, actually), saying “What sort of people would you like for her to talk to?” And I replied, perhaps a bit impatiently: “People who are capable of carrying on a conversation!” She appeared to ponder the idea, and suggested that maybe the aides, or maybe the “activities people” could help me with that. Clearly, this kind of work is not part of her job.
Yesterday afternoon, when I went for a visit, I encountered a strong odor of feces near my mother’s room. And Mother was in her pajamas, in bed. I was not pleased with either of these situations. I went to the nursing station, where there were 4 staff people sitting around, chatting. Odor of feces? They assured me it was not coming from my mother’s room, but from her suite-mate’s room. Mother not up and dressed? That was because she would not let anyone help her get dressed (Mother’s version, of course, is that nobody would help her). My dilemma? Do I inquire as to when or if someone is going to go into Suite-mate’s room and deal with the shit (literally)? Do I pursue further the matter of my mother lying in bed in her pajamas in the middle of the afternoon? Up till now I have been very nice, very chatty and jovial with the nursing staff, with the idea that if I am nice to them, they will be more inclined to be nice to my (very difficult) mother. But how far must I go with this? How insistent (how obnoxious, from their perspective) can I be, without running the risk that someone will take it out on Mother? I have no idea.
The picture above is my parents (with Rip) in the early 1950’s. One of the very few pictures I have ever seen of the two of them, together. My father was an Air Force bomber pilot, veteran of WWII; my mother was an Officer’s Wife, much the same way that Jessica Lange was an officer’s wife in the film called Blue Sky…
Breaking Out? Yesterday I went to see my mother at the nursing home. She was sitting out by the aviary, and when she saw me she glanced over, gave me her worst gaze of contemptuous fury, and said, grimly, “This will cost you… this will cost you more than you know… ” She has no memory of having agreed to go into the nursing home, when she left the hospital.
She was all up and dressed, and looked better than she has looked, before. I told her that it was probably time to consider where she should go next… how about an apartment (assisted living) there at the elder-care facility? “NO,” she said. “I have my own house.” I asked her what about some help around the house [something she definitely needs, but has never before permitted]? She said, “I’ll get a nig.” (This was while she was no more than 2 feet away from two aides, both of them black women, who were working on the med carts… They did not display any response to this, and I admire them, cannot imagine all that they must put up with.)
So, I left, and thought about it… She is walking, she is swallowing OK, she is getting up and getting dressed on her own now. She is pretty much where she was just before she went into the hospital… and I am not her guardian. Nobody has actually said she is not competent to make her own decisions. So I called the Director of Nursing and said, “Let’s let her go home.” I said that I really don’t think we can keep her in the nursing home any longer, against her will, now that she has done everything anyone asked her to…
I spent the rest of the afternoon working on all that, working with the staff to get the discharge planning done, getting home health care lined up, etc. Then, when I went back to her room with the person from the home health care agency, I found Mother in bed, in her pajamas. She said: “Oh, I can’t possibly go home tomorrow. I don’t have any groceries in the house, and I have a sore throat.” And, for good measure, she accused me once again of stealing her money.
I feel as if I am held hostage to insanity. It’s one of those situations in which there is no clear and correct path; there is only an ever-shifting array of bad choices, and the task is to try to keep choosing the least-bad choice, at every turn of the road. A few days ago, Jane Gross wrote a piece in the NYT Wellness blog called “What I Wish I’d Done Differently.” She describes several of the decisions that she made while her mother was becoming increasingly sick and disabled, and then points out:
“All of these mistakes would have mattered less if the trajectory of my mother’s decline had been different. But that trajectory, alas, is unknown and unknowable but for its certain ending. So every decision we made — residential, medical, financial — was a crapshoot that changed the landscape for the next decision, usually by limiting options I didn’t even realize we had. There’s no way around this uncertainty, no way of knowing what’s going to happen next so you can plan accordingly… ” [emphasis added]
Gross suggests consulting or retaining geriatric specialists, social workers, lawyers, financial planners… And that is a good suggestion, in theory, for those who have the time and the means to do all that. I have been scrambling around for weeks now, looking for and talking with various of these people, and (as of yet) I have very little to show for it.
Image via WikipediaLosing Hope: The elder care facility where my mother has been for the last couple of weeks or so has three levels. One is basically a “nursing home.” That’s where my mother has been, since she left the hospital. Next up the hierarchy is “independent living,” in the apartments. You can make them into “assisted living” by hiring people to come in to help out. Next up from that are the villas, actual houses, with yards and stuff. In the “independent living” apartments, the old person gets a really nice apartment, and two meals a day, plus some cleaning and checking-on by staff. If the old person needs more, she pays for it. There are all kinds of activities scheduled, all day long, and a pool and a gym, and a bank and a library, and people playing bridge. All of that; very nice.
The old folks (almost all women, of course) in the apartments are (from what I have seen) quiet, gentle souls. They glide around with their walkers, talking quietly to each other, or to the staff people. It’s a Methodist outfit. Really upscale Methodist.
My mother has never been a quiet, gentle soul. At home, she tends to get into arguments with people: with neighbors, shopkeepers, dentists, the bank… basically, with everyone. And in the nursing home, she has sometimes been verbally abusive to staff people, and very demanding. Yesterday, she pinched an aide. She is paranoid, sometimes to the point of outright delusions. She often refuses to take her medications. She believes that I am stealing from her.
And I found out yesterday that this nice facility does not want my mother in their apartments.
If a nice facility does not want to take in your difficult old mother, what they say is that they “cannot meet her needs.” They say that their apartments would not provide “the best option for her.” And, if I am being objective, I can totally understand their position. I know exactly what she is like, and I know that I could never live under the same roof with her. And all of this leaves me (and my mother) in a terribly difficult predicament. I know that if she goes back to her house, she will not permit caregivers to come in and help her (I have hired people, before, and she runs them off). She will want me to do everything for her. And if I were to try to do that, I would be unable to work, and I would lose my mind.
And if I let my mother just live there, in her house, without any help, I will be legally and morally guilty of neglect.
I am all the family that she has. She has no friends.
Today I will begin the search for other “assisted living” facilities. They will want to review her chart, and talk with her. I’m losing hope.
Some Hope (?)
: When I posted the entry just preceding this one (“Losing Hope
“), I also tacked on a couple of relevant articles at the bottom, via the Zemanta machine. And then I actually read one of the articles
, the one about the apparently dreadful Atria people, who run a bunch of rip-off facilities for the elderly. The article is pretty scary. But then, I got down to the comments, and found this, from “DottiAgingSafely”:
“I am an RN that does Long Term Care Placement… What was said in this blog is entirely true [about] large assisted living facilities. It is the marketing folks who are in charge, not the medical… folks can pay these facilities hundreds of thousands of dollars over the years, and if they run out of money they are booted out. We see catastrophic failure after failure because patients are accepted who have no business being in one of these facilities. Dementia clients live behind closed doors by themselves, and their families wonder why they are declining so rapidly… I would encourage a family looking to place their loved one should consult with a… placement professional who knows the Adult Family Home World. I believe it is the cutting edge of long term care as it should be.”
