The Yellow Wallpaper

Today is mild and rainy. The ground is covered with bright yellow leaves and there are still many more to fall. Last year at this time my mother was in the hospital with a pulmonary embolism, and I was frantically trying to arrange for her to move from rehab right into Garden Manor. That didn’t work, and so she would come home for another month and a half before the move.

We are facing a very different holiday season this year. I’ve had it in the back of my mind to formalize Thanksgiving plans, but I don’t want to think about it. I imagine that my sister and I will have dinner at Garden Manor–taking my mother out anywhere would be too disorienting for her. Our usual places will be closed that day, and I can’t see us taking her to a more upscale restaurant for a big dinner. I’m sad and nervous about it–I knew that the holidays as I’ve always known them would be yet another collateral loss, but you just don’t know how it feels until you’re there.

I’m still not sure how “comfortable” my mother is in her new home. It’s very hard to tell, and I’m only still developing the skills needed to read the clues in her behavior. It seems odd to be saying that at this point, but it’s true. I realized this one day when I visited and she was just beside herself with anxiety and sadness. She told me over and over again that she would die if I made her stay there, that she had never been as depressed as she was now. But during this jeremiad, whenever one of the staff or another resident would pass by us, my mother’s expression would light up and she’d wave brightly at them. I discovered that I could change such a black mood by suggesting that we go shopping soon, and asking her was kinds of things she needed from the store. She rarely actually want to go to a store, but expressing her “needs” makes her feel better. She says that she wants nail polish and lipstick and “school supplies” but what she really wants is to be heard when she tries to articulate her feelings. She wants some control, some response.

So I’m learning to see my relationship with her in smaller increments. I just can’t think too far into the future–she lives so much in the present that I have to accommodate. I’m not going to throw out the past just yet, but I’ve got to put it aside for now.

I’m still surprised at how emotionally difficult it’s been for my sister and me to come to terms with my mother’s disease and the decisions it’s forced. I’m still having a significant problem with depression, but I’m improving. I’m in a graduate seminar that’s a challenge, and I can’t remember if I’ve mentioned that I have another pup. I saw him on Petfinder and after a bit of an odyssey, he’s in his new home. He was listed by a Massachusetts rescue organization, but he was in Arkansas! I hadn’t been too keen on relocating a puppy from that distance, but when I talked to the wonderful rescue lady in AK and heard about all the dogs she’s trying to place, I took him. I’d been looking at his picture for so long by then and imagining him in my home, that he was almost mine, anyway. So the “puppy bus”–which makes the trip from Little Rock up to New England every couple of weeks–brought him to me, and in surprisingly fine condition. Waldo was presented to me with his tail wagging and beautiful amber eyes sparkling.

We think he’s a Catahoula Leopard dog–which I’d never heard of before. If you follow the Wikipedia link and scroll down to the picture of the patchwork dog, you’re looking at Waldo’s twin. He’s about 7 months old now and into everything. He counter-surfs and has successfully gotten out of the backyard twice. He and my 10-month-old Jasper have great adventures together (and also some squabbles) and are in the process of renovating my kitchen.

On a final note, I finally got to see Bob Dylan. He played at URI about a month ago, along with Elvis Costello, and I went with a friend of mine. The show was great–Dylan was his usual inscrutable self and sang some classics in unexpectedly new arrangements. We’d be bopping along with the music for a minute or so before realizing that he was playing “All Along the Watchtower” or “Don’t Think Twice.” Unlike Costello, who was positively garrulous, Bob didn’t speak until the encore, when he introduced his band. The older I get, the more his music means to me.

A quick entry, just to say that I’ve posted at least once in August.

I continue to visit my mother three times each week.  Some days I find her settled, other days–like today–find her agitated.  She’s usually fretting about someone she cannot quite identify.  Today it was someone named “Lily” (the name of my recently-departed dog) who might be coming for supper, but my mother didn’t have any money and what should she do if Lily didn’t show up?

I can tell within seconds of arriving what her mood is.  On days like today she is enormously relieved to see me, as if I am bringing with me the answer to all her worries.  When she realizes that I am not, her expression tightens.  I try to change the subject, to reassure her that I will take care of things, but I can’t break the spell.  “Don’t you ever see them?” she asks.  “What happened to them?”

