The Yellow Wallpaper

My mother seems to have moved into a twilight place.  She is eating less and less, and sleeping almost all day.  The staff at Garden Manor are wonderful, as is Hospice.  She is always dressed (which must be an ordeal, since she can’t even stand up on her own) and someone has painted her nails and curled her hair.   She is usually sitting in one of the recliners in the common area, which makes me feel better.  I had once fantasized that I would take her home when this time came, but I would not be able to take care of her the way they do.

I feel like I’m dreaming.  It’s such a cliché, but that’s the way it feels.  I have spells when I question our decision to call Hospice.  But I’ve come to the conclusion that NOT calling Hospice is a decision, too.  My mother left an advance directive, which has helped us to plan her care, but you don’t realize all the “small” decisions that comprise carrying it out.  Do we continue the Namenda?  Do we stop the Coumadin?  What medications and measures are of a mindset that hopes for some improvement, or, at the very least, a warding off of the worst?  And does this mean that we are hurrying her along?

I suspect that some people look at me strangely when I tell them that I am NOT going to let her go to the hospital again.  As if to ask: “Who are YOU to make that decision?”

Well, I’m sure that my mother would prefer that I and my sister make such a decision, rather than anyone else.

In the meantime, my house is filthy and I’m missing a lot of workdays.  Mornings, in particular, are tough.  I wake up in the dark—before the doggies are awake—and I wonder how I’ll get through the day.   I remember, many years ago, an older friend telling me that it doesn’t matter how old you are when your mother dies—you still feel like a lost child.  I felt like this when I was in the first grade, and I didn’t want to go to school—my stomach churned and I thought I was going to cry.   I don’t like the feeling, but it reminds me of how deep and physical the bond is—which is strangely comforting.

I am slowly allowing myself to realize that this will be my mother’s last infirmity.  I kept playing devil’s advocate with myself as she’s failed over the past couple of weeks–how on earth could she fail so quickly?–but this is one of the ways it happens.  It boils down, I think, to an injury of her spirit.  Something within her is saying, “It’s time to go.”

As if on cue, a bed opened up in the skilled nursing unit at Garden Manor, and she’ll be moving back there soon.  Her doctor mentioned something about a feeding tube and I said NO NO NO.  She’s 86 years old (yesterday was her birthday) and the past few years have been difficult for her.  I will have Hospice attend to her.  Right now she is halfway there, I think–she sleeps a lot and mumbles about her teaching days. She doesn’t seem to be in any great pain or distress (unless someone lifts her the wrong way).  I don’t want any more CT scans or x-rays or stretchers.  She will go gently.

On March 18 my mother fell at her assisted living and was taken to a local hospital. I had just gotten into work when I got the call–I met her at the ER and so began the long wait. She had a UTI and was dehydrated, but x-rays and CT scans revealed nothing broken. But she was clearly in severe pain that ran down her left leg–whenever someone tried to elevate her upper body she nearly screamed.

The doctor admitted her for observation and I was initially pleased with the situation. On the geriatric wing is a large room beside the nurses’ station, with a window between the two and a CNA on duty in the room. My mother was put in this room, which was a relief. Although she was surprisingly calm during the 6-hour emergency room wait, I knew it was only a matter of time before she became agitated. My sister and I stayed with her until she fell asleep.

The first phone call I received the following morning was from the discharge nurse. The hospital was already trying to send her home–despite her obvious pain, and despite the fact that her assisted living facility would not take her back in that condition. And because she had not been officially admitted to the hospital, Medicare would not cover rehab. I explained this to the nurse, who suggested that I private pay for rehab. I don’t remember what I said to that, but she was stuck on the idea of discharge.

And so my sister and I decided that the best course was to plant ourselves by my mother’s bed and ask to see the attending physician. When she arrived we made it clear that we weren’t going anywhere until something had been diagnosed, and so she ordered an MRI and the hospital officially admitted my mother.

The MRI revealed an acute fracture of the T12 vertebra. By this time, my mother had been flat on her back for three days, which worried me. A Khyphoplasty (”glue” is injected into the fractured bone to stabilize it) was scheduled for the next day, but could not be done because my mother’s Coumadin level needed to come down. By this time it was Friday, and we ended up having to wait until Monday for the procedure, which went well.