So, I thought: a professional placement person?? What is that?? Nobody at my mother’s current nursing home has offered me (despite my questions) a shred of advice about where my mother might get the best care, nor have they referred me to someone who could help with that. They just know that they don’t want her in their apartments. Their on-site social worker just gives me shrugs, and odd smiles. In my emotionally exhausted state, that took me, yesterday, just nearly to some kind of despair. But after reading that comment, I got back onto the internet, and found the an outfit called ElderCareLink. Here’s what they say about themselves:
“ElderCarelink is an internet-based referral service-free to consumers-that specializes in eldercare case matching for elders and their families. ElderCarelink assists families in finding a multitude of services, including assisted living, nursing homes, adult day care, private duty nursing, care management and homecare. With participating providers in all 50 states, ElderCarelink identifies qualified eldercare service providers and product suppliers who meet the specific needs for each family’s individual situation.”
Within a few minutes of filling out their online form, I was talking on the phone with a person in my own city who asked me some more questions, listened to my tale of woe, and gave me all kinds of contact info about a few facilities that might be just what my mother needs. By early this afternoon, I had already toured one facility, and they had sent a nurse out to the nursing home to meet and assess my mother. I was amazed, and hopeful… this was free.
p.s. (two days later, I say): CAUTION! as to the people I just wrote about, above. See my subsequent posts, below (or here).
What To Do About Mother? This business of trying to figure out what to do with, or about, or for my mother seems to have a never-ending series of twists and turns. First (just a month ago), she was in her own home, living with her dog. She totally refused any in-home care. Her house was quite dirty, and she was not eating well. Losing weight. Angry all the time. Next, she developed a very bad cough, and confusion. In the hospital for 12 days, got weaker, unable to walk. Cough improved. Confusion mostly (but not entirely) cleared up. Moved to “skilled nursing facility.” She hates it. I would hate it, too; nearly all the other residents are totally incapable of coherent conversation. Most of them bellow or moan, or are totally silent. But now she is up and walking, with a walker. She wants to go home, but it’s obvious that she still won’t accept in-home care. And, she’s delusional.
Now: I am trying to get her moved into an appropriate facility. The facility she is now at has “assisted living” apartments, but they have decided that my mother is too much trouble (she is very demanding, sometimes paranoid, and argues with people a lot), and they will not offer her a place. They have no advice whatsoever to offer me as to where I might turn. I have never once spoken to her “physician,” who (according to the nursing staff) “zips in and out” of the nursing home. Everyone else just shrugs their shoulders. I have asked for a neuropsych evaluation, but my mother refused to talk with the psychologist who was asked to come in.
I was initially relieved to find an internet-based referral service that offered to direct me to facilities that might be appropriate for my mother. But, as it turns out, the places they referred me to are all extremely expensive, profit-driven corporate entities. And they operate in the nearly unregulated area of “assisted living.” I went to visit one of them yesterday. It was stunningly beautiful, staggeringly expensive, and (when you research the corporation, online) it is also a major target for complaints by consumers, and its own employees. I looked at another (much smaller) facility, also. It is nearly brand-new, no time yet to have developed any kind of reputation or track record. Also, incredibly expensive (these places generally cost upwards from around $6,000 a month). At the smaller place, my mother would be locked into a very nice house (she could go out into the fenced back yard) with 4 or 5 other old people, and 2 or 3 staff people (including one RN) most of the day, and a CNA at night.
And then I talked on the phone with a nurse in another state (long story) who said that I really must get a 6-8 hour independent assessment of my mother, by a nurse. But where would I find such a nurse?
I ended the day yesterday more confused than ever, not knowing where to turn, once again feeling pretty hopeless… and then, I did EVEN MORE searching around online (this has practically consumed my whole life, for the last month), and found the National Assoc. of Professional Geriatric Care Managers (click here), which says this about itself:
“Professional Geriatric Care Managers (PGCMs) are health and human services specialists who help families care for older relatives, while encouraging as much independence as possible. The PGCM may be trained in any of a number of fields related to long-term care, including, but not limited to, nursing, gerontology, social work, or psychology, with a specialized focus on issues related to aging and elder care. The PGCM acts as a guide and advocate — identifying problems and offering solutions.”
I went to the directory on the NAPGCM website, and found that there are 6 or 8 of its members near me, several of them affiliated with a Catholic hospital that also has long-term care facilities. I am working on getting into contact with these folks, right now.
So, forget what I said in an earlier post about the online facility referral place. It isn’t necessarily such a good thing.
Above, there’s a fairly recent picture of my mother. It was probably taken 4 years ago, when she was 84 years old: she doesn’t look all that different, today, just past 88 years old. Yesterday I spent most of the day working on this project of trying to find a way to safely get her out of the nursing home and into a good facility… and I did her laundry, and then went and picked up dinner for both of us, and took it to the nursing home. We sat outside on the patio and ate (really good barbecue sandwiches). She absolutely hated her dinner, and was bitterly angry with me because I had not brought her a steak (cooked rare), and because she thinks I am stealing her money. I feel like telling her that I don’t have time to be stealing her money…
Perceiving Dementia: I am a psychologist, and one of my specialty areas is the assessment and diagnosis of mental disorders. In fact, I have taught this stuff to graduate students. And so I am humbled (but not surprised) to find that I have had such tremendous difficulty in accurately perceiving my own mother’s mental problems. I find that it is strangely hard for me to accept that she truly does have some sort of dementia. Partly it is because my mother has been unreasonable (and suspicious) all her life, and so I have a high tolerance for this kind of thing, in her. But, when a person moves all the way into delusional thinking, it has gotten serious. And this is very common in the progression of dementia. Today I found a web resource, an excerpt from a book (by William Grote) about helping elderly parents, that seemed to eerily echo my experience with my own mother. Here are some bits taken from that online excerpt:
“Dealing with dementia symptoms in your own parent can stretch the limits of your sanity. Sometimes you may not even notice the first symptoms of dementia — the slow decline of your aging parent’s memory. The symptoms of dementia may continue until your aging parent starts exhibiting signs of other mental disorders, such as paranoia or delusions, which frequently piggyback on the effects of senile dementia. These symptoms may keep reappearing, until you can’t ignore them and you’re forced to take action…
My own mom… was highly organized and extremely independent… But [her] new VCR [and microwave] were never turned on unless I happened to visit… It never dawned on me at the time that my mom had stopped wanting to learn new things…
Soon Mom became suspicious and paranoid about her neighbors. She thought they could see into her windows, so she would keep the shades drawn tight with safety pins. She talked me into erecting a large barrier to block the neighbor’s view. I did as she asked, even though I thought it was strange to be building a barrier. Mom had always been a little paranoid anyway. I figured it was her scar from having survived the Great Depression. I rationalized that if building a barrier helped her sleep better, and she could open the shades in those darkened rooms, it was worth the effort. I didn’t realize the obvious – that her dementia and her paranoia was growing…
The amazing part of all this is that my sister and I continued right on with our lives, denying Mom’s odd behavior – while helping her change bank accounts and get new locks for her apartment. We just figured it was normal for our aging parent to become strange when she turned 80 years old. We never suspected dementia was taking her away from us.
