The nurse from the assisted living facility visited us last Tuesday to evaluate my mother s suitability for this type of living. I fretted deeply about this, despite trying to calm myself down by re-examining all my escape hatches ( This doesn t mean she ll have to move TOMORROW , etc.).
I eventually realized that my primary worry was in presenting my mother with this evidence the presence of the nurse that I had been actively making plans behind her back, without her knowledge. This has bothered me A GREAT DEAL, despite my knowing that she is no longer able to consider the big picture, that much of the responsibility is now rightly mine.
I m also discovering a strange angle to my situation as my mother s caregiver: that it s easier for me to accept the disease than it is to accept the vagaries of the healthcare system.
And by healthcare system I mean not only the bean-counters and the policy analysts, but the vacuums that are created by allowing our practice to be shaped by the market, and not by ideology. I m certainly grieving for what my mother is losing, but maybe this is my Catholic upbringing I know that we all must die and I don t have any inclination to rage against the heavens about that. But I DO rage when I the lonely caregiver keep hearing about all the services that are out there for me, waiting to be tapped.
All I have to do is find and coordinate them!! In my spare time!
Sure, I m capable of looking at websites and in telephone books, and sending out email and dialing telephones. I can write checks and use a debit card, too! But it just isn t that easy, once you start discovering that you must either be very poor or very rich to take full advantage of this system.
Oh, maybe I m cranky because I ve only just come back from the pharmacy, unable for the second time to fill a prescription my mother needs because her nurse practitioner called it in and changed the dosage by 5 mgs., so my mother s Part D insurance company will not cover the new dosage unless the NP calls them directly. This is just a microcosm of what bureaucratic headaches are involved in dealing with the system and this is what I rage against, especially when I have to deal with it at the same time as I m filling out forms for the AL facility, and amassing a sheaf of documents for the VA.
Plus having to go into work late for the nth time because my mother wakes up especially agitated on a particular morning.
But back to the nurse and my disclosure-anxiety. I told my mother beforehand that a nurse would be coming to the house to talk to her about her health.
My mother was surprisingly sanguine about it. Okay, she said, and let it drop. I did not tell her where the nurse was coming from, until she was seated opposite my mother on the sofa.
The evaluation was very low-keyed and personal. At first I kept glancing nervously at the name-tag the RN was wearing, which bore the name of the facility. I expected her to administer the Mini-Mental Status Exam, or something like it, but she was most concerned with whether my mother is able to dress and toilet herself.
At one point she alluded to information she had learned from my mother s doctor, so I assume that he had covered the specifics of her illness with the nurse. I finally found the courage to tell my mother where the nurse was from, and how I had arranged to have her come and visit because I would like to move back to my house but do not want to leave my mother alone.
I had said this to her before, but not as pointedly and not with a witness present.
My mother looked a bit shocked despite her condition she now knew what this visitor meant. I noticed that she seemed to find it harder to look the RN in the eye after that as the nurse described the amenities of the place, my mother wore a flat, evasive expression. The moment the nurse left, my mother turned to me with an inscrutable look and merely said, You.
I felt terrible.
We didn t talk about it again that night. She was very quiet as we watched the news and then she decided to go to bed extra early, before the Mass began.
I felt at once awful and a bit relieved that she now knew what I had been doing. I held off mentioning it for several days (mostly because I ended up with my usual post-traumatic migraine a couple of days later, my routine roundtrip through purgatory after a stressful event). But on Sunday we took a drive out to apple country, where we bought a pumpkin and a bag of Cortlands.
On the way back I stopped at my house to water my plants, and my mother, as usual, remarked on what a pretty house it is.
I d really like to move back to it, I said.
Yes, but I don t want to leave you alone.
My mother was quiet a few moments and then said something sphinx-like: I don t have any aspersions about that place.
I asked her if she meant the AL facility and she said yes, and I was somewhat surprised that she had it so readily on her mind. I think I was relieved that she DID have it on her mind because at least now it s something she can be aware of, maybe even think about?
I m being optimistic here I ve been thinking about what she could have meant by aspersions : aversions ? aspirations ? I ve got to think about this.
It s a tough passage for me. I have to be careful that I don t focus too much on grappling with the system and lose sight of what I believe is best for my mother. One day at a time, as they say.
Only over the past couple of months have I understood what is meant by caregiver s burnout. Waking up each morning with a sick feeling in the pit of my stomach, going to bed at night with a head full of circling obligations and regrets. Catching myself in the middle of the rare pleasant experience and thinking, Whoa.
Not so fast don t get TOO relaxed Envying the person ahead of me in line at Target because I imagine that she lives the kind of trouble-free life I don t have. What s funny about the last statement is my knowing that no one actually has such a life a couple of months ago I was waiting in line at Dunkin Donuts and ahead of me was a man I d gone to grammar school with, many years before. I almost spoke to him but before I got up the nerve, he d gotten his coffee and was gone.
And then this past week I saw his mother s obituary in the local paper: she had had Alzheimer s Disease.
But part of the power of such intense, jagged, fear-ridden experiences as caring for someone with AD is the black-hole effect. Everything around you gets sucked in, everything else is somehow related to your troubles and assumes their nature.
Even the relatively minor headaches the car muffler coming loose or losing the brand new book of stamps you just bought become And now THIS!! moments.
Reverberations of the primary heartbreak as it pounds away at you.
Months ago I d bought tickets to see Bob Dylan perform locally. As the concert approached I became anxious I couldn t pull myself out of my tight little orbit.
First of all, I d have to arrange for someone to spend the evening with my mother otherwise, I d never be able to relax. And then I d have to take responsibility for my friends evening if I bailed out or had to leave early, I d be spoiling the experience for them, too. Then I realized that the worst-case scenario would be if I actually began to have a good time and then had to face the wake-up call of reality.
So I sold the tickets. As the Man himself says, You Ain t Goin Nowhere
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.
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?
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