The following day the hospital got its wish and discharged my mother to its affiliated skilled nursing unit for rehab. She was very confused and tired–the result of all the environmental changes and pain medicine, along with the UTI. We were happy to see my mother dressed in something other than a johnny when we went to see her the next day, but all she wanted to do was sleep. She was alert on the following day but not too articulate, which was understandable.

My sister got a call the day after that: my mother was being taken to the hospital with a fever and elevated heart rate. Off to the emergency room again, but this time we made sure she was taken to the hospital where her doctor has privileges. After x-rays and urine and blood samples, the ER doctor told us she had pneumonia.

I’d never seen my mother as agitated as she was that afternoon. She was completely incoherent at times, and then would revert to a calmer state. At one point she wondered if my sister weren’t too warm with the sweater she was wearing; a few minutes later she was grabbing at her johnny and catheter, and trying to tell us something–but we couldn’t figure out what.

So today, Sunday, is her second day in the hospital. I came home from the ER on Friday prepared for the worst. I know that aspiration pneumonia is frequently the last straw for Alzheimer’s sufferers. When we visited her on Saturday we found her sitting up–a good sign–but again trying to get her johnny off. She was very distant and uncommunicative, but her skin was cool and fresh-looking. She sat up for several hours (dozing most of the time) and we left when the nurses put her back to bed. They told us she’d eaten a good breakfast but not too much for lunch.

So I don’t know what will happen. I’m on my way to the hospital now. If she pulls through, I’m not sure she’ll be able to return to Garden Manor. What I’m thankful for is that her doctor will be able to see her tomorrow (he was not on the staff at the last hospital)–I trust him completely.

Time to go.

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.

I finally got the thick envelope from the Veterans Administration, and I felt like a high school senior, trying to guess the contents before opening it.

The VA awarded my mother the full Aid & Attendance benefit, retroactive to the end of Dec. 2006.  Whew.  BUT because she has Alzheimer’s, they will designate her as “incompetent”, which means they will appoint a fiduciary–another delay before we get any money.

They refused to consider my legal power of attorney when I first applied for the benefits, so I had my mother sign the application, even though she understood only broadly what she was signing.  My only alternative was to go to court and get guardianship of her, which would have taken too much time.  I understand from reading VeteranAid.org (I could NOT have applied without the help of this website and its creator, Debbie Burack) that the VA now has a form that assigns representative power to someone other than the applicant at the outset of the application.  My recommendation is to complete that form, even if the applicant is still aware of what’s going on.  I don’t know if it will prevent a delay like mine, but it’s easy enough to do.

Anyway, I will send the VA another letter, along with another copy of my power of attorney, and request that I be appointed my mother’s fiduciary.  I’m feeling like this is a time-consuming pantomime–do they really believe that someone with dementia could complete that application, just because they signed it?  At least I know that the money is coming at some point, which is an ENORMOUS relief.

My mother is doing as well as I can expect at Garden Manor.  I really have no complaints about her care–they have a wonderful staff and the place is clean and cheerful.  There is a regular round of activities–exercise, rides, cookouts, parties, music and get-togethers.   There is a monthly group for family members, run by the staff social-worker.

For me, the caregiver, it’s a challenge to straddle that line between accepting the inevitabilities of the disease and trying to keep some kind of meaning in my mother’s life.  I remember thinking–only a year ago–that once she could settle into assisted living we’d be able to coast for awhile, that there would be a holding pattern, just so I could catch my breath.  There is, and there isn’t.  Now that I don’t have to worry as much about her safety and physical care, I can notice more of the disease itself.  The gradual fading away of affect, the effort required just to negotiate her world, where she is continually puzzled by her mother’s absence, where she is still responsible for “the kids”.  Conversations, such as they are, are a great effort on both of our parts.  She is usually just THERE, while I try to tease information out of her.  She can’t remember whether she ate lunch, but can recall where each of her siblings went to high school.

So it’s a hard experience all around.  She’s slowly disappearing.

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.

I noted to myself yet again the other day how much I enjoy talking to the other residents in my mother’s wing. I’ve mentioned this before and I don’t mean it to sound crass, but I never expected this. What did I expect?

Thinking about it now, I wonder if I just didn’t expect the social life that persists in spite of the fractured cognition. I can tell that not all of my mother’s neighbors have Alzheimer’s Disease–some may have vascular dementia or Parkinson’s–but all seem to have some shortcomings in terms of reasoning or emotional control, if not spatial and temporal confusion. A couple of them rarely speak. There is much repetition and short-term memory loss, and something akin to what we called “suspension of disbelief” back in my college literature classes. This occurs when we accept a different set of rules in certain situations, such as watching a movie or attending a play. We expect that there is a method to the temporal and spatial shortcuts, for example, and accept them on good faith.