Symptoms of dementia are insidious, because they start so slowly. Often they are mixed with periods of what appears to be normal behavior. So just when we thought she was showing symtoms of dementia, she’d return with what appeared to be complete clarity… Looking back, I can clearly see the progression of the disorder. But at the time, senile dementia sneaked in and stole Mom from us without a clue. Because of our busy schedules, hectic lives, and maybe a little denial, we didn’t see it until it was too late…
So we took Mom to doctor after doctor trying to find a cure for her symptoms. Was it low iron, low zinc, or low potassium? They drew countless pints of blood trying to rule out what could be causing her behavior. But eventually, most of the doctors proved worthless in offering real help. Not one seemed to be able to tell us what was wrong. None of her five doctors could give us any advice that would help her. They all seemed to deny there was any problem. Fortunately, we met a geriatric counselor who advised us to take her to a local hospital for a geriatric evaluation. I wish we had done this evaluation five years earlier…
If your parent’s doctors won’t get involved, it may be up to you to notice that your parent is exhibiting symptoms of dementia and up to you to initiate action to treat their dementia… check the health page on this Web site for news on the latest scientific tests and studies relating to dementia and how to prevent it. Also there’s an excellent Website that may help: http://www.dementia.com “
I think that the most amazing, and discouraging, aspect of William’s story, and mine, is that the physicians who were involved were unwilling or unable to offer useful assistance (and apparently, this is not at all unusual). The physician who is “treating” my mother in the nursing home is a board certified specialist in geriatrics and internal medicine… yet this doctor has shown zero interest in working with me to develop a plan to assess and care for my mother’s obvious cognitive deficits. How many children of aging parents have the wherewithal, the time and resources, etc. to go beyond the doctor’s shrugged shoulders?
The Mini-Mental Status Examination
: While going through my elderly mother’s recent hospitalization, her stay in a nursing home, and my efforts to get her properly evaluated and treated, I have become utterly appalled at the overall poverty of understanding of dementia among physicians. This includes psychiatrists, neurologists, and all kinds of geriatric specialists. What I have found, over and over again, is that they use what is called the Mini-Mental Status Examination (MMSE
) when they are examining an elderly patient who is confused. And they seem to think that they are conducting an adequate examination of the patient’s cognitive status.This is simply unacceptable. The MMSE is a very brief (usually it takes no more than 5 minutes to administer) screening tool
used by psychiatrists and psychologists who are in a hurry, and have no time (for whatever reason, legitimate or not) to do a thorough evaluation. It is very easy to learn how to do; I have told people that I could teach a 5th grader to do it. It is called the “Mini” mental status
exam for a good reason: it is in fact a very quick and superficial procedure. It is to be contrasted with a full
mental status exam, which takes a significant amount of time (and, to do properly, requires a lot of training). More importantly, it is NOT designed (or validly used) for the assessment or diagnosis of dementia
; it neither confirms nor rules out the presence of dementia (or any other psychiatric disorder, for that matter). Many people who have dementia (especially those whose dementia is significantly but not totally
disabling) will “pass” the MMSE, and many patients who do not have dementia will “fail” the MMSE. The rate of “false negatives” (people who “pass” the test even though they have dementia) is extremely high
.The psychiatrist who examined my mother in the hospital, having been asked to give an opinion as to whether she was capable of making her own health care decisions, spent 5 minutes with her, and offered the opinion that she was, indeed, capable of doing so. When I asked her how she could possibly have arrived at such an opinion, after examining a woman who had been refusing her medication, pulling out her IV, and telling physical therapists to “get the fuck out of [her] room,” the psychiatrist replied that she had used the MMSE.When I admitted my mother to the nursing home, after her discharge from the hospital, I asked the in-house physician whether they did a full evaluation of cognitive functioning on each patient, upon admission. He said they did not… but that, “sometimes,” they used the MMSE.
After my mother was admitted to the nursing home, I insisted that the physician order a consult for an evaluation of her cognitive status by a neuropsychologist. He called in a psychologist who is NOT a trained neuropsychologist; this psychologist made one attempt to talk to my mother, but she refused to talk with him. He immediately gave up any attempt to assess her, but suggested that her physician prescribe an antidepressant medication.
Yesterday, when I spoke on the phone with a nurse who offers her services as an independent consultant for geriatric patients, I told her I needed a full evaluation of my mother’s cognitive status. She asked me: “Has your mother ever had the MMSE?” I did not retain her to do the consultation.
The good news: I did finally find a nurse (Gini Toyne, RN, MBA, of Creative Care Consultants) who does consultations in geriatric cases. It turns out that she genuinely understands dementia, and has contacts with an excellent neuropsychologist AND a neurologist who specializes in dementia. She will work with my mother and me, to get my mother properly evaluated and placed in an appropriate facility.
The message to all of you who might be dealing with a parent who has memory problems or other cognitive/behavioral changes that are troubling: Do not rely on any medical professional who tells you that s/he uses the MMSE to evaluate your parent’s cognitive status. That is a huge red flag; it tells you that the person who is telling you this is inadequately trained in the evaluation of dementia. The professionals who are best trained to evaluate patients for dementia are neuropsychologists. This is a highly specialized field, and most psychologists and physicians (including most psychiatrists, and most neurologists) are NOT competent to do this kind of evaluation.
Here are the APA Guidelines for the evaluation of dementia.
The NYT “New Old Age” Blog
: This blog
is a real find. I have been watching it since it started up, a little over a week ago. As it happens, its beginning coincided with my own 88-year-old mother’s hospitalization, nursing home stay, and uncertain future. I have been pretty much consumed by my mother’s situation–it’s hard to imagine how difficult all this is, until you are actually engaged in it–and part of the work I have been doing includes all kinds of online searching and researching into options for difficult, somewhat demented, elderly and fragile parents. One of the things I found is this wonderful blog. The columns have been great, and the comments from readers have been just as helpful, because they have given me a much-needed awareness of how common (the word “normal” doesn’t seem to fit) my situation (my mother’s situation) is. How very large is the number of people, mostly baby-boom aged people, who are struggling with the necessary tasks involved in making sure that their parents are as safe, healthy, and happy as possible. I already knew this, of course–so many of my friends, those who are close to my age, are engaged in this work, or soon will be, or did so, for years, until their parents died. But the comments from all over the country somehow make the reality and enormity of the situation even more real.
The column that struck closest to home, for me, came out on July 14 (click here
). It vividly makes the point that, in caring for elderly parents, “even experts struggle.” It features the story of a geriatrician
and internal medicine specialist, a man who once ran a care facility for the elderly (Dr. Jerald Winakur), and his journey (with his father and the rest of his family) through this awful wilderness. He, right along with the rest of us, has been baffled and frustrated and confused by all the array of poor choices that are available within our current “health care” systems (nothing like a system at all, really, about any of it). He wrote two papers about his experience, both of them available online: “What Are We Going to Do With Dad?
” and “Dad’s Legacy
.” I highly recommend both papers.
As I have recounted, in this blog, the stories about the twists and turns of my mother’s illness, I have sometimes been critical of various of her physicians. And my criticism has, I believe, been justified. Perhaps most important among my criticisms is my observation that the doctors involved in care for the elderly typically do a very poor job of communicating (with each other, with their patients, and with their patients’ families). And, really of equal importance, there is the fact that they sometimes exhibit shocking deficits in medical knowledge about extremely significant issues in geriatric care (two examples: the assessment of dementia, and an understanding of which medications absolutely should not be used for people over 80 [NO ATIVAN!]). But one area in which I have faulted them is, perhaps, not entirely their own fault. And that is their apparent unwillingness/inability to provide answers to the basic question that all of us are desperately asking: “What on earth should I do for my mother?” After reading the essays that Dr. Winakur wrote, I understand that, just like me, they have no idea.
