The Yellow Wallpaper

I’ll be keeping this blog up indefinitely in the hopes that it may help someone who is caring for a loved one with Alzheimer’s disease, but this will probably be my last post.  (Never say never.)  I’ll check it periodically and maybe update the links, but I’m moving to another blog: Songs from a Spiral Tree

I’ve begun the new blog as a writing challenge to myself–I won’t be posting daily but will gather my thoughts on certain topics and compose short essays about them.  I’ve lost count of the many blogs I’ve turned to at least once for counsel and answers and entertainment, and I’m hoping I can contribute to the meta-conversation.

My gratitude goes to all who have taken the time to read and comment on this blog. I have made some wonderful friends who have helped me in ways I can’t begin to describe.

Today bears the same date as the day my mother died, but that day will always be a Tuesday to me.  It felt like a Tuesday.  Or maybe Tuesdays will always feel like that day, which was sunny in that extra bright early spring way.  No leaves on the trees yet, exposing the squirrels and birds as they reorganized.  Daffodils all over the place but not yet the lush green of deep spring.

I’m still surprised at times to realize that she’s gone.  Seeing her name on the grave marker was probably as close as I’ve come to fully realizing her death. I think I’ve used the phrase “suspension of disbelief” before–Coleridge coined the phrase to refer to a reader’s response to the fantastic in an otherwise credible story.  If a story resonates with the reader she is likely to accept such elements as the supernatural or chronological discrepancies.  Something like that is going on with me, I think.  Placing flowers on her grave is one way of suspending disbelief.  Giving away her clothing is another.  Despite it all there is something still alive.

So I find myself feeling like a tightrope walker without a net, now that both parents are gone. I don’t have much more to say than that right now, but the date needed to be marked.

Next Monday will be the seven-month anniversary of my mother’s death.  Strangely enough, it seems to me that even more time has passed since that day, and I have no idea why.  I remember a dear older friend telling me many years ago about her own mother’s recent death–”It doesn’t matter how old you are,” she said, “when your mother dies, you feel like an orphan.”  I was in my late twenties at the time but her words had a lasting effect on me.  The prospect of either of my parents dying was safely in the future, but hearing this from someone considerably older than I was unsettling.  I had expected that I would somehow be armed and ready to face my parents’ deaths by the time I’d reached my friend’s age.

My father died nine years ago, very suddenly but not entirely unexpectedly.  He had been diagnosed with congestive heart failure the year before, and one morning in November, a week after his eightieth birthday, he collapsed at home.  He was doing what he loved to do, puttering around the house with my mother nearby.  He did not have an advance directive–the EMT’s were called and he was rushed to the hospital but I think he had died before they put him on the stretcher.  Thank God.  As incredible as his death was to me, I was deeply grateful that it had been sudden, that all the decisions had been taken out of our hands.  My grief was low-keyed.  Once the shock wore off I was left with the phantoms, some of them pleasant and some of them hollow.

And I still had my mother, so–at 46–I wasn’t an orphan yet.

Now I am, and I think I understand my friend’s long-ago words.  I’ve lost the first love of my life.  This is still way beyond my comprehension, and my grief is like curtains that blow open and then close with the draft, letting in just a little bit here and there.  I’m not much of a crier, but every so often I startle myself with the reminder that my mother is no longer here and I feel very close to tears.  That’s all I can say right now.

My Mom died this afternoon at 2 PM.  My sister and I were fortunate enough to be with her when she stepped fully into the afterlife.  The Hospice nurse had adjusted her medications earlier, then the waters calmed and she seemed set on a peaceful course.  We noticed her hands becoming cool and her skin color changing.  Her breathing became shallower and shallower, and I knew she was on her way.  She took a last breath and was gone.

That moment was like a window flying open.  My mother’s spirit took off and all the bottled-up feelings came loose.   There has been so much grieving over the past few years–in increments–that right now I only want to piece together the mother I had for the first fifty-two years of my life.  I’m heartbroken but relieved that she might now be able to understand the past few years–why she couldn’t stay in her home, why her mother never came to visit her.

