Archive for the ‘All about me’ Category
I revisited the caregiving life recently when I was interviewed for a blog post on OurParents.com titled “Preparing for Dementia.” A writer had found my blog and asked me to be a source for a story she was writing about moving a loved one into long-term care. I thought I’d be one of many people quoted, but I’m the only one. So various components of the story of Bonnie and Emily are sprinkled throughout an article otherwise offering some advice for people making decisions about long-term care for family members with dementia.
The interview was conducted via email, and my answers were lengthy. I like the quotes that the writer selected for her story. I felt some pangs of guilt over the references to Mom still driving after her Alzheimer’s diagnosis and then having an accident (in which no one was hurt) that abruptly ended her driving for good. But then again, what to do about driving is a classic dilemma for families dealing with Alzheimer’s, and maybe our experience could help convince someone to stop the driving before an accident happens.
The writer sent me a link to the story Monday. Today, I feel sort of melancholy. Coincidence? Possibly.
Even if it did make me a little blue, I was glad to do it. There is some joy in recalling that my experience with Mom was quite tolerable as far as these things go – a truth it took me some time to appreciate. The post covers the move to assisted living, and then to the Alz center, and how Mom made friends and adapted well to the changing environments. And I am always grateful for the chance to share my belief that moving a family member to a nursing home does not represent failure or selfishness. It can be better for everyone, including the patient.
These are the closing paragraphs:
“Bonnie Caldwell passed away in October 2015, and Emily considers it an honor and privilege to have seen her mom through her final years, from Assisted Living to Skilled Nursing care.
“‘Moving a loved one to long-term care is not betrayal, but a loving act,’ says Emily. ‘I had so many special moments with Mom, just holding her hand and taking a walk. She was childlike, and very sweet, and that’s how I remember her now.’”
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.
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.
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.
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.
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.
For so long, I had no change to report about Mom. She walked, talked and fed herself and maintained those functions without much obvious decline for quite some time. I wondered how long it could possibly last. Sometimes I lamented the fact that her illness was prolonged by this stability. But she was predictable, for a very long time. And I could have pleasant visits with her because she would laugh, she could enjoy a root beer or a Frappuccino, we could take a walk and hold hands, and she could speak the occasional meaningful phrase. She noticed when I arrived and she could still pucker up and give me a kiss when I said goodbye.
Now, those functions are basically gone. I’m told she can walk once people help her stand up. But I can’t lift her out of a chair by myself because she does nothing to assist the effort. She doesn’t vocalize much at all, and almost 100 percent of what she says is nonsense syllables. I can’t even guess what the sounds mean, but I try to maintain a steady stream of affirmative responses. She might occasionally break into a smile. She very willingly eats whatever she is fed. But she remains impassive. Eating doesn’t seem to give her any pleasure, as it has in the past. Even pie doesn’t produce much enthusiasm.
I once engaged in a comment thread on a New York Times blog post about whether there could be joy with Alzheimer’s. Sure there can, I said. At that time, Mom could be a source of joy for me, and I hoped my attention gave her some joy. She hadn’t known me for a long time, but she liked me. She saw me as a pal. She might think I’m a pal now, but she can’t show it. I’m afraid that any joy associated with visiting with Mom is gone, for her because she’s a blank slate and for me – because she’s a blank slate. This reality is weighing on me.
I am pretty confident that I’ll get used to this, especially if Mom’s decline continues at such a slow pace. It will become the new normal. That will be helpful because right now, I don’t like myself very much. My outlook on so many things – Mom, employment, housework, yard work, summer heat, my dog’s health, my own aging, travel, exercise, free time, finances – you name it – is grimmer than usual. That’s saying something. I’d like to snap out of it.
I’m used to hating Mother’s Day at this point. The marketing was the first thing to get to me when Mom was no longer a candidate for a gift – because she couldn’t understand the concept of a gift anymore. The marketing gets more obscene every year so I just try to dismiss it. I don’t know why this year has been sadder than usual for me. But I haven’t enjoyed the Mother’s Day season and I’m glad today marks its end. (I acknowledge that many people enjoy this holiday and I am hardly the only person who finds it difficult. I also acknowledge I am a big downer. That’s why I waited until bedtime to post.)