The “difficult” elderly parent
: Here is a basic fact-to-be-faced in caring for elderly parents. An elderly parent who has a decent capacity for positive relationships with others (including her/his own children) is most likely to be cared for in the home of one of his/her children, if that ever becomes necessary; and, at the same time, an elderly person such as this would also have the best chance of faring well in assisted-living facilities. But, of course, the reverse is also true: if your elderly parent is (and probably always has been) what we euphemistically call “difficult,” then you most likely do not want to let this person destroy your life, under your own roof; and the assisted-living people (and the nursing home people, and the home-care people) don’t want to deal with her/him, either.I saw a review
, in the NYT, of a TV documentary, “Caring for Your Parents.” One physician, John Murphy, was quoted as saying that “the single most important variable to never spending time in a nursing home is having a daughter.” And of course that tore at my heart… I am a daughter! Why can’t (or won’t) I just take care of my own mother, in my own home, like I ought to? Certainly, that is what my mother expects of me, and has always expected of me. She has always demanded that I be at her beck and call, at the drop of a hat. She has been perfectly capable of hiring caregivers, drivers, housekeepers, but unwilling to do so (perhaps knowing that they would not put up with the abuse she routinely dishes out)… But the review also notes some unpleasant facts that are often disregarded in these chirpy, upbeat TV shows:
“Caring for Your Parents” examines a handful of families… who have turned their lives over to the physical and emotional needs of elderly parents. The sense of devotion that [these caregivers display] display, the idea that whatever compromises they are making are intrinsically worth it, permeates the film and hampers it, creating a world in which all men and women behave honorably and admirably.In each case study the camera lingers on the images of the elderly when they were young and happy, the presumption being that all the parents we’re seeing gave their children lives rich and full. No one resembles the ornery and selfish patriarch of “The Savages,” the recent fictional film that regarded the same subject with more complexity and skepticism, examining how grown children respond when they are obliged to care for parents who failed (spectacularly) to care for them. “Caring For Your Parents” leaves the impression that we all love our mothers and fathers without ambivalence or reservation… “
It turns out that in this TV documentary, Dr. Murphy (who made the comment about daughters) “is in the employ of an affluent 65-year-old woman… who cares for her 91-year-old mother… with a staff of seven rotating aides at a cost of $250,000 annually. Dr. Murphy oversees [the mother's] medical care and meets regularly with the aides as if he were a corporate leader running a project… “
In the NYT “New Old Age” blog, I found this heart-rending comment from “Eliza”:
“My aunt is belligerent, loud, uncooperative, demanding, and mean in her dementia. When she was in the hospital for a broken hip, the nurses continually called my uncle, very frail himself, in to control her so often that he nearly died from exhaustion. They didn’t hesitate for a minute to demand that he come in 24/7, even though he was visibly weak from cancer treatment.Nursing homes reject her because they can’t handle her.
Now what? Rejected by the experts, this difficult, dangerous woman is supposed to be successfully cared for at home?
Our medical community is geared to take care of the frail and cooperative dementia patient. The families who really need the help are being rejected.”
My mother has been rejected by two assisted-living facilities, so far. In the nursing home that she’s now in (hating every minute of it), she has been “difficult.” She has used foul language, she regularly refuses her meds, she won’t eat dinner in the dining room, and she has hauled off and hit some of the staff members. When I go to visit her, the “visit” usually consists entirely of her demands that I take her home, and her bitter accusations against me and the nursing home staff (and I am convinced that they are very good with her). And the history section in her chart reveals (to anyone who is making decisions about her) that she has a long history of firing her doctors, and getting into arguments with her neighbors. All of this is quite heartbreaking, and also totally beyond my influence or control. She has always been “difficult,” but now she is demented and difficult.
So here is another thing I have recently learned about this whole business of taking care of the elderly parent: getting them placed into a good facility is sort of like selling a house. You really have to clean them up nicely and market them effectively. But, in the case of elderly people, the “sale” is never final; if a care facility takes in an old person, but then finds that s/he is too much trouble (they will say: “we cannot meet her needs”), then they will either call you and tell you to come and get her, or they will over-medicate and neglect her. I found that I was not able to do this “marketing” of my mother effectively, by myself. So, I have retained a professional care management person, and I have temporarily taken my mother “off the market.” The care manager person I found is a nurse, and she is very experienced in this field. She knows which doctors are best at which areas of elder care; and she knows the directors of all the elder care facilities. She has gotten my mother an appointment, next week, with a neurologist who specializes in dementia and other disorders of old people. She hopes that she will be able to get an accurate picture of what is really going on with my mother, and (we hope) some changes in her medications that might help with some of these “behavioral issues.” We’ll see. I am cautiously hopeful.
Here’s a picture of me when I was a little girl. My mother and I were visiting her parents (her mother was a lot like she is, now; her father was very stern and distant). We were all out on my grandfather’s boat, on the St. John’s River. The adults are enjoying their evening cocktails.
Here’s another wrenching (and guilt-inducing) comment (written by Cheri Miller) that I ran across in the NYT blog about aging:
“My husband and I have been caregiving for the past three years… for [my husband's grandmother]… She’s now 102… We’re still caring at home for Granny’s daily needs. She has no diseases, is frail, cannot hear, see or walk any longer, after her stroke, but she continues to live on and on and on… It’s changed our lives. We can never be away from home more than 2 hours. And, we have seven children to manage on top of this… But, at least she’s not in a home.” [emphasis added]
My 88-year old mother is intermittently irrational, but certainly in better shape (both physically and mentally) than the vast majority of patients in the nursing home where she’s been for the last three weeks. And the doctor (a geriatrician!) she has been assigned to at this nursing home has made no apparent effort (despite my urging, despite my complaints) to get to the bottom of Mother’s cognitive problems. Eventually, I took matters into my own hands, and hired a geriatric care manager. We’ll be taking Mother to a neurologist in a few days.
Meantime, I am faced with the daily task of trying to explain to my mother why she is in a nursing home, why she can’t go home… Her “doctor” has only seen her twice in the three weeks since she’s been there, and certainly has not explained to her that we are concerned about her poor decision-making… Over and over again, that little talk is left up to me. And my mother is not well-disposed to hear this from me. The problem is that she cannot seem to understand or remember new information that people tell her about her medical status, she does not follow through with medical (and dental) advice and prescriptions, and she often “fires” her doctors soon after she has met them. When she went into the hospital, a month ago, she had no primary care provider. She had fired them all. I am quite sure that this same pattern will start up, all over again, if she leaves the nursing home and goes back to her house.
This is how it is beginning to look, to me: unless I just give up my life, and take over my mother’s life, there will be no way to make sure that she is getting good medical/dental care (her teeth have been falling out, and she has refused to pay the dentists and oral surgeons… ). Nobody wants to be “in a home,” and I don’t think anybody really wants an elderly relative to be “in a home.” Even though my mother is, and has always been, an exceedingly difficult person to be around, I do not want her in a nursing home. Maybe my only real option will be to get my mother back into her house, with daily in-home care, and one of the bedrooms set up for the in-home care provider, if/when she needs someone there all the time… and the third bedroom set up so that I can stay there at night, too, if I need to.
