Alzheimer's Dementia is incredibly isolating. I'm sure it's because people don't know what to say, so they avoid discomfort by avoiding contact with us. His old friends have long since abandoned him, and it's impossible to make new ones now. No one should ever be shunned as undesirable, and it's particularly sad when that person was as outgoing, witty, talented and kind as Flip. He is not sowing what he reaped, at least in this lifetime. He was the most generous person I have ever known, yet I can't remember the last time anyone who was not born to me returned his smile. Apparently he has been deemed a person with nothing more to give.
Yesterday over lunch, I said, "You know I love you, don't you? I get impatient because taking care of you is hard, but I do love you." And for just a second, he was lucid and said clearly, "I know." Then he lapsed into gibberish, none of which was understandable at all.
I feel called upon to provide the loving mothering he never got from his own mother because he deserves as much, and more. But the burden is enormous. The expectation in our dealings with others is that they learn more every minute, which is the normal human condition. With this disease, the process is reversed so that its prisoner unlearns everything he ever knew, day by day, until presumably he is as blank as he came into the world. Watching Alzheimer's relentless march through Flip's brain is like taking an arrow between my own eyes over and over.
It would be nice to insert something positive here, but hopelessness characterizes this disease. If I could ask one thing of others, it would be to return a friendly gesture whenever possible instead of recoiling in suspicion because we never know the burdens others carry, and a smile really could make someone's day.
"A warm smile is the universal language of kindness.”
William Arthur Ward
33 comments:
I have heard this complaint from people with other disabling conditions - Down's, say, or CP. And ever since I have made a point of smiling and saying hello. It's a simple thing, but so easy to back away from what we don't understand.
And you are right, Alzheimer's is a story of hopelessness. I'm going to visit my father tomorrow, and I am braced for the change in him from my last visit.
I don't have a personal connection to the particular ailment but I can relate to unkindness in epidemic proportions. ::sigh::
A smile, a nod, a wave hello. What's the problem?
Aw, that breaks my heart. And I have learned something from it. Yesterday a very elderly gentleman sat next to me on the bus and said. "May I join you?" I thought, oh no... he's going to chat ... but I was polite. He asked me how my day was going, and then he chatted about some of the scenery we were passing, and I found myself being pleasant to him, and then actually warming up to him. When I finally got to my stop, he stood up to let me out of the seat, and he put his hand on my shoulder for a long time, and said, "I hope the rest of your day is very pleasant." But in his eyes I saw, "Thank you for being kind to an old man who just needed to chat with someone today..."
I'm so sad to hear about Flip's deterioration. I think possibly on some level he must be aware, and very frustrated.
You deserve a medal...! Or at least a few more feathers in your angel wings. :-)
I dont know what to say, really. "I'm sorry" seems so weak. I feel for you both especially Flip; i mean its nothing like what he and you are going through, but as a deaf person--the nature of deafness being what it is--I know what isolation is like. But as long as we have anchors--my sister is mine, as you seem to be for Flip--we hang on.
I wish I could give you both hugs.
ps my word verification is conan. I dont know why that is funny to me, but there ya go.
I have no words, it seems, because the only ones I have seem so inadequate. I can only listen and maybe learn something, and attempt to emulate your example.
I feel for Flip - and for you, too.
I wish I could give Flip a tight hug to say that the world still cares for him.
I feel so much respect for you, thanks for being such a wonderful woman. The partial visualization of all this feels painful.
I'm going to have to echo Bob. This struck a chord in me. I now feel better about my inexplicable kindness today-perhaps it meant more to them than I could have imagined. And maybe that's why this post hit me so hard.
we are all wandering in such fear....
strangers...people who don't look or sound like us...omgosh that person might be mentally ill and then what am I supposed to do?
amazing what a tiny bit of common courtesy and kindness can do. i wish Flip got more of it in the world these days. At least he gets it from you, my dear. But, I wish he could have more. I hope he is not as aware of it as I fear he might be. His frustration today indicates he is very aware of it. Poor guy.
When I was confined to a wheelchair for 3 mos., I became invisible, I tell you, INVISIBLE. People practically ran from me, but then that would mean they'd have to have seen me first. Lesson learned: I always make sure to look at people in chairs, in the face, say hi and smile and make normal, regular conversation. Easy Peasy. Let's all do it, eh?
Thank you for a candid and heartfelt post.
Your heart is huge and your words are the river that carries so much feeling and compassion. I followed you from my wife's place (TechnoBabe)
Fear--it is not what separates us from the divinity within but each other also. I feel sad for them who can not read intention and allow fear to rule a reaction. *sigh*
As long as you are there at the least Flip will have a friend Susan!
