Washington
DC
Sometimes, there are tiny views of what my future
holds. The view last week was more
disturbing to me than usual.
A friend who volunteers regularly at Joseph's
House had invited me to have breakfast there, help him clean up and talk a
little. To help with clean-up, I took my
place at the sink to wash dishes. The
drill is to wipe excess food off the plates, wash them in soapy water, stack
them near the sterilizer, put them into the sterilizer as each load is finished
and then put them away. Pretty straight
forward!
However, I found myself at each stage in the process
uncertain what to do. If the little
place designated for stacking the soapy dishes filled up, where else should I
stack them? If there was coffee in the
cup, did I need to wash it or was it enough to toss the coffee and put the cup directly
into the sterilizer? When it was time to
put the cups away, where were they stored?
(Answer: right in front of me).
How much dish soap should I pour into the basin?
These were minuscule decisions, and they didn’t
matter. If the spot for stacking the
dishes filled up, put the dishes anywhere.
If I don’t know whether to wash the coffee cups or not, go ahead and
wash them; it’s not a big deal. What did
it matter if I put in too much or too little soap?
I was in a mental fog, detached from the place and the
others in the kitchen. What was most
distressing was a sense of dependency on others; I felt I needed to ask someone
about almost everything, yet I felt weird about asking. I felt others' eyes on me (although I don’t
know if that was true or just a subjective sense.) My world contracted to the tiny space around
me.
I am ordinarily treated with deference at Joseph's
House. New volunteers, especially the year-long
interns, know of my role as founder and
have at least heard of my books if
they are not already reading them. The
deference has always been embarrassing so my response has been a bit
self-deprecating. The truth, however, is
that I also enjoy the deference and am willing to put up with my discomfort.
So were the volunteers noticing my confusion? As I worsen, will their opinion of and
respect for me change? (Of course it
will, especially as the volunteers change every year.) How will that feel to me? And what will it be
like to visit at Joseph's House as I lose that place of special respect? Will I even want to visit as I worsen? For the first time, I felt some of the
isolation that is probably coming … not because others isolate me but
because—in my embarrassment—I isolate myself.
I don't think you could lose their respect no matter what you did. You did some wonderful things, you helped a whole lot of people. The good that you did for others will always give you the respect you deserve. Even as new interns come there, you will always be the founder and have always helped the people needing your care. Its a shame that you had to retire early, but the good that you did will always be there. Look at the wonderful things you have done. Give yourself a pat on the back for your care and concern for others. There is no confusion or dementia that will ever lose that respect. Don't feel shame because you had difficulties. You didn't do anything wrong to get your diagnosis. Its not your fault. You didn't cause it and you can't cure it. Look back on the good that you have done in your life, the people that love you, the people you took care of. Its all there. And you cannot ever lose respect because of that.
ReplyDeleteIt seems very unlikely that a diagnosis of Alzheimer's or any other disability would cause lack of respect. Time takes care of that for everyone!
ReplyDeleteAlthough we each have a somewhat different journey, about 12 months after diagnosis, I started having similar "fogs." They come more often and last longer now but usually only I notice them. If someone does take note and they don't know my diagnosis, I just make a joke, like, "Not enough coffee this morning!" Yes, they are very disconcerting to the person. Strangely, I no longer get as upset and have learned to laugh AT myself. I also find that as time passes, the interludes are no longer as frustrating and sometimes I just sit and enjoy being "simple." I hope you can learn to cope.
The other comments are correct, I think. People won't lose respect for you (the AD sufferer), but I think they will lose interest. Or the connection they have to you will weaken, because for them life goes on as usual, and for you, each day is un-usual, each month passed is even more un-usual, a year is extreme in its un-usualness, and they don't know how to respond, or act. I see this with my spouse, for whom I'm sole caregiver (other than paid providers about 10 hours a week, so she doesn't have to spend entire workdays alone, since I'm employed full time). "Friends" are fair weather, and - in their defense they are all working professionals - with little time for r&r, few opt to spend what little they have with someone who is in a fog most of the time, who doesn't know where she's being taken when she leaves our home, who has no idea what day it is nor month, nor who governs the country, and so on. Don't want to seem pessimistic, just realistic. Get some new (paid) friends sooner rather than later. You can help them get to know you as you are now, to an extent as you were as long as you can inform them, and since they didn't know you pre-AD they won't have anything to contrast your present condition to. If they're good they will be compassionate but able to maintain a professional distance that no one else around you will be capable of.
ReplyDeleteOK, all three of you have convinced me. I won't lose respect. Here's part of my next post:
ReplyDelete"In my previous post I described my confusion washing dishes at Joseph's House. I wondered whether it would cause the interns 'opinion of and respect for me [to] change.' I got flak from a number of people thru comments and emails who thought it unlikely I would lose the interns’ respect as I worsened. I think they’re right. Actually, even as I wrote the post, I struggled to find appropriate word and used “respect” because I couldn’t find the right one.
