Archive for the ‘Here and now’ Category

Failure to launch

I think about this blog every day. I think about Mom every day. But thinking has not translated into action. For days and days, and weeks and weeks, and actually months, I have not written anything about Mom. Similarly, I didn’t do anything about Mom’s death once the memorial service was over and I returned to a new life, no longer a caregiver. I didn’t make a decision to ignore the things I needed to do. I’d call it a very serious case of avoidance: If I didn’t engage in tasks related to when Mom was alive or now that she had died, I wouldn’t have to consider how I felt about her being gone.

The activities director at the Alz center called me a few days after Mom died and asked what she should do with Mom’s belongings. They filled one bin and two garbage bags. She said she could donate them to other residents or to a local charity. I told her I wanted to see her things – mostly clothes, a few pairs of shoes, and miscellaneous trinkets that hadn’t been lifted by other residents in her seven years at the center – and then I’d return everything usable for other residents to have. Mom’s jewelry, some of her shoes, eyeglasses, stuffed animals and a variety of other items had disappeared over the years. Residents went “shopping” in others’ rooms – that’s how staff described it. (This was not theft, of course, but the result of confusion and memory loss.) So we were discouraged from having anything of value in Mom’s room. She had taken to wearing costume jewelry shortly before she moved to the Alz center from assisted living. And she was wearing glasses when she moved in. But those small and portable items went missing fairly quickly. I suspected that a replacement pair of glasses would disappear, too, or, worse, somehow cause Mom an injury. It was safer, really, to just let her go without.

I told the activities director I’d come in to get the items the following week. That would have been early November. On Feb. 8, accompanied by Patrick, I finally returned to the Alz center for the first time since Mom had died in late October. Her belongings were long gone, the staff member there at the time said, and that made perfect sense. And that means I didn’t have to go through them and think about what should go back to the residents and what didn’t merit keeping at all. Mom’s clothes were laundered so frequently that most of them were very worn. Not getting the chance to see her belongings caused me no anxiety, and potentially saved me from performing a sad task. But I did regret putting the center through the trouble. Meanwhile, I have many boxes of Mom’s belongings – mostly of sentimental value – in my basement. I haven’t gone through those, either.

While at the center, Patrick and I went to the skilled nursing section to have a short visit with Bobbi, who had led Mom’s nursing care in her last days. Bobbi put her hand on the counter and I put my hand on top of hers. “I just never came back,” I said. “It’s different for everybody,” she said. I didn’t have to explain a thing.

The same day, a Monday that Patrick and I both took off of work, we went to the funeral home to retrieve the urn containing Mom’s cremains. The director had called to ask me to take them home. After a certain amount of time, the funeral home has concerns about losing track of such things. And it really wasn’t their problem anymore. She didn’t say that, but there was no reason for the urn to stay there.

The urn is heavy. It is marble, a durable enough substance for burial. The plan is to bury the urn in a local cemetery. The funeral director had called the cemetery on behalf of my siblings and me to price out a plot. But I haven’t done anything to secure a burial site. To his credit, my brother Jeff, while in town for a music directing job, suggested we go to the cemetery to look at the possibilities. We found a stretch of a section that is open for the burial of cremated remains and stones flush to the ground. It’s a nice section with some trees. Mom liked trees. We’d like it if her final resting place could be near a tree, so we’ll see what we can do.

And then there was the bank account. I had joined Mom’s checking account about 10 years ago when she started showing signs of misunderstanding her finances. After I wrote a check for funeral costs that ran above the sum I had prepaid in 2009, the account had a balance of about $14. As the months passed and fees for a low balance were assessed, I got notices about the overdrawn account in my email. Finally, in late March, I went through the box of items from the funeral home to find a death certificate and went to the bank to close the account. The banker who helped me decided to waive some of the fees so I had to pay only $3.50 or so for letting the account become overdrawn – a kind gesture considering I had simply been negligent about closing the account. His wife’s grandmother had Alzheimer’s, he said. Maybe he took a little pity on me for that reason.