And maybe that would be a total disaster. Once my mother is discharged from the nursing home she’s now in, they will have no obligation to take her back… and, given her dreadful behavior while she’s been there, I doubt that they would take her back. No good choices, here.
July 20, 2008: The Past Is Never Past. Part of this task of taking care of my mother involves cleaning up her house, and getting it ready for whatever is next. That business of what might be “next” is still unclear; it might be that Mother comes back to her house, with in-home care. Or it might mean that the house needs to get sold. Any of the possible scenarios requires that the house be cleaned up, and cleared out, quite a bit. So, every day or so, I go over there and check the mail, make sure everything is OK, and I do some clearing and cleaning. I keep on finding photographs that I have never seen before, and it’s pretty emotional, sometimes. Here’s one: My mother’s parents’ family names were McColgan and Delany. All of them came here, to the USA, from Ireland, long ago. The McColgans somehow ended up in Southeast Missouri; they were a prominent farming family back around the turn of the (19th to 20th) century. My great-grandparents had four daughters (plus a son who died in infancy): Reba, Ruth, Lee, and Erie (my grandmother). All the girls went to college. Reba never married, and she ran the farm after her parents died. The McColgans lived in Dexter, MO, and they had the first automobile in town, or so I am told. Here they are, probably around 1940.
I can hardly stop gazing at this old photo… These are my people. And they are nearly all gone. My mother, second from the right, is still living. She is holding hands with her grandfather, Papa (J.W. McColgan). He died before I was born; my mother absolutely adored him. It’s amazing for me to see the two of them, together. The only other person in this photo who is still living is my mother’s cousin, the guy on the far left. He is Gordon Porter Hill, of Sikeston MO. My great-aunts, Reba and Lee, are in the middle, along with Margaret, who was not actually a blood relative, but a part of our family, nevertheless.
And here’s another one I don’t remember ever seeing before; this is Rip, the dog who was around before I was born, and when I was a baby. He loved a ride in the car (picture taken around 1951).
Later (maybe 1966): my mother and I were on the beach in Florida, with the dog I grew up with, an Airedale named Ruff.
Crazy-Making: Yesterday I wrote just a bit about the emotional cost of being around a “difficult” mother. I referred to psychological phenomena called “projection,” and “projective identification” (*see the bottom of this post for definitions*). Although these processes are not well understood, it is widely known that certain individuals with mental/emotional problems sometimes express these problems by way of non-conscious interpersonal processes that can influence the emotions, and even the behavior, of others. Expressed in non-technical terms, the problem is that there are some people whose presence, behavior, and emotional states simply make others highly uncomfortable.
If your mother is such a person, you might wish to say to her: I love you, but I can’t tolerate being around you. You are making me crazy.
A couple of examples from my own life with my “difficult” elderly mother (and these are not recently emerging phenomena): If I tell my mother I am leaving on a business trip (or any kind of trip), she immediately displays great anxiety and unhappiness, and asks me where I am going. And then, regardless of my reply (it might be that I am just going somewhere close by, or it might be somewhere very far away) she responds as if I have said something shocking and unacceptable. I might say: “I am going to St. Louis.” She will inevitably reply: “St. LOUIS???” with a rising tone on the final word. This induces all kinds of negative emotions in me… I feel the need to apologize, explain, reassure her… and I also feel irritation, because her response is so unreasonable, and because it induces all these unpleasant emotions in me.
Another example: when I spend time with my mother, she typically tells me stories about how she has been mistreated by others. Many of these stories are obvious distortions, if not outright paranoid delusions, about people who in fact have been very patient and kind to her. She usually asks me what I think about the situation she has described, and/or what she should do in response to the imagined outrage. This places me in an impossible, and uncomfortable, dilemma. If I urge her not to retaliate against the neighbor (or doctor, or banker, or whoever it might be), then she becomes very angry with me. If I respond as if I believe the truth of her accusations, I feel as if I have entered some kind of twilight zone of insanity.
And one of the worst aspects of this type of mental functioning is that a person can live her whole (unhappy) life with these patterns, without being sufficiently impaired that anyone can effectively intervene. She certainly will not believe that she needs any sort of psychological or psychiatric “help”! Others will avoid her, and she will never understand why…
In a law review article about the Americans with Disability Act (ADA), Elizabeth Emens writes about the barriers to integrating people with mental illness into workplace settings. Here’s an excerpt:
“People often discriminate against those with mental illness… because of how those with mental illness make them feel, in ways that are intimately bound up with how people with mental illness themselves feel. Mental illness tends to produce what I call “hedonic costs”-an increase in negative emotions or a loss of positive emotions-in people with mental illness. And the hedonic costs of an individual’s mental illness may create hedonic costs for nearby others…
Hedonic costs based on “emotional contagion” form a peculiarly sympathetic and potent basis for discrimination. Emotional contagion is the process by which we absorb the emotions of nearby others through largely unconscious mechanisms. Research on emotional contagion suggests that people with mental illness are likely to cause others to share their negative emotions. For example, spending time around a person with depression-even having a short conversation-typically causes others to feel greater sadness and hostility. And studies indicate that liking someone makes the liker more susceptible to absorbing the other person’s emotions. Thus, someone who bears no animus towards people with mental illness, and perhaps cares about or likes certain individuals with mental illness, may for this reason feel an impulse to avoid coworkers and others with mental illness.” [emphasis added]
So there are good reasons why it can be difficult to work with people who have mental illness… And it is even more difficult if you like, or love, a person with psychiatric problems.
*Here are a couple of pretty good explanations of “projection” and “projective identification,” from the Cross Creek Counseling website:
“Attributing one’s thoughts or impulses to another person. In common use, this is limited to unacceptable or undesirable impulses. Examples: (1) a man, unable to accept that he has competitive or hostile feelings about an acquaintance, says, “He doesn’t like me.” (2) a woman, denying to herself that she has sexual feelings about a co-worker, accuses him, without basis, of flirt and described him as a “wolf.”
“This defense mechanism is commonly over utilized by the paranoid.
“A broader definition of projection includes certain operations that allow for empathy and understanding of others. Recognition that another person is lonely or sad may be based not upon having seen other examples of loneliness or sadness and learning the outward manifestations but upon having experienced the feelings and recognizing automatically that another person’s situation would evoke them.
“As in projection, the individual deals with emotional conflict or internal or external stressors by falsely attributing to another his or her own unacceptable feelings, impulses, or thoughts. Unlike simple projection, the individual does not fully disavow what is projected. Instead, the individual remains aware of his or her own affects or impulses but mis-attributes them as justifiable reactions to the other person. Not infrequently, the individual induces the very feelings in others that were first mistakenly believed to be there, making it difficult to clarify who did what to whom first.”
And here’s an excerpt from a website (“What Makes Narcissists Tick”) that explains, in very down-to-earth terms, how this process of projective identification typically operates when one partner in a relationship is pathologically narcissistic:
“Now and then, you’re bound to object to the degrading way the narcissist treats you. He or she will throw a fit at you for objecting, and there will be an argument.