"One correspondent suggested that what others might lose is 'interest.' That sounds right. As I worsen, it’s only natural that most people will lose interest. Strangers may still respect me but they will probably see little point in talking with me. I did exactly that to Robert Greenleaf, an author I greatly admired, when he visited us here in Washington. Once it became clear that his dementia would keep him from meaningful discussion, I saw no purpose remaining and left as soon as I inoffensively could.
"I can’t see any reasons it should be different for me."
I think I've accepted my diagnosis and, hopefully, learned to laugh at myself.
I can't foresee what will happen within my community, but I am currently doing my best to keep my AD in front of everyone in the hope that as the disease progress I can remain part of the community in whichever way works for all of us.
There is a saying that I like: " You can tell the character of a man by how he treats someone that can do him no good." The people that would lose interest, try to get away, not interested in talking to you because of your memory problems is someone without empathy, fearful of if its catching, or just doesn't know what to say. However, someone with empathy can talk to anybody about just about anything. If people are no longer fearful or lacking in empathy, they can always bring up some topic to talk about. When I was in nursing school, I had a 104 year old male resident who was sitting in a geri chair with a tray on it and he kept trying to make me understand what was going on (underneath the tray). We went over it and over it. My instructors were across the room rolling with laughter. He had an erection and didn't know how to explain it to me. And I had no clue what he was talking about. My instructors said my best trait was kindness. (I guess you'd have to have been there).
ReplyDeleteThere will always be kind people in the world. Just like we tell little kids, "there will always be people in the world that don't like you, for whatever reason." I can safely say that there will always be some people that don't want to interact with someone with short term memory loss. That can't be helped. So surround yourself with the nice people. If interns come into your group, find the nice ones. Don't worry about the others.
I know myself well enough to know that I would have great difficulty relating to a person with dementia. I would need to be very intentional about it. I'm fairly sure I would not take the time and energy to actually be so intentional. So, at least at this point, I don't find myself judgmental of people who will lose interest when the time comes but very grateful for those who have a gift of presence that can heal to so much healing.
DeleteIt's hard hearing about your ongoing experiences with Altzheimer's. I don't like knowing that the disease is advancing like it is. But I'm glad you are writing about it. Your fears and concerns are well founded, whether you call it loss of respect or loss of interest that people will have towards you, I know what you write is true. Human nature is what it is. People don't relate as much to those with less mental function, at least not generally.
ReplyDeleteHowever, those of us in your church community - - your family and friends - - we're very interested in reaching out and connecting with you as this journey continues. You have made a very strong impression on us, so I know we'll reach out beyond the scope of what would be typical in cases such as this. It won't be enough sometimes, you'll still experience loneliness and isolation I'm afraid. However, I hope we'll be able to ease the load some and accompany you better than what happens all too often for many with Altzheimers. Thanks for your commitment to raising our consciousness and compassion levels!
Thank you, Dawn. One of the great gifts I have been given and do not take for granted is this community of ours. Without you and the others, I would have less confidence entering this journey.
DeleteI read your posts in awe, as a woman getting a rare glimpse into her future. Like you, I wonder how long I will continue to be relevant, to be an active participant in life. Intellectually, you know what is happening to your mind. The reality is that there are times that you won't be able to use that information. I think it feels like being up to your neck in alligators, with no clue that your goal was to drain the swamp. Thank you for sharing your life.
ReplyDeleteOne of the great blessings of my faith community is that we have people of many different intellectual capacities. Each of us contributes something different to the up-building of community. Each of us is loved and respected for gifts that may not be intellectual but are nevertheless vital to our life together: compassion, ability to deepen community, emotional intelligence and insight, a radiant smile, and others I know but can't articulate. When I fear this coming loss of my intellect, I try to remember that I will still have something to offer to others that will be accepted by my family, friends, and community.
DeleteDavid, as a recent year-long volunteer at Joseph's House, this post in particular resonated with me. I can only speak to my experience of you and the time I spent with and around you last year. Yes, much deference is given to you from the Joseph's House community. Yes, we know it makes you uncomfortable. And, yes, we want you to also enjoy the honor we feel for you. I did not get the chance to know you before your Alzheimer's, but even with the disease I was always struck by how brilliant you are. It boggles my mind how high your intelligence is and I didn't even experience it at its prime! Even now, your mental capabilities are remarkable (and intimidating!).
ReplyDeleteMore importantly, though, your intelligence was outweighed by your work, passion, authenticity, and especially your compassion. I grew so much from being in your class at Joseph's House and I am humbled by the opportunity I had to join the legacy of service you began at Joseph's House. True respect is accompanied by gratitude, and that is what I will always carry for you, no matter how much you may change.
Thank you, Neshia. My time with you and other interns has usually been the richest, most gratifying hour-and-a-half on my week.
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