The Yellow Wallpaper

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.

“Right now?”

“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.

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.

My first Aid & Attendance post received the following comment, which is definitely worth repeating here:

Hey Deb,

I read your post about trying to get VA benefits, and thought you might
like to know about www.GovBenefits.gov. It’s the official benefits Web
site of the US Government and provides information on more than 1,000
programs including scholarships. The site also features a free online
questionnaire to help determine eligibility. Interested readers can
also visit www.GovLoans.gov, the sister site of GovBenefits.gov, to find
information about Government loan programs, including veteran’s benefits
and educational reimbursement loans. I hope you find these sites
helpful to your readers.

Regards,

Awais Sheikh
GovBenefits.gov Team
US Department of Labor

Debbie Burak, the creator of VeteranAid.org, also left a comment for me that I’d like to repeat:

Deb,

If I might suggest to you, having walked in your shoes for not only my
mother but my father as well, which is why I created veteranaid.org,
contact Denver Combs at www.vetassist.org.

He is one of the most informed individuals about all veteran benefits
that you may not know about, and that your mother would be entitled to
now, as well as you since you are acting in the capicity of her
care-giver.

There may be some financial relief you can take advantage of to help
you now.

I hope this might help give some relief in dealing with some of the
stress for you.

Debbie Burak

Finding each of these in my mailbox was a very pleasant surprise–I hadn’t contacted either person. I’m impressed by their finding my blog and taking the time to offer further help.

As far as my application goes, I received the copy of my parents’ marriage certificate from the Vital Records Office of the City of Providence within a week of requesting it (despite–embarrassingly–my listing the wrong year of their marriage). I also received two copies of my father’s separation papers from the National Personnel Records Center, Military Personnel Records division in St. Louis, Missouri, just two days ago after requesting it electronically (I still had to sign a page and snail-mail it). Tonight I sat down with the application itself, just to pencil in what information I knew offhand.

The difficult part will be putting together a list of my mother’s income and assets. Not that her financial situation is extremely complex–but I have the impression that there’s more to this than meets the eye. Here is where I will return to VeteranAid.org and also contact Denver Combs at VetAssist.org.

I will also need a medical statement from my mother’s doctor. I had planned on making an appointment to talk with him about my mother’s health–now I’ll have a specific reason to do this.

I haven’t told my mother that I’m doing this, but I will eventually have to. Keeping this from her has seriously stressed me lately, along with making the “pre-arrangements” with an assisted living facility. Mailing the deposit that will put her on the waiting list was like trying to lift a 10-ton weight: I just couldn’t do it. Day after day I postponed filling out the short form and writing the check, and when I finally completed and put them in an envelope, I carried the envelope around in my bag until it weighed me down physically. I finally shut my eyes and dropped in into a mailbox.

I keep telling myself that this is all a precaution. I even told this to the woman I’m dealing with at the AL–I’m not ready yet, I’m just doing this to be on the safe side.

I have never said the “A”-word to my mother. I’ve never told her that she has Alzheimer’s, nor have I referred to it in passing. We have talked about her memory loss–I’m getting better at trying to draw HER out, rather than giving her little pep talks about it–but ever since the day the neurologist, Dr. B., calmly told my mother, sister and me that my mother had probable Alzheimer’s the word has not been spoken in front of her.

When I admitted this to one of my own doctors, his eyes widened. He was shocked. He calmed down a bit when he realized that I wasn’t actually pretending to my mother that nothing was wrong, but he wondered why I didn’t tell her the truth–”A”-word and all–didn’t I think she was entitled to that information?

I asked him how on earth I was to go about telling an 82-year-old widow that it was highly likely she had an irrevocably degenerative brain disease that had no cure? That its progress would be insidious and cruel–allowing her for the first few years to be aware of both the erosion of her past and the utter blankness of her future? Maybe she IS entitled to this knowledge, but what effect will it have on someone who has already struggled with depression and anxiety? At the risk of making a horrible pun–this was a no-brainer for me.

When we got home from Dr. B.’s office eighteen months ago, I, of course, was dizzy with shock. I immediately shifted into a mindset that was not strictly denial–I decided that I was going to take each month as it came with a dose of healthy skepticism. Whatever happened, happened, and I was not going to anticipate it. I now see that I was buffering myself. I remember my mother saying to me at one point that day that she thought she’d heard the doctor say the “A”-word (her term). I don’t remember what I said in response. I hadn’t exactly liked the neurologist–too smooth–and I may have said something to her about these feelings. But I think this was her way of signalling to me that this possibility was something she did not want to explore, and she has never mentioned the disease specifically to me again.

Her geriatrician has managed to navigate the shoals of obligation to his patient and deference to the wishes of her caregivers by not saying the “A”-word, while at the same time being straightforward with my mother about her losses. When she talks about her memory he tells her that she has lost parts of it permanently and must make the most of what she has now. He doesn’t say it that tersely, but that’s the thrust.

Oddly enough, I would now very much like to talk openly about it with her, but I feel that I need a signal from her, and the time for that is fading. In Shenk’s book, he describes two broad phases of AD: the being-aware and the not-being-aware. My mother is still aware that something is wrong, that mental matter is leaking out somewhere, but I’ve noticed lately that she has episodes of not-being-aware. When she looks for “Ma and Pa” and I tell her that she and I are the only ones in the house, she looks at me angrily, as if I’m trying to pull one over on her. “Are we going to play this game every night?” she snapped at me yesterday.

And then I think: Why do I now want to discuss it with her? Am I again trying to buffer myself, now that I can see the hard decisions on the horizon? Do I expect that she’ll then understand what I am going through and take the burden off my shoulders by making her wishes clear? Ironically, I sometimes think that if I’d been honest with her at the outset, she might have been able to tell me back then what she wished for herself, saving me at least some of the anguish I’m going through now. I honestly don’t know that I’ve saved her much anguish–whether or not the “A”-word is used, she has been witness to the growing blurriness of her mind, and there is nothing I can do about that.

In the end, she may have had a few months of ignorance, once the medications began to work and her mind briefly improved. I kept the “A”-spectre hidden during that time by not telling her. I’m not sure this was the ethically correct decision but I’m able to live with it.