For the past two posts I’ve been trying to circle around this terrible stigma that hangs over Alzheimer’s disease and creates so much isolation and suffering. I’ve been trying to figure out what the stigma is. Why do people draw away? Why is this common disease such a mark of disgrace that brings shame and embarrassment to so many who are associated with it?
But after spending many hours on this post, I’ve decided I don’t really get it. I don’t personally experience the stigma or shame myself, and I don’t think I know much more than anyone else about why other people feel that way. I’ve gotten lots of comments, each offering different perspectives that may be part of it. As I wrote about in the first post of this series (Embarrassment (1)), people feel embarrassed because they don’t know what to say or do; they imagine themselves in similar situations and become afraid; perhaps they detest a human being who has lost control over himself. I don’t know any more than I’ve already written.
But let me tell you just one story about the stigma.
Even the word, apparently, is unspeakable.
A week after a lengthy feature article about my Alzheimer’s came out in the Washington Post, I was at a large function with many people who knew me fairly well, hadn’t previously known about my diagnosis, and yet had seen the paper.
Perhaps thirty people approached me to talk about “the article in the Post.” They referred to “your condition,” they asked “how are you doing,” or said to me “how courageous you are,” but not a single person among the thirty mentioned the word “Alzheimer’s.” I knew I had Alzheimer’s; they knew I had Alzheimer’s; I knew that they knew; they knew that I knew, but the word itself remained unspoken.
What you are experiencing is a different emotion – fear. This is the same reaction people have to cancer. People are forced to stop and consider their own mortality. If this can happen to him – yikes! – it can happen to me! People fear death. Alzheimer’s is especially feared because it is viewed as an undignified death.ReplyDelete
The villain in the Harry Potter books is so feared that it is considered dangerous to even speak his name, so he is often referred to as “He Who Must Not Be Named.” Perhaps Alzheimer’s should be referred to as “It Which Must Not Be Named.”
You are absolutely right that fear is a big part of it. For me, it's not so much death but the long, undignified death.Delete
And it's also that period much before death when it's not so much fear as embarrassment and shame.
I like the Valdemort image: "It which Must Not Be Named."
I wonder if some of it may also be related to courtesy and/or uncertainty about the appropriate degree of intimacy.Delete
It is one thing to blog about this (in your pajamas, etc., etc.), another to lecture publicly about this, and yet another to discuss this in one on one, especially in a public situation. Not only may people who have read only the WP article not be aware of your attitude, your approach to your having alzheimer's (as expressed on this blog), but it may well be that your attitude varies from situation to situation and person to person. Avoiding the word "Alzheimer's" may be a courtesy, an attempt to follow your lead in addressing "Your condition." Perhaps if you used the word first, they would follow your lead. OTOH, perhaps they are frightened and it is courtesy on your part to follow their lead.
Alphonse and Gaston...
Even if I knew you but we were not close, I would likely be reluctant to be too direct about it, preferring at least a mild euphemism without some indication from you about your preference (which may be one thing with me and another with a close friend). I would worry about imposing on you.
You are certainly right. On an individual level, most of the folks who don't mention the name (or, often, even the problem) of Alzheimer's or dementia want to be sensitive to me and not overstep the bounds of courtesy and or appropriateness. So as individuals these folks are being considerate and should not be criticized.
And if I have seemed critical of any one of them, then I have been (perhaps understandably) misunderstood.
I think you could say the same reluctance is present with cancer or losing a leg in combat. There are social inhibitions about mentioning those problems specifically. (I suspect those inhibitions are there because we're uncomfortable talking about ANY condition that leaves a person less than whole. If I'd had appendicitis, however, there wouldn't have been any social reason not to mention it.)
But the point remains: Why are they concerned to be inappropriate if they've read a major newspaper story in which I'd publicly talked about my disease, and even mentioned this blog? Toward the end of the thirty interactions, I mentioned in the posting, I remarked specifically about my observation that no one had used the word. Even then, in the remaining minutes of our conversation they still didn't say the word itself.
But your point remains, the reticence comes, at least partly, from not wanting to be socially inappropriate and from not wanting to make me feel worse. I certainly shouldn't criticize them for that.