Maybe that’s what dementia is, essentially–a suspension of disbelief. I don’t want to torture this metaphor but I can imagine that the outside world becomes increasingly like a weird movie to someone who is losing their ability to reason. I wonder if their delusions are efforts to organize things from the inside out. My mother believes that she is once again a schoolteacher and the people around her are her “kids”–although I don’t think her delusion is altogether neat and stable. I think it becomes “stronger” the more vulnerable she feels.

I’ve been realizing that, as far as visiting goes, longer is not necessarily better. A short visit or outing is best, and if I overstay or if I keep her out too long, she starts to worry about what the “kids” are doing without her around. Today we took a slightly longer drive than usual, and when we returned I noticed that my mother looked tired. “Are you going to take a nap?” I asked, and she sighed. “I’ve got to check on the kids,” she said.

Liz and I are getting better at responding. “It’s Sunday,” we’ll say, “so most of the kids are off today. You’ll be able to take a nap if you want to.”

“That’s right,” she finally says. “I think I will take a nap.”

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’ve been mulling over the very insightful comments left by Marty and Gail on my last post. I think Gail summed it up well when she stated that “it’s the tension between ‘doing’ versus ‘being’.” I’ve always been someone who feels that the “being” will come later on–there is just so much that needs to be done right now and therefore no time to just “be.” What Gail says about the demented and routine boils down to living a life that is increasingly and necessarily “in the moment.” I was rereading Joanne Coste’s Learning to Speak Alzheimer’s and found myself interested in her remarks about the loss of depth perception in Alzheimer’s sufferers. There’s a psychological analogy to this loss as I see my mother losing context–forgetting the stories that surround everything. And yet she still knows that there should be a story, so she pulls out whatever’s left and patches something together.

I’ve been taking her out for ice cream after dinner once a week, now that the weather is nice. Literally around the corner from Garden Manor is a place that makes its own ice cream in flavors you can’t get anywhere else: lemon coconut, chocolate raspberry. The area around the ice cream shop is still very woodsy (although development is slowly approaching) and across the street is a big lake. We get our cones and I park the car facing the water. We don’t say too much–we watch the boats and the anglers. I’m regaining an appreciation of simply looking at water. Possibly because I’ve had so many wonderful experiences around water–many of them with my parents–just the sight of it is calming.

When I was a kid we used to go the the beach in the evening, when my father came home from work. My mother would bake chicken in some kind of cinnamon coating, and we’d pack it up, pick up my grandfather, and drive to either Newport or Point Judith. Once we spread our blanket out on the sand and got settled, my grandfather would smoke a cigar without saying much; my father would read. My mother, sister and I would walk to the tideline and look for shells while the water washed around our legs. That evening light and the salty smell can lower my blood pressure to this day. The sounds of the buoys and the seagulls, the great big rhythm of the tide–when my mother and I now sit and look out at the lake I begin to feel a bit of that peace. I wonder if the sight of the lake can still suggest to her the peaceful feelings of those days, even though the stories might be lost?

Yesterday I took Jasper with me, which reduces the peace factor but my mother enjoys him so much. I found her in her room, in the middle of something that had to do with taking a break from “the people in the auditorium.” I suggested we go for ice cream and she immediately agreed, but needed to let them know she was going. The “people,” it turned out, were a new resident–a sweet, childlike woman named Betty. My mother found her in the common room and talked with her a few moments. “You go and have a good time,” I heard Betty say as I approached them. “This is my sister,” my mother introduced me, but Betty had her eye on Jasper. “A little dog!” she exclaimed and bent over to pat him.

Jasper shines at moments like this. He lifts his little head and lets himself be petted, then gives his admirer a kiss. His behavior there continues to amaze me because he can be a demon puppy at home–he’s chewed the kitchen linoleum, several shoes and his very nice dog bed. When I lean over and sternly say “NO” he looks at me for a moment with those adorable eyes, then barks sharply as if to say “Make me stop,” and runs off to find something else to get into. He “graduated” from Puppy Kindergarten last week, which involved the awarding of a diploma. I accepted it for him, and–the pressure finally off–he squatted and did his business in the middle of the training room.