We each have to come to terms with death in our own way.  It’s not any nobler or braver to be an atheist than it is to believe in God.  The noble part is living by your beliefs.

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.

We got my mother back to Garden Manor today, but now in the skilled nursing unit.  Many of her friends (staff) from her old unit came by to visit her.  It was the most animated I’d seen her–she smiled broadly, like her old self.  Then she seemed to return to the place she’s been occupying more and more, somewhere deep within.  She sleeps a lot.  She’s having increasing difficulty swallowing.  At times we can hear her lungs softly rattling.

Hospice will be in tomorrow.  I am still second-guessing myself about the decisions I’m making.  My mother did leave a living will, which helps, but having to reiterate that she is not to be resuscitated forces us to articulate.  To say of someone you love: No CPR if she goes into cardiac arrest–What kind of love is that?  Sometimes I hear myself saying: “What would we rescue her for?  Another few years of miserable confusion?”  But that isn’t the reason.  I would keep her going no matter how confused she was.  I’m intuiting that it’s Time.  To everything there is a season, as Ecclesiastes wrote.

“He hath made every thing beautiful in his time: also he hath set the world in their heart, so that no man can find out the work that God maketh from the beginning to the end.”

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.

My mother and I met with the man who handles fiduciary matters for the VA here in Providence. He came out to Garden Manor. I arrived early and told my mother that someone would be visiting us in order to have me sign some papers so that she could have some extra income. I started to tell her that this was all the result of Dad’s WWII service but the look on her face told me that this didn’t add up, so I let it drop. She liked the idea of getting extra money each month–this is due more to her lifelong concern with making ends meet than with any awareness of her current financial situation. She does often ask me to give her some cash to keep on hand, claiming that she often needs it, and I usually put this off. When she first moved in I forgot to remove about $40 from her purse and the money disappeared. I’ve given her a few dollars here and there but that always disappears, too, so I won’t do that anymore. A friend suggested that I look for play money–maybe having some of that would ease her feeling of vulnerability. If I could find some that looked remotely like real money I might do this–it’d be interesting to see whether that would disappear, as well.

The VA man was very kind to my mother–he asked her a couple of the questions from the MMSE (”Do you know who the president is?” No. “When is your birthday?” March 31, 1922. “Who is this woman [pointing to me]?” My daughter.). I’d had to bring along an updated financial accounting of my mother’s affairs, plus a letter of recommendation (written by my boss) for myself. He explained the accounting I would have to give to the VA if I spent more that $1000 at one time on anything, and the end-of-the-year financial accounting that would be due. Then he inspected my mother’s room.

After he left, my mother said to me, “Since you did all the work, you can keep the money,” which made me cry a bit when I remembered it later on.

I’ve received a letter from the VA confirming that I am my mother’s fiduciary, and I’ve opened a trustee account at the bank for the money, when it arrives. She should be receiving a substantial retroactive benefit (considering we applied over a year ago), and I’ll have to get the VA’s permission to apply a chunk of that to the home equity balance (from which I’d been borrowing to pay her rent each month). The paperwork and regulations overwhelmed me at first, but, step by step, I’m figuring things out. At that point, I’m going to post an account of my experience on Debbie Burak’s site in the hope that it will prepare others.

My mother has been in a fairly good mood, although she has lately been preoccupied with the whereabouts of “the boys”–presumably students that she feels responsible for. I tell her that I’ve spoken to “the office” and that they will look out for the boys in her absence.

Last Sunday we went out to lunch at our usual spot, a creamery about a half-mile from GM. I could feel the woman in the booth behind us looking at us, and finally she leaned over and said to me: “Is that Mrs. P. who taught third grade?” I said yes and she told me that my mother had been her teacher, and that she was now a teacher herself because of my mother. “You are awesome,” she told her. My mother was eating her hot fudge sundae (the whole point of going out to eat) at that moment, but she paused for a minute and smiled, even though I know she didn’t recognize the woman. I whispered something about my mother’s condition to her.