Some of my hesitancy in mentioning my diagnosis to others is the same as you have mentioned in your previous posts. "Well, maybe it isn't Alz." Maybe it's just a "senior moment" etc. "I shouldn't attract attention or alarm people"..etc. It is kind of hard to get a definite diagnosis short of a brain autopsy (which I am signed up to do because of the study I am in.) But I do have subtle cognitive changes that showed up this year in the annual testing. Recently during an icebreaker in a group I was participating in, I noticed several people had a difficult time identifying something they had just written when it was re-read out loud to the group. There was a lot of nervous laughter and teasing and joking about this. I was able to remember what I had written, but wondered if some there, were experiencing the confusion that comes with this diagnosis. If this is the case I wonder if they have realized what may be going on with them. It was not a supportive environment to have a discussion right then, but I may seek them out. It is possible to deny, deny, and deny and in the process miss out on the benefits of preparing and the support that is available. I agree that it is about fear.ReplyDelete
Yes, the fact that mild cognitive impairment can't be definitively diagnosed until autopsy makes it much more difficult to put the fact of our own Alzheimer's out there. I have sometimes wondered what I'd feel like to be so far out here publicly and end up not having it, but in some way that's the problem that all of us with mild cognitive impairment that is "almost certainly Alzheimer's. Personally, I think it's worth it, my anxiety be damned. But I certainly can't blame anyone else for choosing differently. Thanks for writing.Delete
The other response to my talking about my symptom and the other person will say, "Oh, I have that, too, obliquely denying the diagnosis. "meganthemegan," somewhere in these comments, says that she responds by seriously asking the person whether s/he has been checked out for dementia.
My wife has Alzheimer's Disease. She was diagnosed when she was 58. She is now 61 and is bed ridden and can barely speak anything that most of us would consider intelligible. I have been caring for her since 2008 and have lost my job during this period.
I struggle with this separation from our former life and the abandonment that we now experience. And from my perspective, there is a selfishness that exudes from those who have a friend or relative who is diagnosed with a disease that causes dementia symptoms. We don't deal well with long term illnesses. We are more of a cure culture, than a care culture. We of course want people to get better. If they don't, we are all at a loss as to what we should do.
At first there is denial, since they say, well, he/she doesn't seem so bad. (The tragedy of these invisible diseases.) But to me, once symptoms become more apparent in the person's thought patterns, speech, odd behaviors, it scares people. It is foreign to them. There is an unwillingness to understand this disease. They don't get it.
I remember when my wife started to forget her family members, one of her siblings said, what can we do about this? When the answer is nothing can be done, that this is the nature of the disease, they conclude that nothing at all can be done. So they give up. Why live in a foreign world, where someone speaks and thinks in a foreign manner? I know how my parents were treated because they had Italian accents. It was not a very nice experience as a young boy to witness the ugly side of human nature. People we once knew, who now have Alzheimer's Disease, are now foreigners and the exodus begins.
Until we come to terms that what we need to do is care for them, this will be the continued experience of those diagnosed with diseases like Alzheimer Disease.
The one thing that people with Alzheimer's Disease need is the love and care of others, and that is precisely that which is taken away. There is no greater tragedy that I can think of.
This is of course, just my 2 cents....
As Lee Ann Gerleman has written many times in these comments, there are new and beautiful relationships available with even moderately advanced Alzheimer's. Their world is just different, but it you're willing to visit, it can open up to profound relationship.Delete
The comments after this post continue to be quite remarkable. There appear to be so many sides to the abandonment: fear, embarrassment, scapegoating one who is "different," the oddity of it all, wondering whether it will be possible to "do" anything, denial, selfishness, unwillingness of understand the disease, our cultural disability to deal with illness that can't to be "cured." It's not a simple problem.
There are many things we can't cure (like old-age, for instance) but how we treat them makes all the difference in preventing suffering.
Thank you for your story.
My mom died from Alzheimer's disease almost 6 years ago. She was diagnosed many years before her death (more than a decade) so it was a long slow decline. During that time, for whatever reasons, I had an easier time relating to mom than most of my syblings. Some of them said outright "I want to remember Mom the way she was. This is not her anymore & it's just too sad." But it WAS her - she wasn't dead yet.ReplyDelete
Others reprimanded me for saying to her directly that she had Alzheimers or for giving an honest assessment of a situation. Such as:
Mom: Honey, what are we having for dinner tonight? Wait did I just ask you that?
Me: Yes Mom, you did just ask, but that's ok. We're having chicken & steamed veggies tonight. I'm just going to clean the vegetables, wanna help?
Mom: Yes I would. Why can't I remember things?
Me: It's because of your Alzheimer's Disease. It makes you forget things.
Sister: Shhhh! Don't tell her that!!
Me: Why not?
Mom: Did I do something wrong?
Sister: You'll make her depressed. And anyway, we aren't sure that it IS Alzheimer's. Just don't say it.
Denial is a powerful medicine. One with devastating side effects though. It's always been very curious to me. There was some embarrassment component to the conversations but I could never put my finger on why.