My doctor has increased my antidepressant and added something to help me sleep. I’m not crazy about taking sleep remedies but I am also not crazy about finding myself beyond exhaustion by the end of the week.  I thought I’d be on more of an even keel at this point but the waters are still choppy.  Maybe my expectations were too high.  Or maybe I’m catching up on the grief.

My mother has now been living at Garden Manor for six months, and here is where we stand:

• On the Aid & Attendance front, I reapplied in late February–four months ago–and have not yet received a decision. I had originally sent the application to the Providence, RI, office of the VA, but received an acknowledgement from the Philadelphia office shortly thereafter so I imagine that’s where the application is sitting. I send them a printout of the cancelled check for my mother’s assisted living rent each month, just to remind them of my situation.

My question for them at this point is: If you won’t allow folks to apply for the benefit before they commit themselves to a care situation–forcing them to OVER-commit themselves financially while crossing their fingers and hoping they’ll receive the monthly benefit–how do you expect the average middle-class potential beneficiary to manage? I DO appreciate that the benefit is awarded retroactively, but my fingernails are chewed to the quick at the possibility that they will pull some little-known subclause out of the darkness and refuse my mother benefits. And my mother is in a relatively good situation: she has a decent pension, she is in a reasonably priced assisted living home, and–maybe most importantly, not to blow my own horn–she has a family member (me) who is stubborn, tenacious and may also have an inflated opinion of her own ability to get things done on her own.

She also had a healthy savings account (now practically gone) and a life insurance policy that I cashed in. It’s true that my mother has a house, which is not included when her total assets are assessed by the VA. I am holding on to it for now for several reasons. The first is that I believe she is entitled to the A&A benefit and this extra monthly income will cover her AL rent without my having to liquidate her property. My father served this country for almost three years on a small boat in the Pacific during World War II, and he is a perfect example of the veteran this benefit was created for. When he returned, both parents worked from Day One for this house. If I sell the house now, my mother will no longer qualify for Aid & Attendance–this logic might seem disingenuous, but we are facing a very open-ended illness. My mother is in good physical health right now, but I have to consider the possibility that the Alzheimer’s will carry her along until she needs a nursing home–which we CANNOT afford. I spoke to a professional from the local Alzheimer’s Association who recommended that, if and when the time comes for a nursing home, my mother should at least start off as a “private pay” resident, if possible. That’s where the house will come in.

• I began seeing a therapist about a month ago, after the depression and anger began interfering too much with both my work and home life. I was sleeping and eating too much, dreading the weekends and feeling totally overwhelmed. I couldn’t understand WHY this was happening now that my mother was in assisted living and I was back in my house. I’d expected a letdown but not this. I like this woman very much–she’s professional and warm–and so we talk about what I think and what I feel, which don’t always jive. And I’m gradually feeling better. I’m recognizing that while a situation can be tackled intellectually, I can’t always set an emotional timetable for myself. Acceptance, grief and letting go can’t be pencilled into a calendar. It’s messy, especially for someone like myself who is most comfortable with a script. Things aren’t always what they seem.

• My mother seems to be “home” most of the time at Garden Manor. Yesterday when I was visiting, one of the aides brought her her pills.  “She is always smiling,” the aide said to me.  Of course there are wrinkles–I try to get to the bottom of my mother’s anxiety when I sense it.  “What are you worried about right now?” I asked her yesterday.  “I think you’re hiding something from me,” she said.  I am, I suppose.  She still asks regularly about “Ma”–where is she, where does she live?  I think her anxiety is related to “Ma” but I’m still feeling my way around here.  Redirect is still the best advice.

So this is the six month state of affairs.  It’s still caregiving, but it’s a different kind of caregiving, for me.

I didn’t want to let April go by without a word. I’ve started several posts over the past two months but have been unable to finish them. I knew that I would have a period of adjustment to my mother’s new living situation, and I guess I shouldn’t be surprised to find myself depressed. When I was living with my mother I would imagine this time–when I could finally return to my house and have some time to myself–as being light. In some ways it is. Having the time to be alone is a good thing for me. But beneath the moments of solitude and the freedom from worrying about her safety is a lot of grief, I now realize.

