Archive for the ‘All about me’ Category

The weight

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.

Melancholy on Mother’s Day

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.

I couldn't get Mom to open her eyes. She did just once while I was there - to scratch an itch on her nose.

I couldn’t get Mom to open her eyes. She did just once while I was there – to scratch an itch on her nose.

2015-05-10 13.13.41

We did hold hands from time to time. And sometimes she gave my hand a little squeeze.

20150510_131659

And then, she dozed off. This is part of the routine.

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.

Avoidance

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.

Revisiting NY Times asks: Are caregivers healthier? Jury’s still out

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.”

Aches and pains of everyday life

I’ve had a mild stomach ache for a few days. And headaches – possibly sinus issues. Worst of all, persistent pain in a muscle near my hip, which I suspect is compressing my sciatic nerve.

When I had these tales of woe as a young person, Mom would say it sounded like I had a case of the aches and pains of everyday life. I haven’t thought of that phrase in a long time, but it sure applies today. And it makes me smile to think about it, and to miss that simple exchange between mother and daughter. I was frustrated by that response as a kid. But I think now, as an adult, that it offers useful perspective. I am not actually ill, after all. Just a little inconvenienced.

I was thinking earlier about writing a post and I was going to attribute my aches and pains to stress. And maybe that’s a contributing factor. But I prefer the idea of just considering them a passing bunch of aches and pains that will come and go.

I do think I am experiencing a slow burn of steady stress, partly related to Mom, partly related to figuring out when our dog with cancer’s life is no longer worth living – for him, partly related to a variety of pains of everyday life that aren’t physical. Nothing so very serious. Just there. And sometimes more pronounced after I see Mom.

I visited the Alz center Saturday after a bit of a hiatus. The last time I had visited, Mom was sound asleep. I sat for a short while but she didn’t wake up so I didn’t stay. On Saturday, she was eating her lunch when I arrived. An aide was sitting beside her, alternately feeding another resident and feeding bites to Mom. This surprised me because as far as I knew, Mom was still able to feed herself, albeit usually without utensils.

I must have looked alarmed. I said, “Does she need to be fed?” And the aide said she just helps Mom when she has a chance. I didn’t mean to accuse her of anything but looking back, I think I sounded a little harsh. That just would have represented a big change – that I may or may not be prepared to accept. I really like this aide, and she is very good natured, so I don’t think she took any offense.

I sat down on Mom’s other side. I lifted a potato wedge to her mouth and she bit half of it off. She picked up chunks of chicken and ate those, too. I fed her some spoonfuls of ice cream but she eventually took the cup from me and slurped it all up. The aide put the glass of water near Mom and Mom grabbed the glass and said, “Water’s nice.” The aide helped with that interpretation. Which made my heart sink a little. I don’t hear Mom enough to be able to be the first to interpret her jumbled phrases.

When she was finished eating, I lifted her out of her chair to take a walk. Sometimes I’m timid about coaxing her to do something but I’ve seen her respond enough times to being pulled up by her hands that I gave it a try. As she got to her feet, she started tipping backward and I grabbed her and hugged her firmly. We both held the hug and laughed. And then we started to walk.

Mom continues to talk a lot, but doesn’t say many actual words. As we rounded a corner, though, she said, “I can’t understand. I can’t understand.” She seemed a little too distressed for my liking so I just told her it was OK, that she didn’t have anything to worry about. She found her way to a chair and sat down. I leaned on the arm of the couch next to her and watched her briefly. She kept her eyes downward and I assumed she might be tired. I put my face near hers but she wouldn’t look at me. She closed her eyes. So I kissed her cheek and left.

And I’ve been wondering ever since if Mom gets any joy at all out of my visits.

Some self-promotion as I mark 5th blogiversary

First, may I just say that today is the 5th anniversary of the start of this blog. I’m glad I remembered this year on the actual day. Thanks so much for reading and commenting and supporting me.

I’ve had the interesting experience of being interviewed twice recently for stories about caregiving or Alzheimer’s. About a month ago, a writer for the website Caring.com sent me questions in email for a story, asking me about how blogging has helped me in terms of creating a community and offering me a source of reinforcement and support. The site is one that has recognized this blog, having deemed it one of “18 Great Caregiver Stories on the Web.” The story appeared online without any warning, and I knew only because my stats indicated a few visits to the blog came from the Caring.com site. This is my favorite passage: Writing her blog has also proved therapeutic, Caldwell says, allowing her to forgive herself for mistakes and gain insight into her emotions. “Writing about these experiences has been a way for me to support myself, in a way — to say ‘out loud’ what I think and feel and not apologize for it.”

And then, my colleagues at the university medical center produced a video story for release yesterday about a new self-administered test developed by an Ohio State neurologist that gauges cognitive function – and can be used repeatedly to detect changes over time. The doctor who created the test diagnosed Mom and treated her until she moved into the Alz center, so I am a big fan. When these video packages go out, many news stations run them as is. But the local CBS affiliate asked for a family member of an Alzheimer’s patient who could talk about the test and its potential value for other patients and families. My colleague (and longtime friend from college) asked me if I would be willing to be interviewed, and I did not hesitate to say yes. It turns out the national network asked for the local station’s video, and, lo and behold, today there I was in a video appearing on the national network’s news site. Apparently, this video – a combination of the package produced by the medical center and its partner production company and two short segments of the local video of my interview – was picked up in some other markets, including CBS in New York City. Gulp!

