Many caregivers have commented in this blog or in personal emails that—even in quite severely demented people—the essential “person” seems to remain. Lee Ann Gerleman writes that the people she cares for are still in there, even though we only get a glimpse of them from time to time.
What it’s like for them? Who is that person behind the mask of severe dementia? How do they experience themselves?
In the novel Still Alice, Alice Howland, a 50-year-old internationally-known college professor, tells (from her own point of view) the story of her journey into dementia. As she loses more and more of her memory, there is no sense that she experiences herself differently. Eventually, her husband becomes the “kind stranger” who walks her home and her daughter becomes “the woman in the red dress.” It’s a powerful story … and believable, but the question remains: What is her experience of her self as memory fades?
As I described in my last post, I’ve lost more of my ability to think than I’d previously thought, but I don’t, as yet, experience my “self” any differently. Self is tricky to define, but, to be academic for a moment, the dictionary takes a crack at it, defining self as my essential being. It’s completely subjective; only I can know my essential being. Cognition, on the other hand, includes knowing, remembering, judging, and problem solving. My self is what I am; cognition is my abilities, which can be roughly measured objectively.
It’s the sense of who I am that hasn’t changed. It’s as if my self looks out at all the cognitive limitations from behind a curtain, is aware of them, but doesn’t have any sense that this “I” behind the curtain has changed. Here in the present moment, I seem no different than I ever was.
True, I am early in the disease, but since I’ve already lost so much cognitive ability, you’d think that I’d already be experiencing myself as at least somewhat changed. Will my essential being seem any different when I can’t remember Marja’s name? Who will this “I” be then? And if my self is going to be different, will that change be abrupt or gradual?
I thought about it again this afternoon as I walked with a friend I’d known for thirty years. Although we hadn’t been close, she seemed to know me (probably because I come from her more distant past). Four times within a few minutes she asked me how old I was. Each time I answered, 68, she stared at me with a twinkle in her eye and said, “You look so young.” Clearly she was still there but it also seems to me that she experienced herself as she always had.
I suspect that much of the cultural fear of Alzheimer’s is that we’ll lose our selves. But what if we won’t? What if the I persists beyond memory and mental capacity? Wouldn’t that be interesting! Would it decrease our fear? What might it reveal about the nature of human consciousness?
Gr, I just wrote out a long post, and lost it. Tried to back up one page and it wasn't there.ReplyDelete
I think the self is whatever spark or piece of you that sits behind your eyes. Whatever that is that looks out of your eyes.
I was reminded of the movie "Being John Malkovich" or whatever that movie was about this guy that had a little door in his home, and when he went into this little door, he was seeing out of John Malkovichs' eyes, and telling him what to say and do.
When I notice residents being themselves is what I go to get them up in the morning. We all have our routines. One, I wake her up with a backrub. She stretches, points her toes, "mmmmm, that feels so good." then opens her eyes. She has probably done the same things for the last 80 years.
Another one doesn't want to get up, "What can I do so that you will get up?" "Milk those damn cows for me." "Okay." So she gets up, happy that she doesn't have to milk, she just has to get up for breakfast. The same little spark in there has been there since before you were born. And that same "self" will be there until you die. If you think of it as your soul, maybe that's the part that goes on after death. Its always been there. The part that sings, laughs, loves, grouches, smiles, That part was there when you were a week old. When people say, "he was such an easy baby." They are talking about the guy that was "such an easy pleasant person to be around." I don't think our basic spark ever changes.
Thanks, Lee Ann.Delete
I, too, have lost a couple of the comments I've tried to make. If you don't click on the "Publish" button before you leave any page, you lose it forever, even if you click on your browser's "back" button. When I'm writing the original post, Blogger will warn you that you'll lose your content before it allows you to go to another page. It's frustrating that they haven't done the same for the comments.
Your comments about the self make me realize that by asking about it I've stepped into a philosophical briar batch that goes back thousands of year. Perhaps you or another reading will solve the conundrum. :)
These are really beautiful, thoughtful, hopeful questions you ask, David. Thank you.ReplyDelete
I don't know about losing "ourselves", what I think is missing in the advanced Alzheimer's patient is their personality...my mom was so bland and quiet..she just had nothing to give back when you spoke to her. I missed her warmth, her loving ways and humor.ReplyDelete
You're pointing out the important difference between the patient's experience of self and the experience that everyone else has of that person. It seems to me that the caregiver has by far the toughest time in this disease, in part because of the very loss you're speaking about.