I’m kind of disgusted with myself for this behavior, this avoidance and neglect of my duties – especially since they were not really that daunting. The excuse I give myself is that I was on the hook for 10 years of caregiving, and the instant that responsibility went away, I shut down. Did things on my own time. Set my own deadlines. Had no Medicaid case worker or nurse or business manager to answer to. The thing is, the only thing that accomplished was punishing myself with more guilt. I guess I’ll never learn.

Being there

I read obituaries with some regularity. Lots of people report that a loved one died “surrounded by family” and sometimes even close friends. I did not include that tidbit in Mom’s obit. But I was there when she died. And so was Patrick. And, in a stroke of bad luck for me, so was the hospice social worker. She appropriately stepped away after giving me a small hug.

I think about Mom’s actual death, and that whole day, frequently. I had mildly complained to a hospice nurse earlier in the day that I hadn’t heard a peep from the social worker, which surprised me since Mom was actively dying. She had assessed me in two long phone conversations, so I just assumed that once the actual death was upon us, I would hear from her again. And I think it had been a kink in the system – she hadn’t been told that Mom was near the end. So she came in late on the afternoon of Oct. 27, shortly after Patrick had arrived after work. I had been there all day, save for my decision to slip away for a haircut. (It was a risk to leave for that, but I needed that haircut. And it worked out.)

It was a lonely day and a somber day, sometimes. I was focused on Mom’s breathing, wondering which inhalation would be her last one. I stared at her for hours. I chatted with people who stopped in – Alz center nurses and aides and hospice nurses, mostly. We were sort of jokey about how Mom was hanging on, doing it her way, maybe even being stubborn. I engaged in a very stupid Facebook discussion about Donald Trump – I have learned not to take the bait, but I was weak that day, and just generally worked up, so I had no tolerance for opinions counter to mine. I brought up Medicaid in the discussion, and Alzheimer’s disease. That is a regret I have about that day, that I bothered to engage someone I don’t know about a subject we will never agree on.

And then it was 5 p.m., and Patrick, the social worker and I were chatting. And Mom’s hand moved, catching my eye because she had been immobile for days. The hand above her blanket just lightly flapped, twice maybe. Her mouth opened just a little bit, and then closed. “Is that it?” I said. It had to be, I thought. We didn’t see any other signs of breathing. I think the social worker left to get a nurse. Patrick and I cried, and hugged. Why am I crying, I thought. I have been waiting for this to happen. It was inevitable. Her struggle was over. My struggle was over. But it was as involuntary as crying has ever been – there was no holding back. Nurse Bobbi, who had overseen Mom’s care, came in to confirm. Another nurse confirmed Bobbi’s confirmation, a requirement. “You stay as long as you want, for as long as you need to,” she said.

I touched Mom’s hand and kissed her face. She looked so terrible. Her skin had mottled – it looked like blood had collected in her hands. The area around her mouth and nose had turned gray. These are things that happen, I had been told. I understood that. But I confess that I am not pleased about my last view of Mom’s physical presence. It is hard to wait for a person to die and witness it. Then again, it was a privilege to be present for that. I’m glad she was not alone, even though she wouldn’t have known she was alone (I assume, anyhow). But it is such a private event in our lives, to die. Do we want people to be looking at us when we are our sickest selves? I know appearance should not, does not, matter at all. But it takes the human body some time to shut down, and what happens to the body is unfortunate, to put it mildly. So I remain torn about whether I was lucky to be there. Patrick and I didn’t feel a need to stay, to keep seeing her that way. We left rather abruptly, and no one judged. It’s just what was right for us. I had to revisit her appearance the next day, to look at a photo taken after her death at the funeral home to confirm that the correct person would be cremated. Of course, a necessary step. All that means that now, more than ever, I enjoy looking at photos of Mom to put that last view of her face out of my mind.