I've just been there. I lost my mother recently, and over the last year or so, Alzheimers, dementia, and hodgkins lymphoma have been taking her mind away bit by bit. Sometimes I've seen her, trapped in there, trying so hard to communicate, but unable to remember words.
She sang. All her life. But now music frustrated her. her hearing was failing, her sight...
And I knew she was afraid. Her friend, Margaret, next door, had gone, in the space of a year, from the always perfectly turned-out lady, stylish dresser, drove a little car, sang in a choir, in one year, to a vacant eyed creature, who'd wander out into the rain in her nightie, and have to be gently turned round, and taken home. Then to a care home, where she sits, staring at nothing. My mother would say "I'd rather die than go like Margaret did".
And so I'd see her, each time she realised she didn't know how to do some simple thing, looking more and more trapped and bereft, and knowing I couldn't save her, couldn't throw a rope, no rescue possible.
On her last day, she made jokes, remembered a story from when she was a child, and then, in the evening, cried out, and in a short while, was gone. I'm glad she never had to go into a home. With strangers.
Thanks for the reminder to us to be kind and to smile. I have usually tried most of my life to practice that especially to the elderly exactly because I believed that "there but for the grace of God go I." I have found it easier to do for strangers than my own loved ones. With strangers, it only requires my patience and compassion for the brief encounter but with the long and often burdensome exposure with loved ones, I have often snapped and became impatient under pressure. It's only human. We cannot be 100% perfect.
You have been a pillar of love and strength for Flip but you need to take care of your own health and your own need to recharge. I am so sorry for what you are both going through. May you find strength in your love for one another and the peace of God.
I saw a tv show last night on how people in other parts of the world see Americans. I was taken with the comment by one person that we seem afraid. I think we have become more and more afraid as the media pit us against one another. This is particularly cruel to those who are different, as is Flip and, I think, anyone with a disability. Our sense of community/humanity seems to be inversely proportional to the level of our fear. My apologies to you both...
Agent,
I'm sorry about your father. It is one abysmal disease.
I also smile at those who are most often ignored because they need kindness most.
OD,
The problem is usually irrational fear and self-absorption. We have lost much grace in our busy world.
Jo,
You are always kind. I'm sure your pleasant company immensely cheered that old man's day.
And yes, Flip is very aware, still. It would be easier if he were not.
Rachel/Conan,
Thank you for the virtual hugs, much welcomed! Deafness must be a special kind of isolation which is unimaginable to the hearing. But years of admiring you have taught me that it is possible to live a full life in every way if one has enough depth and spirit. (The fact that you are incredibly talented helps, too, of course.)
Bob,
Your kind wishes always help.
Abhinavbharat,
I realized long ago that I learn life's lessons best from pain. When everything is perfect, I just wallow in pleasure.
Thank you for the hug. I'm sure Flip felt it on some level.
Whitney,
I'm sure your act of kindness helped someone more than you know. Kindness is never wasted - at least, I'd like to believe that.
Tara,
I always make eye contact with people in wheel chairs, too, to reassure them that they are still visible, and viable.
Flip is still terribly aware of his difficulties. He can no longer dress himself or do so many things we've always taken for granted, and it angers him. I have always believed that we attract the teachings we need in each incarnation, but Flip has never needed lessons in humility.
James,
Of course I know who you are! It's always delightful to see you here as well as your lovely wife.
Mark,
Granted, Flip is not his old self any longer, but most of us are so heavily guarded that we cannot recognize a friendly gesture unless it comes through very specific channels. One of the reasons I prefer dogs to many of my own species.
Soubriquet,
I'm so sorry about your mother. It's a horrible way to go, and Flip is still in his 50's so it was also quite blind siding. Everything you describe is perfectly recognizable behavior, including my own pain that I cannot throw a rope to save him when his own body has turned against him.
At least your mother was not alone, even though that is slim comfort. I intend to avoid abandoning Flip to the care of strangers as long as I can manage by myself because it feels like betrayal, but it gets harder every day. I feel as if we are both on borrowed time now.
Calvin,
It is always easier with strangers, sadly, and often easier to love humanity than a specific human. Maybe it's a safety valve in our hearts to protect us from pain overload.
I can't imagine you as anything but kind, however. I find myself very close to snapping sometimes, and it makes me ashamed because it's not his fault. It's amazing how much knowledge and simple ability can be lost in a single day.
Elaine,
I think you're right about Americans being extremely fearful, and believe we never got back our confidence after 9/11. Plus the media is having a field day, magnifying everyone's fears and bruiting paranoia. Our sense of community shrinks daily as our hearts grow smaller.
Flip has deteriorated vastly since you saw him in November. It's shocking how fast this thing is moving. But you have nothing to apologize for - you have always been a wonderful friend.
