Several comments on this blog have referred to this disease as “the long good-bye,” during which the person with Alzheimer’s gradually moves away toward a land into which friends and family cannot follow.
As the one with Alzheimer’s who will eventually move away, however, I experience a different sort of long good-bye … from the other side of the relationship, from a much earlier stage in the disease, and with joy rather than sorrow. I have the privilege to attend my own prolonged memorial service, so to speak, and receive from friends and family their gratitude, admiration and love while I’m still here and can drink it in. A good friend whom I see now only rarely sent me a long email last week, recounting several periods in our lives together in which my presence had been important to her and her husband, expressing her gratitude for my work with the impoverished and its impact on her life, and affirming the depth of our mutual relationship. In reading it, I was transported toward one of those “thin places” between our material world and the world of spirit and mystery.
Her email was especially beautiful, but others have written to express similar feelings and to reaffirm their sense of our belonging together over many miles and many years.
Strangers have written to describe the impact of my writings on their lives. Physicians who read my first book, Healing the Wounds, about the emotional and spiritual contradictions of doctoring, have written me about how deeply the book shaped their careers. Some are twenty-five years into their practice and have read of my Alzheimer’s, which has impelled them to write; others are college students in pre-med wondering if medicine is their calling.
Similar emails arrive regarding my other books, some of my writings, even speeches I gave at their medical school. Thirty years ago I wrote an article for The Other Side magazine about my depression and how it cast its black shadow over my search for God. After all these years, people have written to thank me for it.
These are the kinds of things we could tell each other any time, any day as we live our usual lives, but most of us don’t; it’s almost taboo … at least among men. I don’t think I speak only for myself when I say that we can go for years of deep relationship with another person without ever articulating our gratitude for who we are together, for our love for one another. So often we wait until the person is close to death—or, more often, perhaps, until that memorial service—before we dare articulate these beautifully human feelings of love and connection.
The taboo seems to extend to the one on the receiving end, too. Prior to my diagnosis, I was well defended, good at protective humility, at deflecting, at denying, or escaping these embarrassing moments of praise, or admiration, or love.
This long good-bye of Alzheimer’s, however, seems to weaken the taboo on both sides, evoking those expressions of closeness from others while I am still very much here and permitting me to allow the gratitude, admiration, and love to wash over me. My heart seems to have grown. I can listen gracefully. It is part of the wonder and joy of these months since my diagnosis.
In some ways I’m now in the best of both worlds: not much intellectual diminishment; yet lots more emotional openness. I’m very aware that profound intellectual loss will come later, but I wonder if this long good-bye is preparing us for those later times. I wonder if this period allows the softening of hearts—mine and those of friends and family—so that when I can no longer respond to their words or even understand them, when I don’t even know who they are, our hearts will then be prepared to love without concepts.
There is a mystery here, for which I am very grateful.
Very nice post. By Jove, I think he's got it! Very nice. I loved reading this. I am seriously thinking of copying it and taking it in to where I used to work. One of the aides in the unit lost her son, daughter in law in a motorcycle accident one year ago yesterday, and her other son and his wife lost a newborn baby six months ago. I think what you've written here applies to everyone's "goodbye", whether its a long one or a quick one.ReplyDelete
Nice blog and i like this alzheimer's blog this is very good but i need more info becous i am intresting in health blogs i study about many diseases in different blogs.ReplyDelete
Thanks for a excellent blog i visit again for more info
Beautiful, David! Yes! My son said, "This is not the long good-bye, this is just another take on reality". Also Lily Tomlin/Jane Wagner line "Reality is nothing but a collective hunch!" The ability to be VERY present is really wonderful. A youtube I put together of Rilke's poem, some Hawaiian slack key guitar (Makana) and pictures from a trip to Italy I put together a few years before my diagnosis and which really speaks to me now: http://youtu.be/_82q4J5gskIReplyDelete
You continue to surprise me by how many positive sides you find to AZ. Your positive attitude will serve you well as you go down this path. Thanks for presenting an interesting angle.ReplyDelete
And another good thing----- it doesn't hurt. Suffering from a dementia definitely doesn't sound like a fun time all the time. But being a hospice/nursing home nurse, I've often thought of what would be better, dying quickly in a car accident, etc. or dying of something that takes a long time, but I can say my goodbyes and tell everybody what I'd like to tell them. And I wouldn't want a really quick death. Because no matter how often you tell people you love them, when they're gone, its never enough. "Just once more." So if I knew I would be leaving, but still here, I could reinforce the things that are important.ReplyDelete
I had a good friend whose husband had just been diagnosed with ALS. I knew how ALS goes. He was just on SSDI, was beginning to fall a lot more often. She called me one day, in total grief, he had fallen over that morning from a massive heart attack, and they were unable to revive him. Understandably she was upset, but deep down, I was so happy for him that he didn't have to go through the ALS. Probably because I have seen nice nursing facilities, people in units that still feel loved and cared for, hugs and kisses are free, lots of activities, etc. I think that is a far better way.
Someone who is non verbal, laying in bed, turned and repostitioned, washed and cared for will always respond to a hug or someone holding their hand. I think language may go, memory may go, but love lasts forever (sounds like a sign, lol). They will always react to someone holding their hand, rubbing their arm, combing their hair. So when you really think about it, the Long Goodbye doesn't really sound so bad after all.
And sometimes forgetting things can be a blessing.Delete
My mother, a 2 pack a day smoker, gradually forgot to ask for cigarettes and didn't seem to suffer the withdrawal symptoms she would have had normally. Also, during her years with the disease she had to have one of her toes amputated. We were all horrified and we knew we couldn't explain to her what was going to happen. The day of the surgery she was completely unafraid and afterwards never even acted as if she was in pain.