And after all that time, all this blogging (almost 7 years!), her death still felt so sudden. This was it? This was it. It was over. “It” being caregiving, sickness, stress, sadness, but also laughs, smiles, holding hands, hearing her say, “I love you,” taking walks, sharing root beer, her sweet tooth. Her life. After 10 years of her illness and my caregiving, she was gone. Just like that. Somehow, it felt too soon. I hadn’t had time to contemplate what it would mean for her to be gone physically. I had always assumed her final decline would be prolonged, that I would spend hours by her side over the course of weeks or even months, feeding her and trying to be a comfort to her. Instead, that period really last only one week. And, even though I have an odd and lingering sense of loss about that time not spent with her, her rapid decline was a good thing. A very good thing.

Trying to explain grief

I now realize how devastating it is to lose a parent, no matter the circumstances and no matter how long one has had to prepare for the death. I’m surrounded by people who know how this feels, and I’m ashamed that I didn’t more fully consider the depth of their loss until I experienced it for myself. I feel rather normal emotionally at this point, about six weeks after Mom died. I’m still a little more tearful than I used to be, triggered by unexpected things – most recently, the sweetness of two girls giving out free hot chocolate in my neighborhood. I also spent a lot of time feeling grumpy for the few first weeks I was back at work.

It recently occurred to me that rather than trying to summarize this period of grief, I can just quote myself – below are excerpts from emails I have written to people who have checked in on me since Mom died to ask how I was doing. They are loosely in chronological order. I am nothing special, but I have been in the blog business of sharing my thoughts and I suspect I will be thinking about Mom and what it was like to take care of her for the rest of my life.

So, I am functioning for sure and my performance at work is slipping only a little bit – I sometimes just feel like I’m missing a beat.

My work is now done, so there is lots of relief in that regard. Though I think my sadness is about all those years of illness Mom endured. 

I am doing OK. Occasionally weepy and frequently just plain in a bad mood. Surprised at how long it’s been since the death drama unfolded and then ended – time is going even faster than usual. I definitely let tears roll as needed. But I do hope I can get past being so grumpy sometime soon. I’m sick of myself.

I’m finding that my current frame of mind is that I was cheated out of more time with Mom during her decline. Isn’t that crazy? I feel like the death happened so quickly – it was so much more of a jolt than I think it should have been – or so I tell myself that must be what is going on. How great for her that she didn’t remain bedridden for weeks or months. And great for me not to have had to see her that way. And yet, I have this odd sensation – and an accompanying bad mood – that makes me feel angry at the way it played out. I swear I have a new frame of mind every day, and I’m mostly very grumpy. I like to have theories, and I think Mom was the closest thing I’ve had to a child, and so I am maybe feeling a dual loss of a parent and a dependent. It brings tears to my eyes just to type that. 

(I think that someday in this blog, I will explore this idea that I felt cheated out of part of the experience of her dying process – that it went so much more quickly than I had expected. Because this way of thinking does seem irrational and perplexing.)

I was surprised at how sad I felt, and how it has manifested as both grumpiness and tearfulness. I think, and one friend whose mother also died of Alzheimer’s has said the same thing, that something about the lengthy illness and helplessness associated with Alzheimer’s makes the death experience particularly painful because only then can we unleash the emotions we stash away while we are strong for our sick loved one. That makes sense to me, anyhow. … Though we are all different, of course. I cried for hours, no exaggeration, after my siblings left and I was alone with Mom on that Monday, the day before she died. I told Patrick it was a cry covering 10 years of grief and stress because I couldn’t think of any other reason for it to happen. On Tuesday, while I wanted her breathing to stop so this could all end, it was startling when it happened, and triggered another bunch of tears. All surprising to me, because it meant her suffering had finally ended.

(This was a message to a friend whose mother has dementia and is in a nursing home. I want to be clear – there is no contest here about who suffers the most pain when a parent dies, or that one kind of illness trumps another in terms of bad fortune. It just makes sense to me in my case that the stress and sadness of Mom’s prolonged illness took a toll on me that I have never – and still don’t, probably – fully appreciate. I’ve said so many times that my profound sadness about Mom’s death – after hating to see her live such a compromised life – has been a surprise to me, and for me, I think it’s because I need to recover not just from her death, but also from the last 10 years I spent so attentive to her life.)