Or… just relate to the narcissist as his or her equal; just behave as though you deserve consideration in some matter. Then look out. Uproar…
A narcissist just has to take a crap on someone every so often to feel better to about him- or her-self.
He knows just how to pick a fight. And when he wants to pick a fight, there’s no avoiding it, because… he will keep at it until he gets what he wants. He will work you into some kind of corner, demand something impossible of you there, and then throw a fit when you can’t do it…
During this fit, the raging narcissist projects his or her anger off onto you and accuses you of being the one who is “flying into one of your rages.” … That’s what narcissists do.
When narcissists pull this stunt, they aren’t using you only as a dumping ground for their toxic emotions: they are also doing their best to make you act out their fantasy that you are the raging maniac here. In other words, they are trying to enrage you. Get it?
That trick is called “projective identification.” … Indeed, when you’re trying to pacify a raging maniac, and she heaps insult on injury by mocking you with the accusation that you are the one “who got mad,” the one who’s “flying into one of your rages,” normal people do get angry.
Image by 7-how-7 via Flickr
On Friday my mother’s nursing-home physician finally, after more than 3 weeks in the facility, decided to spend some time with her to evaluate her mental status (and this is my mother’s primary medical problem). Despite my subsequent voice mail and email to the physician, I have (as of today, the following Wednesday) heard nothing from her. But I did just hear, from the nurse care manager that I hired (because I was getting NO help from the nursing home physician or social worker about the best course of action and level of care for Mother) that this physician had told HER that, in the physician’s opinion, my mother was competent to make decisions for herself unless/until a court appoints me guardian (and that process takes 6 months, and is extremely expensive). This is just after my mother complained to the staff because they took her “telephone” out of her room. She never has had a telephone in her room. They removed her nebulizer (for breathing treatments), because she has consistently refused to permit any breathing treatments…
Reportedly, the physician is now telling other staff members at the nursing home that I should not be permitted to make any decisions for my mother. And this is despite my durable power of attorney, and despite my mother’s psychotic state, her violent outbursts, and her frequent refusal to take her medication(s).
I am so very disgusted.
If my mother is competent to make her own decisions, then why does this physician not just discharge her from the facility, which is my mother’s oft-expressed desire?
I suppose I should be grateful that she has not done exactly that.
The nurse care manager urges me to be patient. We are still taking Mother to an outside neurologist today (this was our own plan, not initiated by the (idiot) nursing home physician, who–get this–is a board certified internist, with a fellowship in geriatrics).
This nursing home physician is known (I have learned over time) to her colleagues and co-workers as an “odd duck,” with an “unusual communication style,” a doctor who should only be given the most uncomplicated cases.
I am told, of course, that this physician is “very busy,” and I am very tired of hearing about how “busy” physicians are. This is just a euphemism for “important,” a reminder to all of us patients, family members of patients, and non-physicians in general, that the physician expects to be treated with great deference, like a little god… that his/her time is much more valuable than ours… and that we should be grateful for any interaction whatsoever with such a “busy” person…
Yeah. I am disgusted.
So, it is Alzheimer’s
. At least, the neurologist is “90% sure,” which at this time is all anybody can say, without better diagnostic tools. Finally, after 3 weeks of trying to get a proper evaluation of my mother’s cognitive functioning, yesterday she saw an excellent neurologist (one who specializes in geriatric problems). This never could have happened without the help of the professional geriatric care manager that I retained to help with my mother’s situation… and it took me quite a while to learn that such a thing even existed.
So I’ll give another major boost and thank-you, here, to the National Association of Professional Geriatric Care Managers (NAPGCM), and to the local company that I found through that organization: Creative Care Consultants, in Kansas City, MO. Gini Toyne, RN, at Creative Care, has totally turned this awful situation around. If I had just left my mother in the “care” that she was getting from the physician at the (supposedly excellent) nursing home, she would have been there (theoretically) until she died, without a proper evaluation, without being accurately diagnosed, on the wrong medications, and trapped in a place that she hated.
During our meeting yesterday, the neurologist, Ginny, a pharmacist, my mother, and I sat down together and agreed on a plan. My mother will go home, with in-home care provided through Ginny Toyne’s company; and she will be on the appropriate dementia meds (which are likely to stop the progress of the disease for a year or so), and OFF the meds that she does not need. Mother seemed agreeable (for a change!)… but bewildered. As we were walking out of the medical office building, she asked me to explain what was happening, once again. I said: “Next week, you are going home.” She leaned over and whispered to me: “Where is ‘home’?”
I know that it won’t be easy; my mother is likely to cause all kinds of havoc, because she does not like to have people in her house. She will accuse them of stealing… she will be verbally abusive. But we’ll cross those bridges when we get to them.
If you are dealing with an elderly parent, not knowing how to get the proper assessment, treatment, and ongoing care that your parent needs, I strongly recommend that you look for a good professional geriatric care manager. It is way too easy to get lost in the shuffle; to end up with a parent in a rotten facility; to have a parent who is receiving lousy medical care; and to find your whole life consumed, trying to put out fires, trying to monitor and stay on top of what’s going on with your parent.
Image via Wikipedia
Update on the elderly mother story: Tomorrow she is scheduled to go home to her house (not mine!) from the nursing home. That’s a major achievement for her, and also for those who have been helping her (me, and her care manager, and Kate, everyone who has been helping and providing all kinds of support). It also means that her house needs to be readied for her to live there, comfortably, with full-time in-home care, and believe me, her house was NOT ready for that. So it has been full-time cleaning out, sorting, re-arranging, buying some new things, getting rid of some broken furniture, boxing up stuff, taking stuff to Goodwill, trashing stuff that was obviously trash, etc. … And very time-consuming… in part because I keep finding old photos, old stuff that had been my grandparents’ (my grandmother’s diary from 1913! amazing! she was boy-crazy, apparently, and a real social butterfly), stuff that was my mother’s when she was young… Hard to just sort that stuff and put it away, without sitting back and looking at it, and that brings up all kinds of feelings. I could spend years going through all the photos, and digitizing and restoring them… Readers will probably get to see some of them in future posts.
My mother is sort of aware of her dementia, and sort of not. It is spotty, as I have always heard (but never before observed at such close hand). Now that she knows she is going home, she has been a lot less antagonistic… but that will change when she is back in her house, wanting to be totally in control of everything… We’ll see. Taking that bridge when we come to it.