The doctors explained that a lot of what we consider physical pain is in the brain and comes from what we are expecting. It was a blessing to see her handle this without dread.
After working for many years with folks dying with AIDS, I, too, have always thought I would prefer a death that was not sudden, that gave me and those I love to spend time together, so (in a way) this Alzheimer's has felt right.Delete
I had the pleasure of working at a Nursing Home recently during an internship, and worked with a lady I had never met in a facility I had never visited. I used the Verbal Ping Pong method of Penelope Garner at www.contenteddementiatrust.org over 3 visits of 1 hr duration over 2 weeks. 3 weeks after I had cause to re-visit the facility to see the Director of Nursing. The lady looked at me as she was walking past and pointed at me and said.. there he is.. and gave me a big hug.. on my last of the 3 visits, I had identified playing Cards as a calming and pleasing thing for her, and recommended that staff continue with that path. Why did she remember a stranger? She didn't.ReplyDelete
I believe she remembered the acceptance and love and security that she felt during our chats, and the emotions that went with that. Oliver James explains the Photo Albums in his book Contented Dementia based on Penelope's work, which suggests that Emotions are what is now stored in the memory most for persons living with Alzheimer's as a reference point for an event/image.
I'm certainly sold on the Contented Dementia methodology, after that experience, as a great add-on to the therapies that are already used in dealing with persons living with Alzheimer's and other Dementia's.
Maybe not at your stage just yet David, but worth researching to add to your Care Partners arsenal for when it might be useful.
Thanks for sharing your journey..
Certified Alzheimer's and Dementia Coach
through Remembering4You Training Institute
Peter. Thanks you very much. Someone just gave me a copy of Oliver James's book Contented Dementia, which I haven't but which looks interesting. Thanks for the reference.Delete
I'm not yet familiar with the different therapies for caregivers. Perhaps you could post a website or catalog that might be helpful to caregivers.
Good post, Peter. I have worked hospice and long term care for over 20 years. Some of those years in special care units behind a locked door. One woman I cared for about 5 years ago was placed in the care unit after she had declined. And she immediately knew who I was, and throughout the entire time I was there if I walked in, she immediately came over to me for a hug.ReplyDelete
When I had cared for her before, she had been a nervous person, but under control. She would come out of her room a few times, concerned if everything was allright. I'd give her a hug and send her back to her room with "everything here is fine. I've got it under control." And in relief she'd go back to her room to bed. After she came to the unit, she was a really nervous person. But I found that if I held her hand, she would sit there and sleep. She found some comfort in being around me, I guess because "I had it under control". LOL. When someone took her out of the unit for a walk, if she saw me, she would immediately come over to me, for help, I believe.
I think people recognize love and caring regardless of their cognitive difficulties. In nursing school, they don't really go into depth on different forms of dementia. Most of what nurses learn is when they are working.
this seems as good as any point to start. i attend a local alz group in denver. wonderful folks. we received a copy of 'perspectives' with your reprinted essay about the spectrum.i have been battling early onset for about five years now. four of those years were spent in battling the health care system for a diagnosis. i am both gay and poor. that proved to be quite an handicap, especially when republicans held the evil wand of power (things are looking much more hopeful in that regard!).Delete
anyway. for about 25 years i have been on a quest for spiritual proof studying mainly krishnamurti, buddhism's many streams, some christianity (elaine pagel's saint thomas school of doubting), and sufism plus a heavy dose of gurdjieff (where my first step on the path was planted). i have reached the point where the idea that i am spirit within a body speaks more to me than a body with a spirit and that i was asked to be here (with a responsibility to contribute). i found great inner peace with various forms of so-called meditation. krishnamurti's discourses on time, space, thought, language and 'being choicelessly aware' brought me to a place where my sense of self was challenged. collected knowledge and memory of one's experiences no longer served as the foundation of consciousness; there was something within me that had been present before this life and would be there after this one would finish. as the alzheimer's established its presence and knowledge and 'self' began to fade, i seemed to be become to be more aware of that other 'thingy'. i am currently enjoying the irony of losing the self that i had assumed was all and everything. there is something within me that is enduring (at this point in all of it)despite the lights going out. in fact i find the whole thing amazing! alzheimer's has become a great spyglass whose dark magic reveals as it destroys. as long as i can face it calmly, my spirit is enriched. what i do long for is some companionship among those of us fighting this fight but still walking through some astonishing landscapes. i do admire your ability to observe and be aware (for however long) of what is leaving you and what remains standing by. i seem to share that too but i find many do not "have" that (i took a poll among the dozen or so in support group and found but 2 others like me that knew there was some destruction going on before their boss/partner/doctor told them there was. in my group, we avoid any spiritual discussions. pretty much an upper middle class, conservative majority. they look at me funny when i am not in their christendom so i shut up on those topics. i am truly looking for a wider forum. if anyone out there cares to correspond or if i am welcome here (or near here), please jump in. especially in denver area. i digress. thank you dr. hilfiker for YOUR forum: validation, confirmation and light in the darkness.
I do hope that the self-awareness that we are trying to cultivate will help as the disease progresses. At this point, like you, I find it more fascinating than painful. My spirit, too, is enriched.Delete
What will happen as the lights go out, of course, is unknown. But it seems to me there should be some carry-over even when our cognitive powers have been decimated. I hope to remain aware enough as time goes on to find out.
a quick add. first off, thanks for publishing it. i feel i do not express myself well and these things are complicated on a good day. there is a wonderful program on pbs called "global spirit". watched it a half-dozen times now. it's very well done and very respectful to all points of view. my own "discoveries" are often validated on this show. it is quite comforting to me. i think others may find it so as well. i wish us all peace on this journey!Delete