To be honest, I’m having a very difficult time right now. I’m having a hard time motivating myself to do a number of things–to keep up this blog, to read, to clean the house. I wake up each morning anticipating a long day. Once I get dressed and out of the house, my mood picks up, but I am still struggling to concentrate at work, to organize my thoughts and plans. Little annoyances become vastly important and weigh me down. I’ve been here before–I know what this is. It’s been awhile since I felt this “down” and so I have to remind myself that what I resist doing–writing and reading and meditating–are the very acts that will make me feel better.

What I want to do is watch TV, eat, and sleep. I do knit, which is about the only thing I do that’s productive and calming. Wait–I also garden. Weeding has always been therapeutic, and God knows, I have quite a bit of THAT to do. But fifteen minutes outside, inspecting my neglected garden for signs of life, is worth an hour of therapy. I’ve lost some of my favorite plants, but the clematis and the tulips and the peonies are back, and there’s nothing like seeing them poking out of the dirt to remind me that not all is lost.

I know that this mood will pass. I believe that depression is NOT something that must be avoided at all costs, that I can learn from being thrown off my stride. It doesn’t always feel good, but what does? Times like this remind me of the heart/mind dynamic–the borderline we learn to straddle as we get older. I go over my mother’s situation time and time again–my intellect has “gotten” it but my heart still needs the chant. Whenever I start to feel sad that my mother must be in assisted living, I have to remind myself that it isn’t the assisted living that is the problem. It’s the Alzheimer’s, and I can’t control that. The assisted living has at least given her companionship, routine, challenge. Were she back at her house, she’d be sitting like a ragdoll on the couch, unable even to watch TV. Now she takes walks around the building and sits with her group of ladies. She has her well-being monitored day and night. She goes to exercise, and to Mass, and to socials. She has her hair done. I now visit three times a week–on Sundays we go out to lunch and for a ride. I need to repeat all this to myself on a weekly basis, because it’s so easy to fall back into the habit of shaking my fist at the gods.

My mother has had her ups and downs but I can sense her settling in. On Thursday I sat with her and one of her friends, who began to talk once again about going “home.” “Which one?” my mother asked. The woman pointed to her room. Home is a concept I haven’t yet been able to pin down. More and more I see it as the hope that they will still have control over their lives–that they will continue to be able to make crucial choices for themselves. I have no right to take that hope away from them.

I’ve mentioned this before, but I’m struck by how my mother sometimes wants to go home “next week”, or some other time in the future. She admits she doesn’t want to live alone and asks me if I will find someone to stay with her. I have no intention of doing this–if anyone stays with her it will be me–and yet I hate to mislead her, so I’ve often wandered down the wrong path of trying to reason with her. She can sense my ambivalence, which agitates her even more.

What I’m coming to realize is that, like most subjects, this one is more metaphorical than not. We aren’t really talking about her moving home, but about her independence. I’ve read so much about the anguish of “lying” to a loved one with Alzheimer’s, as if we are still able to communicate as directly as we did before the disease. Communicating with my mother has passed beyond the unequivocal exchange of words. I have to look for patterns, for contexts, for tone. How else can I respond to her repeated questions about her mother–why isn’t “Ma” coming to see her, does “Ma” know where she is, did I have a fight with “Ma”? I now say “Everything is fine,” which may or may not be a lie. And when she asks me to look for someone to stay with her, I say “I’ll see what I can do,” which also may or may not be a lie. I think at this point it’s not the words that count, but the fact that she has someone to whom she can try to express what might be beyond words, over and over again. I can be there to absorb some of the anxiety, to reassure her, rather than trying to take a literal measure of reality. Like so much of life, this is not a situation that can be solved with one or two conversations, but will need to be repeated again and again, like a ritual.

I’ll end on a positive note. The photo at the beginning of this post is my newest love, Jasper, the 4-month old Sheltie who has entered Lily’s and my life. I’ve had him for about a month. We are going to “puppy kindergarten” (where the other puppies are twice his size–but he is twice as fast and not afraid of them in the least). We also visit my mother weekly, where Jasper is a great favorite with the staff and residents of Garden Manor. He loves my 14-year-old collie Lily–he snuggles with her all the time. I was a little in shock for the first week–I’d forgotten how peppy puppies are–but it took him no time to settle in. He’s affectionate and talkative and very busy. It’s nice to find myself at the beginning of something.