I feel sad about how so many friends (you included, of course) have lost their parents in the time I’ve known them and I didn’t really give extended thought to what it was like for them. It is a shitty adult life event. That is my typical description of the experience.

The kindness of friends and strangers

Between Facebook and blog comments, emails, private messages, calls, memorial service visits, cards, gifts, Alzheimer’s Association donations, pops into my office for a check-in and a leisurely weekday lunch complete with coffee and a giant piece of chocolate cake, I can safely estimate that I have received more than 200 messages and other expressions of comfort and sympathy about Mom’s death. Isn’t that amazing? It is sort of like a wedding, when so much good will is directed toward the marrying couple. When we lose a family member, we are showered with love and concern at every turn. It is a nice feeling, and I have learned that I could definitely do more for my friends in this regard. It’s kind of an unfortunate way to learn a lesson – but that is how life is.

I am also learning that thinking much about Mom or being reminded of her triggers tears. (The most surprising example: I burped, and the sound reminded me of the gurgling sound in her throat caused by her upper airway problems.) And that – despite my always-there tendency to emote – anything that makes me frustrated or angry these days also makes me cry. It is still a fresh wound, obviously. But my somewhat fragile state is unexpected. For 10 years, I thought about the terminal nature of Mom’s illness. Even so, it took me by surprise that her death was such a sprint after that marathon. For her sake, that is a good thing.

I think the potential for crying has led me to keep an arm’s length from my wish to appropriately acknowledge all the kindness directed my way. I also get the feeling I have left some official business undone. Both of her sources of income have withdrawn their November payments, so that takes care of that. I received dozens of statements over the years about care covered by Medicare. I rarely opened them. Out of curiosity, I opened the most recent one that arrived in the mail yesterday, which indicated a variety of charges for care that abruptly stopped on Oct. 27, the day she died. There is an outstanding doctor’s bill that exceeds the amount of money left in Mom’s bank account. I still have to pick up her belongings from the nursing home. I thought about donating her clothes, but I want to see them again first.

I will take advantage of this blog to express my deepest thanks for the extraordinary support I have received, not just about Mom, but about the blog itself. I feel loved, cared for, understood, surrounded by a giant virtual hug. I love, care for and hug you all back, and I understand now how tough it is to lose a parent, no matter the circumstances.

Obituary

A slightly shorter version of this will run in the Columbus Dispatch Thursday, Oct. 29. Laura, Jeff and I worked on this together. The photo is from Laura’s wedding in 1988. Beautiful, isn’t she?

bonnie obit photoBonnie Ann Aitken Caldwell, 78, of Columbus, died Oct. 27 at Columbus Alzheimer Care Center. She was born on June 6, 1937, to Howard and Mavis Aitken in Springfield, Ohio. Bonnie played sports at Northeastern High School and was valedictorian of the class of 1955. She earned a bachelor’s degree in social work from Ohio State University, and held a number of professional positions in that field. Later, she put her accounting talents to use in the circulation department at the Columbus Citizen-Journal and Dispatch. She worked in the College of Education and for the Friends of the Libraries at Ohio State and completed her career in the Registrar’s Office, retiring in 1997. In her personal life, Bonnie maintained a close circle of friends throughout adulthood, enjoying intellectual pursuits and social gatherings. A lifelong learner, she had a great appreciation for the arts. She took frequent trips to New York City and traveled to visit her children, and especially enjoyed seeing her son’s musical performances. She loved a good book and a good laugh. She was an excellent and playful grandmother to Julia and Lily Edwards, who survive her, and offered a thoughtful ear and parenting insights to her older daughter. She is predeceased by her parents and brother-in-law, Gary Lough. She is also preceded in death by her beloved cat Petunia, and loved all of her furry grandchildren, too. Bonnie is also survived by children Laura Caldwell (Marc Edwards), Jeffrey Caldwell and Emily Caldwell (Patrick Keenist); a sister, Nancy Lough; and four nephews: Scott, Barry, Garth and Chad Lough, and their families. On Nov. 3, 2005, she was diagnosed with Alzheimer’s disease. For most of the following 10 years, and especially the last six at Columbus Alzheimer Care Center, she was funny, affectionate and social – an excellent subject for her younger daughter’s caregiving blog. Bonnie had two boyfriends and told stories in her own special language. Even with little strength, she could give her ear a thorough scratch and share smiles. Donations may be made in Bonnie’s memory to the Alzheimer’s Association Central Ohio Chapter or Friends of the Libraries at Ohio State. The family thanks the dedicated staff of Columbus Alzheimer Care Center. Thanks also to Gentiva Hospice. Calling hours are 11 a.m. to 12:45 p.m. Saturday, Oct. 31, at Southwick-Good & Fortkamp Funeral Chapel, 3100 N. High St., with a brief memorial service at 1 p.m. A celebration of Bonnie’s life will follow from 2-4 p.m. at Studio 35 Cinema & Drafthouse, 3055 Indianola Ave.