What I'm curious about is what your mother's experience is. How does she see herself? Has her consciousness changed? Does she know it (probably not)?
My mom has been dead for a long time, but to answer your question, she did not seem to be aware of her situation. In the beginning, maybe the first year, she was irritable and sort of frantic (calling me over and over and repeating my phone number many times because she was afraid she would forget it etc.)Delete
Later, and all too soon, she became non-verbal and only said a few words now and then. I never felt she was worried or sad after the early years.
This comment has been removed by the author.ReplyDelete
I agree with you that Lisa Snyder's "Speaking Our Minds: What It's Like to Have Alzheimer's, Revised Edition" is an excellent book to get some sense of the broad scope of the Alzheimer's journey.Delete
David, do you happen to have a copy of my comment you heavily edited? I think it would be valuable for my "road map" and of course didn't think to save it myself.Delete
Rebecca, could you communicate with me directly through email? Go to website davidhilfiker.com and click on the contact button on the lower left and send me at least your email address, and I'll get back. I'm not sure what you mean by: "the comment you heavily edited." I don't edit people's comments; In fact the program doesn't allow me to do it. I do have the post that you've deleted above. Anyway, contact me and we can get it straight.Delete
David, at the end of your post you ask if having dementia will decrease our fear. Based on a recent experience, I would answer “probably yes” at least for some people. An 89 year old relative of my husband’s had a number of phobias, and refused during her lifetime to go into tunnels, fly in a plane, or go over long bridges. Needless to say, she rarely left her home area. She also obsessed about wrongs that other family members had done to her, and could exhibit some paranoia. I spoke with her regularly until another relative had her phone number changed, claiming that this was what she wanted so that people wouldn’t bother her. He refused to give the new number to her rabbi, and to all the relatives with whom she had been in touch. Before this happened, he took her out to eat every week and bought her food, etc, because he lived closest to her, so it seemed he cared about her. The other relatives complained to him about the lack of contact and wrote directly to her, asking her to call them and giving her their addresses and phone numbers, but she called or wrote nobody. Last month I heard that her nephew had put her apartment up for sale and was moving with her to Turkey, where he planned to retire. Knowing that she feared planes, I drove through New York City to try to see her and check her status. I arrived at 7 am, and she let me in, though she had no idea who I was. She seemed very happy but very confused, and was alone in that apartment. A caretaker arrived at 9:30 with breakfast, and said she came every day from 9 am – 6 pm, and made sure she ate. Nobody was with her all day Sunday or from 6 pm until 9 am. I had made a report to Adult Protective Services, who sent a social worker to evaluate the situation. Later a forensic psychiatrist came as well. My husband’s relative had no idea how old she was (she thought she was 7 years old) and scored very low on the mental status exam. She had no idea what a birthday was or a social security number. The aide had requested 24 hour care for her but the nephew told her it was too expensive. The odd thing is, this elderly woman, forgetful and confused as she was, seemed very happy – even blissful - and childlike. She hugged me repeatedly and invited me to move in with her so we could be together. She was willing to fly in a plane to Turkey, although I know she had no idea what that meant, and I am sure her phobias and paranoia were long gone – she didn’t remember she had those fears. The unfortunate aspect to this story is that her nephew had managed to get power of attorney, had all her mail forwarded to himself, and stole all her assets, well over two million dollars. Although the state of New Jersey had a hearing and ordered 24 hour care, that the sale of the apartment be stopped, that the elderly relative not be taken to Turkey, and that the nephew pay back 2 million dollars in 30 days and make a full accounting of her estate, he fled to Turkey with her money anyway. When I tell this story, which is abbreviated here, most people have a similar tale of theft and abuse of a vulnerable person with dementia. So although losing fear can be a positive thing, losing judgment and suspicion may be a danger if the person with dementia does not have protection in place. Something for all of us to consider!ReplyDelete
There are two parts to your story, one of (sometimes) beauty and the other of ugliness. For many people with AD, it seems that, especially toward, the end can be very beautiful, for both caregivers and the patient. Yours is a wonderful, beautiful story of such an outcome.