MONDAY, JULY 28, 2008
Image by ccmerino via FlickrDementia, and Being Home
: I have always heard that dementia patients are much better off (cognitively as well as emotionally) in familiar surroundings. Here’s my small anecdotal evidence: yesterday I went to see my 88-year-old mother in the nursing home. She had been in the hospital for 2 weeks, then a nursing home for 3 weeks, and was just diagnosed with early Alzheimer’s. At the time I saw her yesterday, we had all told her many times, over four days, that she would be going home today; but, when I got to her room, I found her very distressed, because (a) she could not remember where she was supposed to go, today; and (b) she did not know where she was, right then. After a while, she calmed down and got somewhat more oriented. But she still could not really remember where her house was, or much about what it looked like. She asked me: “Tell me again, why did I buy that place?” And then she asked, “Is this really bad, that I can’t remember?” That question was harder to respond to…
Today, she really did go home… and when I spoke with her on the phone, a few minutes ago, she was annoyed because she could not find one particular book, the book she remembers reading just before she went to the hospital. She remembered the details of what went on during the day (today), and knew all the things that had changed in her house while she was gone, and also which things had stayed the same. And she remembered details of a story I had told her a few days ago, about something funny her dog had done at my house, while she was gone… All of that seemed remarkable to me, and I felt so glad, and so fortunate, that we were able to bring her home. I know that many, many Alzheimer’s patients simply cannot live at home any more… I don’t know how long this stage of her illness will last, but I’m happy that she gets to experience some happiness and freedom in this stage, and, especially, being home, now…
Haven’t been posting much lately, this has been an odd period of waiting-to-see for me, since my mother went from the nursing home back to her house. She has “mild” dementia, and that stage of the disease (very likely Alzheimer’s) has its own set of challenges. In some ways, “mild” would seem to be a really good adjective to have in front of “dementia.” And of course it is a good thing; but it also is a time of changes, a time of very difficult adjustments, and a time of confusion both for patient and for caregivers.
Sometimes my mother seems completely “normal,” conversing the way she always has. And, certainly, she believes that she is “normal,” and is complaining more and more loudly about the presence of caregivers in her house. Yesterday, because she was doing well, we cut back from 24-hour care down to 18 hours per day of in-home care, so that she has from 3pm till 9pm on her own. And, when I called her at 6pm, she demanded that I go over to her house to “turn down the refrigerator… because it is old.” Also, to turn off the TV… she could not find the “off” button on the remote. When I told her I would not drive over there to turn appliances on and off, she became very angry… and another of my old dilemmas presents itself anew. If I begin driving to her house to “turn down” the refrigerator, and operate the TV, then soon I will find myself there all the time, changing channels for her and turning her thermostat up and down… and of course I can’t do that. And, also of course, my mother is and will be very angry about that.
So, from day to day, we’ll see what challenges arise. And I will try to address only the ones that are right in front of me, avoiding the temptation to jump into the unknowable future and the scenarios that I fear will unfold.
Taking care of elderly parents is difficult under the best of circumstances. And by “best,” I mean various things: having sufficient funds to get necessary care and medications is of course a huge factor; another really major factor has to do with whether or not the elderly parent can or will accept care, and cooperate with doctors and caregivers. Sometimes, as with my mother, dementia is complicated by pre-existing personality problems. An elderly person who has been suspicious and controlling all her life is not going to suddenly become docile and easy to get along with, when she gets dementia. If she was critical and somewhat mean-spirited before she became demented… well, that probably isn’t going to get any better.
A lot of older people in nursing homes become agitated and uncooperative, and engage in behavior that is disturbing to other patients (and staff); when this happens, they typically get some kind of anti-anxiety or anti-psychotic medication, to slow them down and calm them down. It more or less works… and it more or less turns them into zombies. There is a lot of debate about how to handle this problem; a recent NYT article provides an eye-opening discussion. Here’s an excerpt:
Many doctors say misuse of the drugs is widespread. “These antipsychotics can be overused and abused,” said Dr. Johnny Matson, a professor of psychology at Louisiana State University. “And there’s a lot of abuse going on in a lot of these places.”
Dr. William D. Smucker, a member of the American Medical Directors Association, a group of health professionals who work in nursing homes, agreed. Though the group encourages doctors to conduct a thorough assessment and prescribe antipsychotics only as a last resort, he said, “Many physicians are absent without leave in the nursing home and don’t take an active role in the assessment of the patient.”
Some nursing homes are trying a different approach, so-called environmental intervention. The strategies include reducing boredom, providing intellectual and physical stimulation, exercise, calming music, bringing in pets for therapy and improving how the staff approaches and talks to dementia patients.
At the Margaret Teitz Nursing and Rehabilitation Center in Queens, social workers do life reviews of patients to understand their interests, lifestyle and former occupations.
“I had a patient who used to be in fashion,” said Nancy Goldwasser, the director of social services. “So we got her fabric samples. And she’d sit and look through the books, touch the fabric, and it would calm her.”
But such approaches are time consuming, they do not help all patients, they can be prohibitively expensive and they will be more difficult to provide as Alzheimer’s continues to increase.
“Our health care system isn’t set up to address the mental, emotional and behavioral problems of the elderly,” said Dr. Gary S. Moak, president of the American Association for Geriatric Psychiatry.
Nursing homes are short staffed, and insurers do not generally pay for the attentive medical care and hands-on psychosocial therapy that advocates recommend. It is much easier to use sedatives and antipsychotics, despite their side effects.
My mother, who I just recently got back into her house from the nursing home, did pretty well with 24-hour in-home caregivers, for a little while. Then, after just more than a week, she began “firing” the caregivers, and being really nasty to them. The care manager and I now have some difficult choices. Put her into a psychiatric facility, against her will, to see if there is some medication regimen that will calm her enough so she can stay in her own home? Or, for now, let her stay at home, mostly on her own, and see if she will take her medications and eat properly?
I am very much afraid that we will find that she is not going to be able to stay in her own home, because her dementia, on top of her pre-existing personality problems, make her so incredibly hard to deal with that no caregivers will stick around for the inevitable abuse and refusals to cooperate. If I had to choose, I would rather have her at home, and taking enough antipsychotics to slow her down some, than in a nursing home; but if she is in her own home, and refusing to take medication, then we (my mother and I) are in real trouble.
Delusional beliefs do not usually arrive out of nowhere. They are created like a montage is created, with scraps of items gathered together on the same page, in an idiosyncratic fashion, with some identifiable truths blended together with alarmingly strange interpretation of those true facts, and with new “facts” created out of whole cloth, and added into the mix to pull the whole concoction together into what feels like a Whole Truth, which then can be clung to against all assaults by others who seek to “clear things up” for the delusional person…
There’s an interesting account written by a psychologist who also has suffered delusions, about his own psychosis. MindHacks wrote it up (here), and you can find a link to the entire paper, here.
My elderly mother is paranoid, delusional, and creates stories in that way. Along with the paranoia, she has the forgetting that comes with early Alzheimer’s, hence the need to manufacture “facts” to fill in the blanks, and these new “facts” are woven together with bits of “real” reality (that which others agree upon) and her paranoid interpretations, to create her reality. What is so very sad is that in her reality nobody will help her, everyone is trying to do something bad to her… she fires all her caregivers, calls the police and accuses her neighbors of dumping trash in her yard, contemptuously accuses her only living relative, her daughter (me) of stealing from her, refuses to allow this daughter to take her out shopping, and sits alone all day and all evening. When asked, she will say she is lonely. It breaks my heart. So long as she is doing nothing overtly dangerous to herself or others, no one can compel her to accept caregivers in her home, and nobody can force her to participate in psychiatric treatment (which isn’t all that likely to be effective, anyway, in this situation).