Gentle exit

Bonnie Caldwell
June 6, 1937 – Oct. 27, 2015

bonnie in maine

“It’s the end of an era,” my brother said over the weekend.

“She never wanted to leave a party,” my sister said.

“We should not be surprised she’s doing it her way,” the activities director said.

“She’s my favorite dancer,” an activities staffer said with a big smile.

“She’s holding on for something,” a restorative aide said.

“You’re on this journey, and you’re the only one who can finish it,” a hospice nurse said.

“It was our privilege to take care of her,” nurse Bobbi said, with tears in her eyes.

“Today makes sense: One last Tuesday night gathering at dinnertime for the three of us,” Patrick said.

“I love you, and I know you loved me.” The first of my many goodbyes.

Vacation, interrupted

My 50th birthday is Thursday, Oct. 22. And, according to a prediction by a nurse at the Alz center, Mom could die that day. Or even sooner. Patrick and I long ago planned a week in Bald Head Island, NC, a favorite spot of ours, for a celebration of this birthday. We went to London for his 50th birthday last winter to see a series of soccer matches. Bald Head Island is more my speed: not much to do, no cars, maritime forest, natural beauty at every turn, kind people, a familiar setting (this is our 11th or 12th visit since 2005). We arrived Sunday evening, and we are leaving tomorrow, Wednesday morning, three days earlier than planned.

The last time I saw Mom, she seemed to be doing OK. Compromised physically, but able to eat and even say a few words. The week leading up to the vacation was typically hectic at work, and I wasn’t able to see Mom before I left. But I knew I would be home on Sunday, Oct. 25, and thought I could get back on schedule to feed her lunch that day.

I got a call from a hospice nurse on the drive to North Carolina on Sunday. Mom had appeared to be in some respiratory distress, and had been agitated, so she was given anti-anxiety meds and had calmed down. It appeared she might be having some trouble swallowing, which is a classic sign of end-stage Alzheimer’s. My interpretation was that that would be something to watch for.

On Monday, my main nurse contact at the Alz center called to update me, but I missed her call. A different nurse – a manager – told me when I called back that the hospice company had recommended withdrawing food because Mom was at risk for choking or aspirating. But he said that was against the Alz center policy – food is given as long as it can provide comfort. It being close to lunchtime, I assumed that meant that Mom would be fed.

When I finally connected with the nurse I am closest to, she told me she didn’t think Mom’s lungs were a problem, but that some gurgling and wheezing sounds were coming from her upper airway – also an indication of the potential for problems swallowing. This nurse gave Mom some drops to treat the dryness in her throat, and she said Mom seemed very interested in having something in her mouth – as if she wanted some food or drink. She agreed that Mom should receive food as long as she was alert and interested, because it was a source of comfort and pleasure for patients who don’t have much else to look forward to.