The most important piece of information is the existence of this test, which anyone can take at any time. A whole newsroom devoted to the story is online here if you’re interested to know more. But then there is my participation, which – what can I say? – tickles me. During the interview, I showed the videographer and reporter several photos of Mom and even videos from this blog – and they used quite a bit of that. It’s a real treat to see Mom’s images make up so much of the story, to show a real person with not just a disease, but a history and a current life that I and others try to make as worth living as it can be.

I definitely hope this blog helps lift others who are beleaguered by the caregiving experience, that it helps others know they are not alone even if caregiving feels like a very lonely experience. But there is no denying it helps me, too, as a therapeutic tool and, come on, I’ve got to be honest, it is a vehicle through which I get attention as a writer, as a caregiver, as someone who is rewarded by the interaction that results from the blog’s existence. And so, being considered a worthy source for a TV news story about Alzheimer’s is rewarding, too. With that confession, here is the CBS story. (It takes a moment for the video to load, and of course there is a commercial first.)

NY Times asks: Are caregivers healthier? Jury’s still out

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.”

Trying something new

I have seen on other bloggers’ sites that November is National Blog Post Month – also known as NaBloPoMo. I have decided that I am going to try to achieve what this movement is all about: a blog post every day of the month. I think I will benefit from the therapeutic value of this kind of writing. It surely has the potential to result in more visits with Mom. I hope it will also encourage me to explore emotions that I don’t even know are there. Patrick has suggested that lately I have not given proper due to my emotions about Mom, and that is manifesting in unfortunate ways: mostly, a short fuse fueled by a lack of perspective.

So, we’ll see how it goes…

A face in the mirror

This morning, as I walked into the restroom at work, I saw what looked like Bonnie in a distant mirror. I was, of course, seeing myself. Really interesting. People have said I resemble her. I see my face as equal parts Mom and Dad most of the time. I just turned 48. Maybe now, at the age she was when I was in college, I can see the resemblance, because I don’t know that I fully appreciated her – and possibly didn’t really LOOK at her – until I was an adult. And only now, as a middle-aged adult, can I truly appreciate how exhausting life must have been for her as a single parent.

Weepy week

Mom was a source of cheer this past week. I’ve been blue about an imminent move at work – though I long to be an adult about it, I mostly have been full of dread, for a variety of reasons. Now that it is about to actually happen, I know it will be fine. And then, in a much worse turn of events, when we took our dog Spencer in to Ohio State’s Veterinary Medical Center to be evaluated for surgery to repair his torn ACL, the doctors discovered in pre-op X-rays that he probably has bone cancer. I had a good half-hour cry the night we learned this. So when I finally visited Mom the next day, it was great to find her in a sparkling good mood.

I had officially gone on the longest hiatus ever from visiting her – in the entire history of her illness. I last saw her on her birthday on June 6 and then visited her again on July 3, so I was closing in on a month. I might have made the effort a week earlier, but I knew my sister Laura was coming to Ohio for a visit and that meant I would be seeing Mom. And Laura sticks to her genius plan of getting Mom a Starbucks frappuccino, which seems to be very helpful with regard to Mom’s mood.

Laura and I sat at a table across from Mom at the nursing home and listened to her chatter on for almost an hour. She was so peppy and full of stories.

Before Mom started talking, we convinced her to sit - and then I slid her chair into place.

Before Mom started talking, we convinced her to sit – and then I slid her chair into place.

I can honestly say it had a healing effect on me to see her so cheerful, and to know that Laura was having a good experience. The last time Laura visited, Mom became grumpy and I believe it ended on a sour note. And that can stick with Laura, understandably. Even when we know it’s not personal, we want Mom to be nice to us, and want to be able to trust that Mom is as content as she can be.

We returned on July 4 with our cousin Barry. He has very fond memories of Mom, but he hasn’t seen her since she got sick. He lived in Arizona for all of his adult life, and recently returned to Ohio. This time, Mom was not as pleasant, at least at first. Mr. R was hovering around her, much to my and Laura’s chagrin. He didn’t say anything, but he just stuck around. His disease has progressed, so he doesn’t have the power he once had over Mom. She ignored him as we coaxed her to drink her frappuccino. Poor thing got ice cream headaches twice. She doesn’t understand what causes it, and because she likes the flavor so much, she drinks with abandon. When the brain freeze came on, she would put her palm against her head and fret. “I can’t wait,” she said at one point. Thankfully, they passed quickly. In the course of our conversation, she said, “There’s an attractive man.” And Barry decided that was a compliment. A little while later, she said, “Ugly,” with no context. We all got a chuckle out of that.

We decided to try to escape Mr. R’s watchful eye, and I held onto Mom’s hands and gently pulled her out of her chair. She cooperated. Sometimes I’m afraid to try that, but I see aides successfully bring her to a standing position all the time. But Mom was obviously feeling a little touchy. She blew a giant raspberry in my face and then growled and hissed at me. We all laughed, and I think she laughed, too. I said to Laura and Barry that it’s easier to absorb Mom’s anger when there are others around to help me realize it’s OK for her to behave like this in my direction. She didn’t seem to be holding onto the anger, really. Pretty soon, we all walked in circles for a bit before sitting again at a table to have a chat.

Barry, Mom and Laura at the Alz center.

Barry, Mom and Laura at the Alz center.

Eventually, it became clear that Mom had had enough. She wasn’t unkind. She said, “Well, let’s go.” She stood up and we walked a little bit again, but she eventually wandered back toward Mr. R, and we decided to let her be and not even say goodbye. Her attention was elsewhere, and in the only way she knows how, she had indicated she was ready for us to leave. But it was OK. No hurt feelings this time.

Follow

Get every new post delivered to your Inbox.

Join 40 other followers