It being Sunday, I fed Mom her lunch. This has become a routine, though it is still somewhat new. I was late and an aide was feeding Mom when I arrived but she was happy to be able to tend to something else. Mom dutifully accepted bites of pork, cooked carrots, hot cereal and fruit cocktail. I dribbled water down her chin only once. I noticed that she would pick her teeth with her finger whenever the meat got stuck. She also scratched her ear. She barely acknowledged my presence, and she made only a few minor reaches toward her tray as if there were still some muscle memory there about what it means to be eating. But she knew how to remedy that sensation of having something stuck in her teeth. And she knows how to scratch an itch. Her cough reflex is in good shape, too. She had a minor choking response to a bite of fruit cocktail and she was able to cough her way out of it. I was watching pretty intently, wondering if I was going to have to help her. She ended the coughing with a very big sneeze. Taking all this in, I couldn’t help thinking that her physical decline is distressing, but its unpredictability is also sort of fascinating. I just don’t understand how some abilities still exist while others don’t. But nobody understands these things, which is why Alzheimer’s is such a disaster of a disease.
A nurse who knows me came by and tried to pep Mom up, patting her back and nudging her shoulders. She asked Mom what my name is, and told her repeatedly to wake up and have a visit with me. Mom did show some signs of life – she laughed a few times and spoke a few nonsense phrases. I don’t know if she ever says Emily anymore. She barely opened her eyes. I appreciated the nurse’s effort. But I don’t like the idea of having to convince Mom to be lively. I did move my chair to her other side because her focus seemed to be directed that way. I talked to her a lot, telling her about my brother and sister and nieces and how they’d all like to be able to talk to her on Mother’s Day. And I mentioned that Patrick ran a marathon. Shortly after the nurse walked away, I said, “Hey, Mom, are you in there?” And she said, “Yeah.” So interesting. And a little bit later, she said, “I like you.” I was getting ready to leave, and I said, “I like you, too. I love you.” She was starting to drift off.
It was a teary week leading up to this day. Many of my friends have lost their mothers, and Facebook was full of posts about daughters and sons missing moms who have passed. I can relate. And not. The toughest thing was a conversation with a friend over breakfast on Saturday. Her relationship with her mom is complicated. But she talked about her mom’s insights into some professional relationships my friend has, and it struck me how much attention her mother is paying to her life. She knew names, events, emotions, all kinds of things. My mom was an intellectual. She liked a good conversation. I’ve missed out on 10 years of her listening, and asking questions, and offering support. And just knowing me.
It has become pretty clear that I don’t visit Mom very frequently these days. I don’t write about every visit, so I see her more frequently than I blog about her, but it’s fair to say that on occasion, I let a significant amount of time pass between visits. I don’t think I would say I am avoiding Mom. When I’m with her, we laugh and smile and chat and walk and hold hands. I give her little massages and run my fingers through her hair. I examine her and, for so long, I’ve seen nothing that causes alarm because her status has been stable. What I’m avoiding, I’d say, is what follows: Every time I leave the Alz center, I choke up on the way out the door. I rarely produce real tears, but without fail, I say, out loud but to myself, “Oh, Mom.” I think about what could have been if she hadn’t gotten sick. I wonder if she comprehends anything I say to her. Now that I am middle-aged and sense that I am like her in many ways, I miss talking to a mom who has a thoughtful response based on her own experiences.
This avoidance is also behind my reduced blogging, I suspect. While the reflection on Mom’s life and illness has done me a lot of good over the years, it also can be taxing. And it can hurt. And so, over and over, I let another evening go by without writing about Mom.
I was wrapped up earlier in August with the fact that as of Aug. 28, Mom would had lived at the Alz center for five years. Five years. Seems incredible to me. For days and days, I knew the anniversary was coming up. And then it came and went without any notice from me. I couldn’t believe it when I realized that. I may have been especially looking forward to the long Labor Day weekend. Maybe busy at work. But it didn’t occur to me that the anniversary had passed until I went to visit on Labor Day, Sept. 1.
I wondered if that was something else to avoid – the mixed emotions I have about Mom reaching a five-year anniversary in this nursing home. I hope it’s become clear that I don’t wish that she would die. But there is little joy in an anniversary related to a prolonged existence like this, even if she can laugh and dance and enjoy her meals. The good thing is, of course, she doesn’t know she is living under terrible personal circumstances. But I know. Every day, and every night.