This is also an important post. "Shh, don't tell her that!! You'll make her depressed. ... And, anywa0, we aren't sure that it IS Alzheimer's. Just don't say it."Delete
Your sister hasn't considered the side-effects of NOT telling your mom her diagnosis, like confusion, depression, withdrawal, and others. Your mom wants to know why she is forgetting things; not to tell her why when she wants to know is just cruel. If your sister had her away, your mother would likely withdraw even more from crating more abandonment.
Whatever you do, just don't say it.
A fascinating post and fabulous comments!ReplyDelete
"Fear of a long, undignified death"
" We are more of a cure culture, than a care culture.... People we once knew, who now have Alzheimer's Disease, are now foreigners and the exodus begins."
"Denial is powerful"
When I'm confused over something, I go to the dictionary for the early root of the word. Stigma is from the Greek for tattoo or mark. The meaning is "a mark or token of infamy, disgrace, or reproach." The "mark" of Alzheimers is the loss of cognitive ability. At first, it's invisible but eventually, it becomes undeniable. The stigma, as you've written about in this series on Embarrassment, happens when the person with Alzheimer's himself feels disgrace, and/or when other people who don't have Alzheimer's see the disease or hear that he has it and feel fear. They are afraid of its curelessness, its capriciousness, the lack of medical and social protocols for care, and the ignorance of how to act around someone who has Alzheimer's disease.
If Alzheimer's were infectious, people who have it would be treated like those who had AIDS or leprosy in the early days - they would be banned from society. Even without this added dimension, people feel afraid and inept.
Two books that help me a lot in learning how to live with my husband's Alzheimer's disease are Ten Thousand Joys & Ten Thousand Sorrows by Olivia Ames Hoblitzelle, and Living Your Best with Early-Stage Alzheimer's by Lisa Snyder.
Thanks for these great posts and comments!
I can second the recommendation for "Ten Thousand Joys..." That book, and "How to Be Sick," by Toni Bernhard were very helpful to me.Delete
Perhaps the worst outcome of the abandonment is shame, which means that there is something fundamentally wrong with ME, not my mind, not my mind but my self, my soul.Delete
You may know intellectually why people have abandoned you, but your inner self may not be able to believe it as your friends shun you. Why, after all, would friends shun me if there wasn't something wrong with my self?
And some perceived abandonment is part of the short term memory loss. Some little old ladies will sadly say, "Nobody ever comes to see me anymore." And her family had put a noteook by her bed, so we would take it and read, "OH look, Linda was here this morning." "She was?" "Yep, she brought you a piece of Janey's birthday cake. it was coconut." "Oh yes, I remember!" some residents have a notebook to read through when they forget, some residents use us as their notebook, "Did Mary come yesterday or was it last week?" "Oh she was here this morning with pictures of the new grandbaby." "Oh yes. I remember." If one is forgetting that people do indeed still visit, it helps to reorient them.Delete
I did have one woman that was convinced that the nurses station was the Brooklyn Bridge and her babies were at home alone in Brooklyn, and we wouldn't let her cross the bridge and her babies needed her. I would let her come into the nurses station, and she would say, "This is not a bridge." but something fearful from her past was bothering her, maybe feeling that her babies didn't need her anymore. We didn't try to reorient them to the 21st century. We just reoriented them to the present. If they say this old man can't be their baby boy, we can direct their attention to what she remembered about that baby boy. Its impossible to change someone's belief system. But we can redirect it to be more comfortable. So its not always real abandonment that scares them.
One important thing you're getting at, Lee Ann, is that people with moderate AD often live in the present, and we need to find a way to live there with them. Trying to clarify the past is not a useful (or, probably, possible) path. It may take some of us a while to get skilled at doing this, but we can at least begin.Delete
When my mother was first diagnosed ten years ago we were overwhelmed with medical, financial and practical issues. We really didn't have time to be embarrassed. Mom did not seem to be embarrassed at all, and we told all those who needed to know about her dementia.
It is true that she has vascular dementia, which might be an easier term to hear. But it is virtually the same illness as it is lived out in daily life. We were so concerned about her that we had little time for the extreme sensitivities of others.
We were comfortable, and I think they took that as a sign that they could relax as well. We did have a few awkward encounters with people who did not know how to respond, but they were minor - and we told them not to worry - just relax. Some did and some did not. That's life.
Many people later told us of their own personal experiences of dementia among those they know. I do think hearing about it might have helped set them free.
The main reason, again, was that were involved in so many serious issues. It made it much easier than it would have been if we had thought too much about it.