You know I am hugging you right now and wishing I lived near you to give you a break and drop off a surprise to you occasionally. It hurts me that you are dealing with all this and giving so much love and energy while so much alone. What a world we live in. Our humanity lets us down over and over. Take care of yourself, my friend. Group hug to you and Flip from James and me.
It's sad that people are so scared and paranoid of others that they can't even return a smile or friendly greeting. It doesn't take much, after all. And as you say, it would make all the difference to Flip when he is so conscious of how his illness separates him from others.
There's an old guy at the care home across the road from me who I always exchange a friendly smile with when I see him walking unsteadily down the road. I'm sure it means a lot to him even if we seldom have a proper conversation.
Love to you, Susan, and to your Flip too.
i dont think a return smile can do us any harm... we should be more caring towards our fellow humans ...
Lisa,
Thank you! xoxo
Muhammad,
I think we gain more in the giving of a smile than we could ever lose.
Very poignant and moving, dear friend, and my heart goes out to you and Flip. He is terribly blessed to have a person like you in his life at a time of relentless trial. Please be good to you, too.
Susan, this piece is stunning in every way. Hope it's okay with you I posted a link to it on my blog. The best is: "it's sad when fear eliminates compassion." Indeed. If that shift could take place where we threw our fears to the wind and tenderly cared in that nanosecond when the flash of a smile could soothe, what freedom could prevail, for everyone. I asked a Buddhist monk once why fear was not listed as one of the main mental factors in Buddhist mind science. He replied: because if you check fear is the same as anger (which is listed). So in fact our refusal to reach out is not only that we are fearfully trying to protect our comfort zones, but that we are angry when reality pulls us out of them. Why we resent our own and others' vulnerability, instead of seeing the great gift it is for our own development and joy, is beyond me.
Oh honey, what a tragedy. Just so you know, i would smile at Flip on the street.
Ian,
I would, gladly, if I were better at multitasking.
Maria,
I have no doubt that anger masquerades as fear and vice versa. As pleasure-seeking organisms, we work very hard to spare ourselves pain or even discomfort. It does help (slightly) to think of our trials as opportunities for growth, but most of us are not quite evolved enough to be grateful for them.
Meno,
If you did, it would make his day because Flip appreciates beautiful women.
It's been a while since I've dropped in, so I decided to take a peek. When I was younger, I used to visit a man in my parish whose wife was going through Alzheimer's. There wasn't anything I could do for her, but I was able to talk to him, which helped, as he was also isolated, alone and was developing some health problems of his own.
I agree with everyone that Flip is lucky to have you. Do you have anybody there to help you out?
Bruce,
No, I don't. But it's partly my own fault as I have hesitated to ask anyone for help until now, when I really have to.
I'm happy to see you back.
I think if Flip could scratch and kick and claw his way to the top, if he could choose only two words to respond to your confession during that lunch, I think " I know" speaks volumes. He is there, he knows your pain, he feels your love and he understands. Flips understands.
And it is an electronic gesture — and something he cannot see — but you have your GUILTY WITH AN EXPLANATION blogosphere sending you and Flip smiles. Boundless amounts of them.
David,
Thank you for the virtual smiles. I can feel them and pass them on to Flip.
I do believe he knows on some level the pain his illness causes me, but we both focus mostly on him because he is losing himself, and nothing could be worse than that.
I wish we lived close enough to be of some help. All we can do from here is keep you and Flip in our thoughts.
Seventh,
Thank you, Jackie. I know you have a good heart but I think you mean "I," not "we" as Steve abandoned Flip years ago. Apparently the unbreakable bonds of friendship only applied when Steve needed a place to crash or something else from Flip. I'm sorry if this sounds bitter, but he could have used an old friend as this awful disease progressed.
Just now catching up here. So sorry to hear how fast this monster is stealing Flip away from you. I make a point of smiling at strangers, especially if they are the scaredy cat kind who think everyone they don't know must be a serial killer! Because, there's always a chance they look that way because no-one has been kind to them lately. I believe we're all fellow travelers along the same path and should try to ease the way for those who are suffering. Tomorrow there's a good chance it'll be us. Give Flip a hug and a squeeze for me...and a big smile.
Molly,
I think you always do the right thing without thinking about it. It's just the way you're made. Your smile is doubtless lighting up bleak days for many people.
Flip's disease is progressing at a shocking rate. He can't do many things for himself any longer, and doing them for him robs his dignity. I wish it were otherwise.
Two big hugs, one for you, one for Flip.......
Peace
Odat,
So happy to hear from you! We have to catch up again. (I thought of you when I posted the pic that accompanies this post because you love monkeys, as do I.)
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