Assisted living, pt. 2
September 13th, 2006
Next Tuesday a nurse from the assisted living home will evaluate my mother here at the house. I spoke to her on the phone today to set the time. She then asked me what my mother knows about the arrangements.
Nothing. We have brought it up as a possibility with her, but I have still not sat down with her to say, “Mom, we have you on the waiting list for assisted living.”
The nurse reacted very kindly to my prevarication. She suggested that we tell my mother that we are looking to find ways to improve her health and life. She was understanding enough not to say what she must have been thinking–”What on earth are you waiting for?”–and I appreciated that.
The truth is that this is by far and away the hardest thing I have done in my life. Dealing with my father’s death was not nearly as awful as this. I’ve heard heartrending stories about nursing homes and assisted living, and I’ve heard extremely heartening stories about them, and I am still in this harrowing place. I still want her to give me her blessing, to tell me it’s okay, that she would rather move than continue on this way. But she can’t, and maybe that’s because I’ve kept so much from her, and I’m not sure what I did was right.
I think the hardest part is keeping it from my mother. Watching her deal with each uneven day and knowing that she can’t make the decision. Trying to come up with some half-truth that might sugar-coat what I am going to do. I know that, to a certain degree, I am not totally responsible for the decision. There are realities that are finally becoming visible through my rose-colored glasses. My mother cannot live alone–no argument there–and should not be left alone at all. I realize this when I tell her, for example, to turn off the ceiling fan and then realize that she doesn’t know what I mean by “ceiling fan.” Or when she says things like, “I don’t know my face.” So sitting down with her to discuss assisted living might open a Pandora’s Box of mis-associations and fears.
But there’s still a Mom in there and if my father were around, he’d take care of her… Would he? How do you take care of someone when everything that is shared disappears? The past, the language, the habits, the trust? She can only hang on to the present, even if it seems miserable, because anything else is alien. What does “care” mean, under those conditions?
So I must decide for both her and me. And I want to be sure it isn’t my exhaustion making the decision. I guess I’m in the process of grieving, first, the loss of an expectation: that my mother, like everyone else, is entitled to determine the quality of her life–where she will live, what she will do. That grief engenders another grief–for the loss of my idea of my mother, of the person who is related to me in a way no one else will ever be. The first eyes I looked into, the first embrace I felt. I still see glimpses of her and this is the person I feel I am betraying, mostly by my silence.
I know she needs more care than I can give her, and this need will only increase with time. I know that better with each week. But the intellectual realization and the emotional realization are not aligned, and that’s where the mourning is.
From Emerson’s essay titled “Fate”:
Let us build altars to the Beautiful Necessity, which secures that all is made of one piece; that plaintiff and defendant, friend and enemy, animal and planet, food and eater, are of one kind. In astronomy, is vast space, but no foreign system; in geology, vast time, but the same laws as to-day. Why should we be afraid of Nature, which is no other than “philosophy and theology embodied”? Why should we fear to be crushed by savage elements, we who are made up of the same elements? Let us build to the Beautiful Necessity, which makes man brave in believing that he cannot shun a danger that is appointed, nor incur one that is not; to the Necessity which rudely or softly educates him to the perception that there are no contingencies; that Law rules throughout existence, a Law which is not intelligent but intelligence, — not personal nor impersonal, — it disdains words and passes understanding; it dissolves persons; it vivifies nature; yet solicits the pure in heart to draw on all its omnipotence.
September 14th, 2006 at 9:28 am
Deb - This is such a moving post, and one I identify with so completely. Like you, my sister and I are tiptoeing around the inevitability of AL for my mom, still clinging to an “idea” of her as someone who made decisions for herself - and later for my dad, when he couldn’t. But she is no longer that person, and the grief of that kind of loss - in which the person is still physically present, but mentally absent - is very specific and overwhelming. I’m thinking about you and your family, and wishing you peace.
September 15th, 2006 at 2:00 am
Aside from, as Paula said, being an extraordinarily thoughtful and moving post (I’ve been so haunted by it that this is the second time, maybe the third, I’m not sure, that I’ve come back to read it), it reminds me of something I ran across last week on a very strange website to which I was directed by a piece of New Age junk mail that serendipitously settled into our mail box. The site it mentioned belonged to a woman in Dewey, AZ, who advertises that she had a critical life moment with a dolphin (I know, I know, hang in there). Anyway, the site was short and easy so I decided to look around. Somewhere, there was, a quote, although the source wasn’t cited (perhaps it was a dolphin?!?), that intrigued me: It said that one of the three blocks to enlightenment (a type of Buddhist enlightenment, I assume, since quite of bit of the stuff on the site was vaguely Buddhist) was “integrity”. This startled me. I am fanatical about integrity, as you probably know, and I was caught with my pants down, so to speak. I’ve been thinking about this ever since. I’m not sure whether I agree or disagree, but I have to say, this odd little suggestion has certainly caused me to examine integrity in many different lights.