I find her stability mostly bewildering – how can it be that her decline has been so slow for so long? That for so many years her brain’s slate has been “wiped clean” as I tend to put it, as far as memory and clear thinking are concerned, but her physical functions persist? The most evident change is the loss of words despite her constant vocalizing. Some words still slip out, but rarely. Whenever someone asks, I say she can walk, talk and feed herself. She shows signs of enjoying social interaction with me and others. She still cracks herself up, or laughs at something I say or do. Her default setting is content for the most part. Even her combative approach to showering and hygiene has tapered off.
An aide told me when I was there on Labor Day that he has Mom figured out: When she wakes up in the morning, she doesn’t want to be rushed. She needs to sit up on the bed and collect herself, shake the cobwebs out, before she wants anyone helping her stand, go to the bathroom and get dressed. He is also the aide who, in the past, said that when Mom was angry in the shower and yelled “I hate you,” he would reply, “I love you, Bonnie.” The Alz center staff is so terrific.
So, I’ve stopped avoiding long enough to mark this occasion, the start of Mom’s sixth year at the Alz center. One can only guess what it might bring.
I am honored that I was asked to participate in a social media event to call attention to the challenges facing caregivers of aging parents. It is hosted by Caring Across Generations (on Twitter, follow #blog4care and/or @CaringAcrossGen). I am technically challenged, however, and messed up an attempt to reblog a post from November 2013. It appears below, and the original, with a few comments, is here. I selected this post because the “New Old Age” blog post that triggered it covered an important issue: the health of caregivers. Could it be that caregivers, despite the stresses of taking care of a sick loved one, somehow experience a gain in terms of their own health? One study suggested that might be the case. But I write about research for a living and I am aware that one study is … one study. Still, the suggestion that there is a “caregiver gain” intrigues me. I do worry about the physical toll of the long-term stress I encountered earlier in Mom’s illness, and wonder if the slow burn of relentless daily thoughts and worries about her might shorten my life somehow. But psychologically and intellectually, I appreciate where I stand on the issue of caregiver health: In my opinion, my health is as important as my mom’s. It would be very difficult to convince me otherwise.
NY Times asks: Are caregivers healthier? Jury’s still out
Posted November 2, 2013
I read the “New Old Age” blog in the New York Times when I can, and a recent headline caught my eye: “Are caregivers healthier?”
The post is about David Roth, director of the Johns Hopkins Center on Aging and Health, who published a recent study in The American Journal of Epidemiology that lends support to the “healthy caregiver hypothesis.” As writer Paula Span describes the work, Roth inserted a few key questions into a large national stroke study, enabling his team to compare about 3,500 family caregivers older than 45 with noncaregivers of the same age, gender, education level and self-reported health. After an average six-year follow-up, he and his colleagues found that the noncaregivers had significantly higher mortality rates. Nine percent of them had died, compared with 7.5 percent of caregivers, who were 18 percent less likely to die during the six-year period — a nine-month increase in life expectancy. That amounts to “a considerable survival advantage” for caregivers, Dr. Roth said.
Span also notes: Of course, you don’t need to be a statistician to see that if the burdens of caregiving can be overstated in studies like these, the benefits might be, too. … Some people in some situations find that the responsibilities of caregiving (a.k.a. “caregiver burden”) take a toll on their own health and well-being. For others, a different set of conditions may produce what gerontologists call “caregiver gain,” including both psychological and physical benefits.
Span solicited comments. So far, there are only 11, which seems alarmingly low. Mine is among them, and it has received 8 recommendations from other readers:
For me, taking care of a mother with Alzheimer’s sharpened my perspective about what is important in my own life. I turned 40 about two weeks before she was diagnosed. I was keenly aware of research detailing the health effects of stressful caregiving. I took a pay cut to change jobs, leaving a very stressful office for a job with a saner pace and a wonderful boss. I started therapy, enrolled in a clinical trial about caregiver health and began blogging. Eventually, I took up meditation. I never cared for Mom in my home, but I have been her POA and the “responsible party” since her diagnosis in 2005. There is so much guilt, so much concern for the patient’s well-being, of course, and just endless decision-making to do what’s best for the patient. But I have been adamant that caregiving would not ruin my life. It might sound selfish, but I think it’s also fair. Why would my health and life have to take a back seat to my mom’s? In a nursing home devoted to patients with dementia, she is safe, content and her physical health is better now than it was 10 years ago. In my caregiver support group, I have frequently made a point of saying: “We matter, too.”