The suggestion that Mom would not be fed – while she was still alert, breathing fairly normally and showing enough strength to repeatedly pull an oxygen mask off of her face – surprised and angered me, as the hospice nurse hadn’t said any such thing to me on the phone on Sunday. After talking to my nurse friend, I called the hospice social worker to complain, and she said she’d look into it and assumed there might have been a misunderstanding. I called back to the Alz center at around 2 to discover Mom had not been given a lunch. I insisted that someone feed her a goddamn meal, and to puree her food if necessary to prevent choking. An aide got right to it.

When nobody called me before or during a long walk around the island today, I felt some relief that no news about Mom was good news. And then my main nurse contact called me at 3 in the afternoon, the end of her shift. Mom had changed significantly in one day. She ate yesterday, but could not swallow today. She had a persistent fever that didn’t respond to Tylenol – a suggestion that the part of her brain that regulates body temperature might have been damaged by the disease. The rapid progression suggested to her that it could be a matter of a day or two until Mom dies – though one never really knows for sure. When I said I would head back to Columbus, she said, “Don’t rush. Don’t get into an accident. If something happens before you get here, just know you have been a good daughter to Bonnie.”

So Patrick and I will hit the road tomorrow. My brother and my sister and her family are looking into flight possibilities. Mom is being kept comfortable, mostly with morphine. Selfishly, I’d like one more visit with her before she dies. Just to squeeze her hand, brush her hair from her face and tell her goodbye. But for her sake, the sooner she is at rest, the better. This life of hers is not worth living, and hasn’t been for months. The nurse even said that if Mom dies before I can get there, it could be the way Mom wanted it – to spare her children the agony of a death watch. If that’s the case, I’m comforted knowing that the sights, smells, sounds and touches of those around her are very familiar. Before she leaves this earth, Mom will be surrounded by the Alz center staff members I so admire – and the closest thing to family that Mom has known for more than six years.

Hospice being a good thing

Mom has been deemed eligible for hospice care. And I am glad. To me, it doesn’t mean death is imminent – though a life expectancy of six months maximum is an eligibility requirement for someone who enters hospice. It means she is getting more care that is directed at keeping her comfortable. Already, the hospice nurses have added anti-anxiety medicine as needed and replaced extra-strength Tylenol with Tramadol to treat the pain from her open foot wounds. There is a standing order for morphine if she cries out in pain when nurses change the dressing on her feet. I don’t really feel good about having a beef with Mom’s care on the other side of the Alz center, where she spent six years, but she went quite awhile without pain medication after the sores opened up on her feet. I don’t understand that. But it’s the past, it was remedied on the skilled care side when she moved, and she is more alert now, I assume because she feels better.

The hospice eligibility determination came just days after my best lunchtime experience with Mom in months. When I arrived to feed her, her eyes were open and she was vocalizing a lot. She seemed a little restless – I sense she doesn’t have complete control over her limbs even though she can still scratch her nose or ear as needed. She might have a little spasticity problem – stiffness and tics – that I suppose could be an indicator of the latest deterioration in her brain. She responded to my presence and seemed more alive, I guess you could say, than she had for a long time.

I was surprised this past Sunday to find that she had not been wheeled into the dining room for lunch. The staff members routinely put her to bed after breakfast, and I knew that. She is a very good sleeper. But I had never known them to leave her in bed during a meal. I found her asleep on her side hugging a body pillow. She woke up without much trouble, but I could tell I had startled her. An aide brought her lunch in and repositioned her so she was somewhat upright. I stood to feed her under these awkward conditions and she did very well, chewing with enthusiasm. It was harder to get her to drink – I would try to push her head and shoulders forward just a tad, but she does not – or maybe can’t – help at all with leaning forward and it seemed to irritate her. She said a few words: I asked her if she wanted some water, and she said, “Yes.” Very clearly. And when I was rearranging the collar of her shirt to make sure I hadn’t spilled any food on her neck, she said, “Don’t do that!” The words, when they are spoken, aren’t necessarily as clear as they used to be, but I can tell the difference between an actual word and her usual nonsense syllables.