So we finally dragged Jasper away from his fans and found ourselves enjoying our ice cream and watching the water splash as the small boats passed by us. My mother was quiet for awhile, but finally said, “I’d love to be on a boat.” I tried to remember the last time we’d taken a boat ride together–maybe years and years ago across Lake George in upstate New York?–and remembered that one of the activities planned for the residents at Garden Manor was a boat ride. I wondered if she would go on that trip, or if she would prefer to be on a boat with me. I made a mental note to check on possible boat rides across the lake.

When we returned to the Manor at about 7:30, most of her fellow residents were in their pajamas, including Betty. My mother would not settle in her room until she tracked Betty down. I spotted the two of them saying good-night to each other in the hallway and giving each other a kiss on the cheek, which made my leaving a little easier.

My mother is much quieter when I visit now. Today being Sunday, we took off for our usual lunch and drive. My sister comes along, as does Jasper the Sheltie (who really doesn’t like going for a ride, surprisingly–he runs and hides when I approach with his harness. This is pretty uncharacteristic for a dog and I’m hoping he grows out of it). Garden Manor has a Sunday afternoon barbeque, and today my mother seemed uncertain about whether she wanted to stay for that. Making even a simple decision is almost impossible for her at this point. A choice between coffee and hot chocolate, for example, is prolonged by her insistance that someone else pick for her. It’s a frustrating development at a time when I want to preserve what little choice she has in her life. At first I would not let her off the hook, but now I’ll just pick what I think she’d prefer. So today I suggested we forego the barbeque and go for a drive.

And this we did. She says next to nothing as we drive, which bothered me at first. I’d question her about her sleep, her meals, her activities, and she’d always answer me with vagueness–”I guess so,” or “I forget.” So I’ve backed off a bit. Every so often I’ll ask her if she’s comfortable or does she want to stop at a store, just to tune her in. I’m getting better at translating her silences–sometimes she’s just pleased to be out and othertimes, like today, she’s unsettled.

Lately she’s seemed like someone walking around with a pebble in her shoe. Always a little “off” but unable to pinpoint why. Constant, low-level discomfort. I don’t know how much this discomfort is turned up when my sister and I are around. I’ve asked the staff how she’s doing and they tell me she’s doing fine. And when I’ve arrived to find her sitting with her card-playing friends, she seems in good spirits and very engaged. She tells us that she does nothing all day, but I know otherwise. The staff photograph many of the social functions and then put the pictures on bulletins boards around the lobby. I originally thought that was a sweet little extra, but now I see that it is probably for the families who can’t get anything out of their loved one. I’ve spotted my mother in a few pictures–eating ice cream or listening to music–so I know that she joins in occasionally.

So I’m thinking that her taciturnity (is there such a word?) might be a little more complex than merely the verbal loss that accompanies Alzheimer’s. She’s been at Garden Manor for a little over five months now, and she seems to be making her own sense of it. On the other hand, I have my own sense of where she “is” and the two don’t often mesh, I think. I operate under the assumption that she remembers how she came to be here and my role in that change. I visit the woman who–I believe–thinks about her old life and wonders why I don’t show up more often. But she’s not that woman, and so I think my assumptions puzzle her.

I’m not saying that I need to map her reality, because I don’t think I can do that. But maybe I can back off and stop trying to fix what isn’t broken.

For example: one subject she invariably raises when I visit is her mother. “How’s Ma?” she asks me. “Where does she live?” “Did you have a fight with her?” “Does she know where I am?” I usually improvise in a very sloppy way, but I think that this is a theme I might have to consider more carefully. Or maybe it’s part of this stage of her adjustment to her new life.

On a personal note, I finally let go of my beautiful 14-year-old collie Lily yesterday. I was hanging on to her, despite her crippling arthritis and doggie dementia. But my poor girl developed a horrible pressure sore, and I knew I couldn’t put her through any more. She’d had a good, long life–and a healthy one, until recently–and her welfare was more important than my need to hang on to the past. I’m less distraught than I was when my boy Dustin died last August. His illness and death were unexpected, but I’ve been considering my Lily’s life for months now. She was a lively and inquisitive collie, so seeing her deteriorate was awful. I think my sadness now is alleviated by relief at being able to release her from her difficulties.

But, oh man, I’m starting to get severe “decision fatigue”…