So that’s where we are today, a snowy March 1st. I always feel as if I have so much to do, but I wonder if that feeling is self-perpetuating, a habit I’ll need to break. I’m thinking of putting it all aside today and walking over to a nearby college where Barak Obama will speak. Rhode Island has a primary this coming Tuesday, so in the past few weeks we’ve seen Hillary, McCain and Huckabee. At this point I intend to vote for Hillary but I can understand how appealing Obama is. He could actually be any race and still command the attention he’s getting. I believe that Hillary has the smarts and the experience to be president but I don’t underestimate the unifying power of presence, which Obama possesses. He’s smart, articulate, charismatic.

I’ve been thinking a lot about the symbolic aspect of the presidency–how deeply do the American people want to see themselves in the figure of the president? What happens when they don’t? This came to me when I was watching a documentary about Theodore Roosevelt, someone who was a problematic political figure before he became president upon McKinley’s assassination. I think he came to epitomize America as it wanted to see itself at that time. Brave, vigorous, smart, tenacious. It would be thrilling to me to look at the White House and see either Hillary or Barak looking back at me.

…since my last post. I don’t like neglecting this blog because I don’t want to suggest that my caregiving stopped when my Mom moved into Garden Manor. In many ways, of course, the caregiving changes. When we had a snowstorm a couple of weeks ago it was nice to know that she was safe and warm beneath a much broader umbrella of care than I could give her. My visiting routine varies, depending upon the class I’m taking, but we always go out for lunch and a ride on Sunday afternoon. Otherwise, I stop by for a short visit after work once or twice during the week. She still brightens up when she sees me.

Has our relationship changed? I suppose it has. Neither my mother nor I have ever been touchy-feely in our affections, but I find myself becoming that way with her now. Because I don’t seem to reach her with words all the time, I hold her hand or lock arms with her or rub her back when she gets agitated about something. I think this contact reassures her.

As I was driving home today from our visit I thought about the year that has passed since she moved. I remember thinking that I could somehow explain to her why she needed to live at Garden Manor, that I could talk her into the move. Of course I couldn’t do this–there’s no way around the emotional rupture of placing a parent in a care facility, especially if she doesn’t want to go and isn’t capable of understanding her situation. You just have to do it and brace yourself for the initial anguish. Remaking the relationship takes time. You just have to keep showing up and hope that, even though she often can’t remember your last visit, she knows in some way that you’re around, that she hasn’t been abandoned.

And you also have to learn her new language, a language that has no past tenses. If she’s anxiously wondering about someone who is long-dead or fretting about obligations that are long past, you don’t try to set her straight. Her truth is in the present and has to do with what she is losing right now. I don’t know what it’s like to lose the familiar, but this isn’t about me understanding. It’s about accepting and reassuring and appreciating whatever I can share with her right now.

As for me, I’m taking another class this semester and hoping to create a website as a final project. I’ve done some research on a race riot that occurred in Providence in 1831–the Snow Town, or Olney’s Lane, riots–and I’d like to figure out a useful and novel way of digitally presenting it. I adopted another dog back in August, and he is very sweet and extemely energetic and often destructive. So we are in obedience class right now.

I’m also still fighting for my mother’s Aid & Attendance benefit from the VA. Two weeks ago I wrote to one of my U.S. senators, Jack Reed, and explained that my mother had been awarded this benefit FIVE MONTHS AGO but the VA has shown no sign of appointing me fiduciary, despite my pleas. Four days after I mailed the letter I got a response from Sen. Reed. He and his staff got on the problem immediately, and this past Friday I came home to find a telephone message from someone at the VA, wanting to set an appointment to meet me and my mother next week. Hallelujah. I owe this success to Debbie Burak at VeteranAid.org and Senator Jack Reed.

And so, in closing, I promise I will not neglect my blog anymore, despite my schoolwork, puppy-training, the exciting presidential campaign and my concertgoing ways (in the past five months I’ve seen Bob Dylan, Elvis Costello, Amos Lee, Tori Amos, Van Morrison, and Richard Thompson). Until next time…