The Alz center staff initiated the hospice evaluation after testing Mom’s albumin, a protein made by the liver that circulates in the blood. The test showed that her albumin was low. The social worker described this to mean that Mom’s body is working so hard to keep her organs functioning that her skin is effectively being neglected and breaking down. Hence the foot sores. And on top of those, abrasions on both knees (one has scabbed up and healed and the other just appeared) and a scratch on her face, near her eye (we think she did this to herself, probably). It doesn’t take much to break her skin now.

The social worker was very timid about telling me over the phone that the staff thought a hospice evaluation was in order. I assured her that I could handle this suggestion emotionally, and that it was OK with me to go forward. During the first evaluation, a nurse spent time with Mom while I talked to a social worker and filled out admission forms. It turned out that the nurse couldn’t convince the doctor in a phone call that Mom was a good hospice candidate. I found it a little disappointing. Then, about 10 days later, the admissions director called to tell me Mom was now being admitted. She showed enough hints of decline in the span of those days to become eligible. The first nurse had shown me a checklist that is part of a hospice eligibility assessment – weight loss, speech limitations, immobility, etc. One of the last things to go in Alzheimer’s patients, according to the checklist, is the ability to smile. Mom can still smile, though it’s rare. I’ll be watching to see if that changes.

Rescue me

I lost another dog, my beloved Bambino, on Aug. 3. He had a tumor in his sinus cavity, and it started to interfere with his breathing. He was still craving food and interested in taking walks and chasing chipmunks, but he had three bad nights of impaired breathing, so we asked our vet to make a house call and peacefully end his misery. He didn’t act miserable, but, as our vet said, “He is fighting for every breath.” I feel like I’ve been fighting tears ever since. The grief has taken me by surprise.

Bambino with Mom - probably Christmas of 2007.

Bambino with Mom – probably Christmas 2007.

I don’t know if I took his death extra hard because I’m already in a low-level perpetual state of grief or if I have been feeling more gloomy about Mom recently because I had a sick dog that I knew was going to die of cancer – and then he died. It’s not important to know, I suppose. But I wonder. I imagine there is an uncomfortable truth influencing lots of my thoughts: that we can humanely euthanize our pets to end their suffering. Meanwhile, Mom’s condition now looks like suffering more than it ever has. And there is nothing I can do to change that, except hold her hand and stroke her head and hope my touches don’t scare or annoy her.

And then last Sunday, on Aug. 23, we adopted a new beagle named Carrie from a shelter. She had been caught as a stray with her presumed sister, and someone adopted that sister rather than keeping the two together. We had been watching the shelter’s site for a few weeks, and when we saw her story, we felt compelled to scoop her up and give her a home so she wouldn’t be lonely. Her arrival caused a night or two of anxiety for all of us (including Henry, a beagle we adopted from the same shelter a year ago), and I worried that perhaps I had been hasty in rescuing what I called this tiny tortured soul. But we have all adjusted nicely and it is comforting to have her around. Her cuddles are good medicine.

Laura feeds mom

Laura feeding Mom her lunch – French fries and a chili dog.

In between those two events, my siblings and significant others and nieces and nephew came to town for a family reunion with my dad and stepmother over a long weekend. This created a rare opportunity for Mom and her immediate family to be together. We all – sister Laura, brother Jeff, nieces Julia and Lily and I – visited Mom for lunch on Friday, and most of us took turns feeding her. Mom was silent for the most part and barely opened her eyes. There was nothing much to celebrate, but it was an occasion to be marked in our lives and in Mom’s.

Bonnie in her new room at the Alz center, August 2009.

Bonnie in her new room at the Alz center, August 2009.