And we all need to be aware of how vulnerable these folks are to predators. These are the kinds of things that can tear people apart. I choose to trust other people, but there's no question that I'm gonna get ripped off from time to time, and this brother is a prime example.
Thank you for sharing the story.
My mother and mother-in-law both had Alzheimer's and are both gone now. Their personalities changed so much. My mother-in-law who was always so very refined, became so prickly. She lashed out at anyone close to her in the most unrefined way.ReplyDelete
My mother went the other way. Before Alzheimer’s we never got along, but afterwards it seemed she forgot that she didn’t like me and was so sweet to me. My aunt just sent me a picture of her and I could tell before I even looked at the date on the back that it was after Alzheimer’s. She had such a happy, almost joyous look on her face. Before, she was usually very stern.
Did they change? Or did their ability to mask their true feelings change?
I've often wondered the same thing: Are these personality changes that some people go through their "true feelings" coming out because of disinhibition or are they more organic changes in the brain itself. My suspicion is that it's some of both. It seems that in many of the stories people have shared on this site, if there is a period of anger or "prickliness" at some point, is often followed toward the end by a more peaceful time in which relationships can be quite rewarding.Delete
Thanks for sharing.
For your and your readers' interest, another very good novel about Alzheimer's is Scar Tissue by Michael Ignatieff. In this book, the main character, whose elderly mother develops Alzheimer's, explores whether his mother's essential self is still present as many of her abilities fall away. It is a sad but beautiful story.ReplyDelete
Jeannie, thanks for the book recommendation.ReplyDelete
I am still my ESSENTIAL self. But...
my lifelong short temper is no longer properly kept in control. I've lost my lifelong occupation which was my identity that I loved. People treat me like an idiot even though I'm still smarter than most of them. No, I don't like my life now, even if I am still the essential me. I've worked hard my whole life to overcome a horrendous childhood and crushing self-doubt but only succeeded because I was an exceptionally intelligent and capable person. No more. My essential is a short tempered, foul mouthed, opinionated person who has never believed in herself. Gee, I'm so glad all my previous life-long attempts at overcoming this have reduced me to my ESSENTIAL person.
I remember this phase of AD as my mother went through,Delete
I can hear your anger, and I feel what I felt when my mother was so frustrated. I will pray/meditate for peace for you because that was all I could do for her.
Great question, and I'm not sure you answered it. I know you want to never lose your 'self.' I've wondered the same question as I watch a good friend's husband slowly lose his verbal 'self' with Alzheimer's. We have no way of knowing if his self is the same. A few years earlier, he noted to another friend that he'd not want to continue to live if he lost his 'self' through this disease. Does he still feel that way? Hard to know.ReplyDelete
What a great post. I never thought about the remote possibility that perhaps the evil disease might not take the self of the person with Alzheimer's. My sweet husband of 47 years is moving from mild to moderate, but he is still himself in so many ways. I cherish every day.
My experience with my mother in the last stages of her Alzheimer's disease suggests that something of the self can remain for both the person with the disease and those who are close to the person. I lived in another city, and my siblings and I took turns visiting my mother, but I usually saw her one week out of every eight. Each time I visited she displayed her innate sense of being a nurturer. She was confused about where I lived and where I stayed when visiting, and she persisted in fussing over where in her skilled nursing facility she might find a bed for me. She also kept expressing concern that I needed food, even after I told her I had eaten. She was a mother, concerned about the welfare of her 60+ year-old child till the very end.ReplyDelete
What I'm struck by in so many of these stories is how individual they are. One of the delights of this blog for me has been discovering that even as "the lights go out," we're still here, often in our individuality. Like the rest of being a person, I suppose, it is in the end a mystery.Delete
the lights are beginning to go out for my 89 year old sweetheart (with Parkinsons). Just beginning. But I am certain that he continues to experience himself as unchanged, even as he knows he "forgets" things.ReplyDelete
David: We were in Intensive Directed Studies together at Yale in 1962-3. I also became a physician and specialize in geriatric psyhiatry including directing the Memory Disorders Program at Baystate Medical Center in Springfield, MA. I heard about your situation and how you are coping with it and have been impressed by your insight and ability to cope. If there is anything I can do to be helpful please don't hesitate to call or write.ReplyDelete