This illness made it clear to all of us what is important. That is still true.
When I was a child, I was really nervous around older people. I didn't understand how I could talk to them, I didn't have anything in common with them, etc. I was always afraid of making them angry, or saying something disrespectful. I think that is part of the reason people fear talking to someone with dementia. Afraid they will get angry, misunderstand, not be able to keep up with the conversation, etc.ReplyDelete
Now that I have worked in quite a bit of long term care and special care units, I find that I can talk to anybody. Its very easy to talk to someone with dementia. And I wonder why I was so afraid as a child. People are the same, whether they have dementia or not. They like to talk about their kids, their homes, the past, weather when they were kids, their parents, just as any older person would. I have learned so very much in my life by discussing the past with residents where I've worked.
Since I was born in NW Iowa, left at 7 years old, and came back at 50, the old Iowa farmers are just like my family when I was a kid. I can sit with an elderly woman and discuss cobs burning in the stove, cob houses, tractors sent to town with a 12 year old driving to get groceries in the winter, all kinds of really odd things. And since I am 60, I am closer in age to the residents, than I am to the aides (usually in early 20s). The trivia I learn.........lol
I think that once a person has had a loved one with dementia, it is easier to talk to others with the same diagnosis. Take care.
Thank you, Lee Ann.Delete
It becomes clearer and clearer through all of your posts and many others, that meaningful and joyful relationships with people with Alzheimer's so our abandonment, while understandable, doesn't make any sense. What that means, it seems to me, is that if we can manage to bring this disease "out of the closet" then there will be little reason to abandon even the most advanced. We'll be able to reliably evaluate our friend's condition and modify our side of the interaction appropriately,
David, we were lucky in my family with my Dad's attitude to Mum's Alzheimers. From the age of 80 to 90, he was Mum's sole carer, and towards the end, when she became cranky and frustrated, he maintained his sense of humour. There were moments when we cried, but also moments when we laughed. As disrespectful as it may sound to others, some of Mum's comments and behaviour were extremely funny. Mum & Dad were married 67 years, and as much in love as ever. It was sad to see Mum's deterioration, but some of her behaviour was so unlike the "old" Mum, you had to see the funny side. My brother and sister found it hard to cope, but I guess we all react differently. I hope your family can act naturally around you as time goes on, as changes in others' behaviour can be confusing to an Alzheimer sufferer.ReplyDelete
My prayers are with you and your family.
What I hear in your comment is, it seems to me, important. You evidence no judgment of your siblings for their difficulties in coping. We are very different in our abilities to deal with change and strangeness. If we ourselves find it easy, or at least important, to be with the person with Alzheimer's, it's important to be grateful for the gift that we've been given and not judgmental of those who don't. Making others feel guilty will not change their level of comfort; they may visit but it will be resentfully and no one wins in that situation. So, let's welcome the gift and the limitations that we've been given and work to accept the gifts and limitations of others. Thanks for you comments.Delete
I think it is much harder on the family than it is on the patient. While the family can see the changes and the difference in cognition, the patient does not. I think the patient thinks everything is just as it was before, because they have forgotten much. It is, after all, 'The Long Goodbye'. When patients go into a special care unit, their families are usually very supportive, and come for all of the fun activities, etc. But about half the families then begin to come less and less, and I think it is because as the patient begins to move away more, the family adapts by moving away also. They are adapting to the changes in the relationship. Which is good for them. The other half seem to stay the same, even seeing the cognition changes, they are just happy to sit in the room and watch them sleep. So I think half naturally begin to with draw somewhat, as they spend more time out in the world. Its hard to explain. They don't love them any less, but they learn to change with the times and go out into the world more.ReplyDelete
One thing that was neat, a man used to come in to the unit, and go sit in his wife's room, in a chair by her bed. Every afternoon he would sit there with her. And I realized he was waiting for one thing. He would take her hand and hold it, and she would move her hand to intertwine their fingers. And he was content with that small remainder. she did this up until two days before she died. So healthy loved ones either 1. begin to move outward into regular life again, or 2. stay behind as comfort for themselves and their loved one. Either way, they have to move out into the world. but I believe that its when they are ready. I have tucked a husband into a hospital bed with his wife before. But he was very old and was never going to adapt to changes. So I pulled up the side rails and left them alone. While their kids sat out in the waiting room all night long. And I almost lost my job for that one. lol.
What a helpful idea! I could understand if some caregivers or third-party observers would consider this moving away to be completely selfish, but I would tend to agree with you. People need to begin to separate even from people they love. And when it looks like it's going to be a very long goodbye, who can blame them?Delete