Had to put my mother in a psychiatric hospital on Friday. She became violent, hitting and kicking me and one of the caregivers who had just stopped by her house. She had stopped taking her medications. Now, since it is a 96-hour involuntary commitment, she will have a right to a hearing, on Monday or Tuesday. It will of course be incredibly distressing, both for my mother and for me. She only lasted in her home, with full-time in-home caregivers, and taking her medication, for about a week. I don’t know if she will ever be willing/able to live at home again, unless we just let her live the way she has always lived, before… doing exactly what she wants to do, with no interference from anyone. And if we were to do that, it would soon be a case of elder neglect, because she just can’t (or won’t) take care of herself. My mother now hates me (she looked me in the eye and said to me: “I will hate you forever,” and then she hit me in the face, again), because (in her eyes) I am taking away that which is most valuable to her (her capacity to control her own life).
My mother is still in the psychiatric hospital, and it’s not going well. She went in, a week ago, walking and talking coherently, with some paranoia, and a lot of anger (hitting me and one of her caregivers). As of yesterday, she was unable to walk or stand unassisted, she was catheterized, and constantly hallucinating. I am no longer being patient with the business of how (as I have been told by the staff) she is supposedly “getting used to her medication changes.” My mother’s private care manager and I decided yesterday to give them 24 hours to get her back on track, or we are transferring her to another hospital. This has been awful. Mother is aware of the fact that she is not doing well at all, she knows she has gotten worse since she went in to this hospital, and she is scared. Oddly, she doesn’t seem angry right now… I am doing that part, for her…
This has been my longest-ever period between posts, and I’ve been feeling a bit guilty about it! I will get back to regular posting tomorrow (by “regular” I mean with some science news and commentary, because there is some good stuff out there I have been saving up to talk about here).
Meantime, just a quick update on the ongoing story of my elderly mother, which has been a major focus of my attention and my emotional life during the last 3 months. We are now in the land of Alzheimer’s, in the early-to-middle stages. Hard to tell, really, how to “stage” this stuff. In some ways it seems that the progression of her disease has been quite rapid; only 3 months ago, she was living on her own, paying her own bills, etc. Now, that is unthinkable; but on some days, when you talk with her, she seems just “fine.” But that doesn’t last, and if you talk with her more than 5 minutes, you realize that (even at her best), she is never fully oriented, she always has some confusion about her situation, about what is real and what is not. And a couple of days ago I spoke with a nurse in the psychiatric hospital (where Mother has been for the last 2 weeks), and she said that it appeared to her that Mother was approaching “end stage.” She was suggesting that we get hospice involved. I was quite startled. Of course, her psychiatrist has been impossible to talk to; as usual, the physicians are so “busy” that they don’t have time to talk with the patients’ families. That’s one reason that I hired a professional care manager; she is a nurse, she knows this guy, and he is willing to talk with her. I don’t know what I’d do without her. I hope we can sit down and talk all this over (my care manager, the psychiatrist, and me) some time this upcoming week…
Anyway, at this point everything is, again, up in the air. Don’t know if or when Mother will get to go home; and if everyone thinks that “home” will not work out for her, even with 24-hour care (because she is SO uncooperative), then I dread to think of what the alternative(s) might be.
If you took a small sick child to the hospital for care, and if during her hospital stay, you never once saw her physician; and if, one day, you were simply informed by a social worker that your child was “ready to go home,” without EVER having talked with the physician, without being told your child’s diagnosis, without being given her prognosis, without any recommendations for what direction her future care should take… how would you feel?
This is TYPICAL for those who have elderly, demented parents in hospitals and nursing homes. This is what just happened once more, with my mother. Is it even remotely possible that any physician can fail to understand the importance of talking with family members when the patient is incapable of learning new information? Is it possible that a physician can feel s/he is providing adequate care by simply discharging an elderly, demented patient without EVER speaking a single word to the patient’s family member(s)?
I have visited my mother in the psychiatric hospital nearly every day for 2 and a half weeks. I have never seen her psychiatrist. I have repeatedly left notes and messages asking him to call me. He has failed/refused to do so. Now, he informs me (through the social worker, who appears to know nothing about my mother or her condition) that she is “ready to be discharged.”
What I hear from everyone who finds himself or herself engaged in the daunting task of helping elderly parents is that geriatric medical care is a gigantic black hole, within a system that is fairly lousy, overall. Young med students and residents do NOT want to engage in the care of geriatric patients; it is not sexy or prestigious, and it does not pay well, and it requires qualities such as patience and compassion.
Once again, I am just disgusted.
Mother’s hemoglobin was dropping, and she developed (another) bad cough, so she’s back in the (regular) hospital… Been here three days now, transferred from the psych hospital. Prognosis very very uncertain. Spending days and nights in the hospital. This morning she seems better; she’s angry with me, which is her normal state.
There’s a new concept in Alzheimer’s care, involving small group-home settings. After many painful detours, I learned about these facilities, and managed to get my mother placed into one of them about a week ago. In the Kansas City area, and elsewhere in the country as well, one of the companies that runs these homes is called Comfort Care Homes
. Here’s a short blurb from their promo materials:
When dealing with memory loss disorders, bigger is not better. In fact, it’s quite the opposite. That’s why a ComfortCare Home will typically have only six residents sharing a real home with a well trained and compassionate staff of care givers. In this low stress environment, we offer a level of personal attention and professional expertise far beyond what your loved one could effectively receive in their own home.
Our care focuses on one class of disease: Alzheimer’s disease, stroke, Parkinson’s and other dementia-related diseases that result in memory loss. ComfortCare Homes has duplicated this concept of specialized long-term Alzheimer’s care in 20 single family homes located in Wichita, KS; Kansas City; Omaha, Nebraska; and Richmond, Virginia.
Our geriatric care manager recommended this route to my mother and me, and I have been extremely happy with what I have seen so far, and with what my mother’s experience has been. She has a big bedroom in a lovely house in a residential neighborhood. She has her own furniture in her bedroom, and her bathroom adjoins the bedroom. There’s a back yard with a smooth, paved walking path (and a fountain) that she can use whenever she wishes. There are only 4 other patients in the house, with a full-time CNA/CMA (someone who can administer medications) on site all the time, and an RN half-time on site, and on call at all times. There’s a physician who visits the home to see patients, as well as a hairdresser and podiatrist. Meals are cooked right there on site, and served family style. Snacks are available all the time. Every time I have visited (and family are invited and encouraged to come at any time, with no need to give notice in advance), all the patients have been up and dressed, and never appear to be in any distress. There have been no unpleasant odors. It’s been quite a wonderful alternative to what I have seen of (a) nursing homes and (b) “memory care” facilities run by big corporations.
If my mother begins to require more care than can be provided with the regular staffing, I will be able to hire additional staffing to take care of her on-site; nobody will tell me that I have to “come get her” because her level of need is too high. This is extremely important to me; in the last 3 months or so, my mother has been in 3 different hospitals and one nursing home, and it is extraordinarily stressful for her, mentally and physically, to be moved from place to place. My hope is that this will be her last stop. She is still having her ups and downs, but after only a week, she said to me: “This place is really nice. I think I should just stay here.”
The difference between this place and a nursing home is dramatic. It’s also very different from the larger corporate “memory care” facilities, where the amenities are beautiful, but the care is very spotty… and can be tragically inadequate.
Mother is doing very well there. Here’s a picture of her, taken at a party they held at her new home, a couple of weeks ago. I haven’t seen her smile like that…. in years!