Laura and I met again on Monday, after everyone else had gone back home, and fed Mom her lunch. One doesn’t want to be too negative while visiting a very sick loved one. But truth be told, it is a rather dismal affair to spend time with Mom at this point in her illness. I am still visiting once a week to feed her at least one weekend lunch. Today, her eyes were more open than usual and she looked at me from time to time but didn’t register that she was seeing anything significant. She dutifully ate and drank. I said encouraging things to her. She smiled just once. When she was done eating, I rubbed lotion on her hands and forearms. She knitted her brows, and I tried to massage that fretful look off of her face.

I think about this blog quite often, but sometimes I put off writing a post because I am tired of being a downer. While fixating on what kind of post to write, I missed a milestone – Aug. 28 marked the sixth anniversary of Mom’s move to the Alz center.

It’s another one of those things about Mom that represents the passage of time and is not worthy of celebration – except that her experience there has been as good as an Alzheimer’s patient’s nursing home experience can be. That is something to be thankful for.

Rapid decline

Mom’s disease has progressed quite quickly. I’m both alarmed by it and also oddly comforted – because maybe after such a long period of stability, she won’t linger in what seems to be a less pleasant state. And that will mean she is at peace. After feeding her today, I talked briefly with the receptionist at the Alz center. I said I’m concerned that at this point, she could be suffering. The receptionist, whose husband died of Alzheimer’s, doesn’t think so.

Mom had a birthday since I last wrote, and is now 78 years old. Patrick, his mother and I left for vacation on her actual birthday, June 6. I visited the night before to feed Mom dinner and wish her a happy birthday – as if that mattered. It still feels like something I should do even as I know it’s a meaningless gesture. (Or is it?) The day after we returned, I went to feed her Sunday lunch. I was surprised by how I found her.

She was in a wheelchair - a first - and slumped over, asleep, just before dinner. I have rarely seen her sleep like that.

She was in a wheelchair – a first – and slumped over, asleep, just before dinner. I have rarely seen her sleep like that.

I sensed from casual conversation that Mom was in a wheelchair as a matter of convenience, because she had begun to have trouble even just standing, let alone walking. I got a call a few days later, and was told that aides had found a blister on Mom’s foot, which could have been part of her problem. So treatment was planned for the blister, and I said that sounded great.

I didn’t make it to the Alz center on Father’s Day. Today, two weeks since the last visit, I arrived just in time to feed her lunch. And this is how she looked.

Mom was having a fitful sleep. Her legs were wrapped up in padding, she had a blanket over her lap and she was in a specialized wheelchair that tilts.

Mom was having a fitful sleep. Her legs were wrapped up in padding, she had a blanket over her lap and she was in a specialized wheelchair that tilts.

Thankfully, being numbed by this discovery kept me from unleashing fury on any staff members. I had not been told she was permanently in a wheelchair and I certainly knew nothing about padding wrapped around her calves as a treatment for her legs. For as long as she has had Alzheimer’s, Mom has had very swollen calves, ankles and feet. Maybe they’re worse now. But if they are, no one told me. I tend to give the Alz center the benefit of the doubt. But this was stunning to me, to see Mom like this without a phone call to warn me.

It was also stunning to see her take on the frail look of a very advanced Alzheimer’s patient, which, of course, she is. I woke her up to eat and she did open her eyes and dutifully accept her food and drinks. Mom would occasionally vocalize, but her voice was very raspy and weak. I talked to her about my brother’s upcoming visit and complimented her shirt, which I believe my sister bought for Mom when she moved from assisted living to the nursing home in 2009.

At one point, I asked her if she liked her mashed potatoes. “Yeah,” she said. I laughed, happily surprised to hear an appropriate answer. And she gave a very slight smile. Two weeks ago, she had smiled broadly during lunch – almost a smile of pride after answering one of my questions. I enjoy those brief looks of recognition, but they also haunt me – is there more to Mom than meets the eye? Could it be her physical decline shields an ability to express an emotion? I know, intellectually, after her many years of a “slate wiped clean,” as I have described her cognitive abilities, that this is highly unlikely. But seeing her change so rapidly fills me with questions about what might be going on in what is left of her mind.

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