This post of yours reminds me of my examination; not just the Waldo quote, although it’s excellent, but our questions and considerations. It would seem, of course, that the stripping of integrity which Alzheimer’s, and other types of deep dementia, performs is a horrible thing, and, certainly, in many stages, it does not appear to be a particularly enlightening experience; it’s rather like watching someone trudge through the levels of hell. But, all this reminds me of another quote, from the movie “Jacob’s Ladder”, by another famous thinker, although I can’t remember his name at the moment and am too tired to pull out the movie and find it (I will, later) to the effect that demons are the angels we’re ignoring, who become demons so we won’t ignore them.
What a harrowingly provocative post. I will think about it, and related issues, and probably come back to it, for a long time to come.
September 16th, 2006 at 2:33 pm
You know, after eleven years of taking care of my father, you’d think I could get through a post on this subject without crying like a baby, but your single sentence…
“The first eyes I looked into, the first embrace I felt. I still see glimpses of her and this is the person I feel I am betraying, mostly by my silence.”
…made me weep. Not from sadness, can one run out of sad tears?, but of recognition. It is that silence you mention that is the real evil of Alzheimer’s disease. The lines of communication are severed and all there is to go on, at least for me, was what I had been taught. It was as if my father said, I am yours, now, what daughter do you wish to be?
I became a person I never knew I had the strength or character to become. He taught me more in the years of this disease than he did while he was healthy, hearty, and hale. I AM the daughter of whom he would be proud, of whom I am proud. I fought, I advocated and I demanded that he be treated with honor and respect, no matter what.
All of it is ugly. All of it is hard. And we either have to keep talking about it, sharing the experiences or that “silence” you mention will eat us alive. We will all make different choices for our parents, but one choice we must REFUSE to make is to give up. Please, please, please, listen to your heart. Listen to your heart. All we can be are the sons and daughters our mothers and fathers raised. The question is, who are we? What kind of daughter AM I? What kind of son AM I? A lot of denial surrounds this disease, I think, because it so clearly shows us who we truly are. These are our parents. Our mothers. Our fathers. Who are we?
Hang in there. And thank you for the beautiful, heartbreaking post.
Patty
September 16th, 2006 at 2:42 pm
You know what, my dad always told me that he would take care of my mom and that they would never end up in a home, but here we are: My mom has been in an assisted living facility since May. The thing is that it is generally too much for one person to take care of someone with Alzheimer’s. After a certain stage, it is almost impossible to keep the person in the home. My grandmother had full time help, but it still wasn’t enough and now she’s in a nursing home.
That you’re moving your mother says NOTHING negative about you as a daughter. You are doing teh best that you can. And you moving her doesn’t have to mean that you’re giving up your role as caregiver. We go visit Mom EVERY day. And there’s still a lot of caretaking that you’ll keep - responsibility for finances, medical care, making sure that things are going on at the facility as they’re supposed to. Try and think of this as an opportunity to be able to move from thinking about struggling to keep her basic needs met to having the luxory of thinking about making her life a little brighter (presents, fieldtrips, special things you can do together). Hang in there.
September 16th, 2006 at 10:52 pm
Thank you for sharing your heart with us. This is the first time I have visited the Yellow Wallpaper, coming to it through Michael’s Smoke and Mirrors.
My heart goes out to you. My brothers and I spent all Memorial Weekend, checking out Assisted Living facilities for my Dad, who was stricken with Alzheimer’s Disease. My parents had moved last fall from their home to Independent Senior Living after Mom had fallen and broken her hip. It was getting extremely hard for Mom to manage Dad–she was so exhausted, but trying to hide it from us. We took all the tours, given by cheerful reps. trying to market all their facility’s amenities. At one point, my brother just broke down sobbing. I grabbed him and we just cried and hugged, sharing such a personal, gut-wrenching moment in front of this complete stranger. Dad joined the angels suddenly on the 4th of July, sparing us the decision of where to go and what to do. Mom is able to continue living on her own, now that she doesn’t have the responsibility of Dad. But who knows what the future holds for her? Maybe we will someday be back to trying to figure out our next move. I will never forget that day and all the feelings and anxiety leading up to it. I will be thinking of you next Tuesday and praying that all goes well and that somehow you soon have a sense of peace with your decision. Thanks again for sharing–I feel we all do a better job at this when we feel we’re not it in alone. Good luck and God bless you. Laurie
September 19th, 2006 at 11:04 am
I understand your sense of grief. I am in a somewhat similar situation with my mom.. only not to the depth that you are living with. My Mom is in an assisted living facility. She requires care because of physical problems. She is forgetful.. but mentally she remains competent. The decision to move her to her present home was both hers and ours. We were able to discuss it so I did not have the burden of making the decision completely with out her input. For that I am very grateful. But I too am missing my mom.. the person I used to run to about any new problem or happening in my life. The person who I depended on so much for advise. Our roles have now reversed and I am the one she speaks to to make any decision.. and that is ok.. but I still miss my mom .. the one I remember.
Assisted living can be very good. I believe that once the decision is made to have our parents in such facilities then our role is to make sure that our parents get the care and home atmosphere they deserve. I find that I am still extremely active in my mom’s care. Only now I am also able to enjoy some “my time”. I am hoping that if/when you find a suitable home for your mom you are able to find the peace in the decision. It does not have to be a negative thing.
November 12th, 2006 at 8:16 pm
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