Archive for the ‘All about me’ Category
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.
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.)
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.”
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…
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.
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.
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.
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.
I spent more than an hour with Mom a week ago, visiting her on the MLK holiday. I arrived about half an hour before lunch, thinking I would slip away when she started eating. It just didn’t quite work out that way. And it was fun to be with her, but also complicated at times.
She was pleasant enough when I arrived. We walked around the program area, holding hands most of the time. But she showed just tiny hints of distress from time to time. We got stuck in a hallway, looking out at the snowy courtyard. I talked about how cold it was, but that this outdoor area would be a nice place to walk around once the weather is warm again. “I want to go home,” she said. She really never says this. And because so much of what she says makes no sense, I didn’t take this seriously as a comment that actually meant she wanted to be somewhere else. “This is home,” I said, and we started walking again.
I think she might have been tired. And at the same time, having a restless day. Because I worried that she wasn’t having a good day, I started rubbing her back as we walked. She wriggled in the opposite direction and pushed my hand away. No big deal, I thought, and we just walked some more. I followed her lead from then on, holding hands only when she took mine. We found ourselves in that same hallway, looking at the courtyard again. This time, Mom said, “I love you.” And gave me a big smooch.
Since it was almost lunchtime, I coaxed Mom to settle into a seat at a table. I got a bib and wrapped it around her neck and then went looking for her tray in the cart. I hadn’t been there at mealtime in quite awhile, but in the past Mom’s tray was always on the first of two carts that arrive at noon. A nurse told me where to look, and I shifted a few trays, spilling some juice on one of them. Which made me flustered. I took it out and got a bib to mop up the spill. A volunteer who works lunches three times a week helped me clean it up. I sensed she was just a little irritated. I then pulled some trays out and put them on top of the cart in my continued pursuit of her tray. The volunteer told me it was confusing to her to have those trays put on top of the cart. I decided to give up.
In the meantime, Mom had gotten up and started walking around. I coaxed her back to her seat, again. The nurse sensed my frustration and gave me a tray for Mom, swapping with another resident who would receive Mom’s tray. I appreciated that, because I was beginning to feel like a bother, when I was trying to help. This is a common feeling I get when I try to help around the Alz center, even after 3 1/2 years.
The main dish was tuna-noodle casserole – something that the old Mom would never have eaten. But at this meal, Mom dug in, with her fingers. I sat back and watched her, and told her she was doing an excellent job. She ate every bite of that casserole, and also finished her steamed vegetables. She took a few bites of her bread. I offered her some pistachio ice cream, but she wasn’t particularly interested. She enjoyed a big swig of water. I cleaned her hands with her bib – she laughed when I did this; I wonder if it tickled. And then we set off for another walk.
We wandered close to a couch where Mr. Beard, her sometime boyfriend, was deeply asleep. She sat for a moment in a nearby chair, and then stood again. I encouraged her to find a place to lie down, thinking she could use a nap. Once she settled onto a couch, her knees bent and her head resting on the arm, I kissed her goodbye and said, “Sweet dreams.”
Today is my blogiversary. Four years. Oddly, that doesn’t seem like such a long time now that I am in my late 40s. But at the same time, it means the number of years of my life spent looking after Mom is adding up, and, considering how physically healthy she seems to be, will likely exceed 10. That’s plenty of time to be a caregiver, but it pales in comparison to some people I know – especially two older gentlemen I met in support group who have cared for wives with Alzheimer’s for 13 years and 16 years.
Four years would feel like a very long time if I had been miserable for the duration. Misery led me to begin the blog. It functioned as a journal for me to get difficult emotions off my chest. I began blogging and therapy at the same time, in fact, in January 2009, when I was at a very low point. Mom was in assisted living, so I knew she was safe. And that was an enormous relief. But she also needed me. For all sorts of things. I was her liaison to the rest of her shrinking world, it seemed – to cat food and litter, to clean underwear, to her neurology clinic appointments. Friends did visit her with regularity back then, and she had friends in assisted living. But from my perspective, Mom’s expressions of any kind of need always fell on me.
So while I struggled with both the workload and the conflicting emotions – I was sad to see her confused and losing her memory, but also wished the decline would accelerate so she would be unaware of her own problems – I also reflected through this blog on what it might be like for her. Seems to make sense, I’m sure. But I was so absorbed with my own experience that it took me some time to think of her as more than a needy patient who was becoming more childlike by the day. And in defense of caregivers, it’s pretty easy to become self-absorbed. Caregiving is difficult, and time-consuming, and frustrating, and heartbreaking, and often feels like a very lonely pursuit. But for Mom’s sake, and for my own, I’m so relieved that I was able to look at and consider the bigger life picture, thanks to the blog. I ended my own misery and was able to focus on what has become my No. 1 priority where Mom is concerned: her peace of mind.
This is not to say I consider myself the ideal caregiver. Not by a longshot. But I am not an angry or resentful caregiver, and that is significant progress. I didn’t want the job when Mom started showing signs of illness. I fixated on what I considered Mom’s misgivings as a mother as a way to justify my own lack of interest in taking care of her. Some time ago, though, without ceremony, I forgave Mom for the bad times in my childhood that I attributed to her, and I forgave myself for holding onto that anger for as long as I did. For some, it’s easy to stay stuck with the anger. I am so fortunate that blogging helped me get unstuck. It will be interesting to see what the next year has in store for me, and for Mom.
I have found myself many a time gently telling my peers in support group that it’s OK for us to care about ourselves. And that there should be no guilt about placing a loved one in a nursing home. If only I could take my own advice about guilt.
I don’t feel guilty about placing Mom in a nursing home. I really never have. It had its challenges, and I so hoped that she would adjust quickly (she did). But I didn’t think I was doing the wrong thing. It pains me to see so many caregivers regret even considering the idea of a nursing home. They seem to think it is such a betrayal. It often doesn’t help that they are emotionally and physically drained by the caregiving, making it hard to think clearly. I can say right now with full conviction that Patrick should make use of long-term care for me if the need arises. I don’t want him to ruin his health looking after me.
And yet, I still do feel lots of guilt, about Mom and all kinds of other things. Lately, I have been feeling guilty about not attending support group on a regular basis. In the summer, I had conflicts – the occasional round of golf being one of them. This fall, I have experienced an unusual busy spell that has persisted for about two months related to work, business travel and freelance jobs. I have gotten to the weekly meetings about five times since August, I’d estimate. After a long dry spell, I do recall that it was helpful to get back there at the end of the summer; I had missed the community spirit in those meetings.
And yet, why in the world would I feel guilty for not attending? It’s not as if I am so full of wisdom that I actually make a difference in anyone’s evening. And lots of people cycle in and out. I don’t do myself any good by regretting missing those meetings. I am missing one right this minute, in fact, because I was at work later than I expected to be.
As I was walking the dogs tonight, and wondering why I have been so cranky lately, it occurred to me: I think I feel guilty because I am not as tortured by Mom’s illness as I used to be. For now, at least, I am sustained by the goodness of my own life in a way that lessens my need for the support of my caregiver peers. And even though I don’t actually believe this to be the case, I can’t disregard the worry I have that I might be a bad person if I’m not in constant agony about Mom.
I am so lacking in agony and obsession, in fact, that the anniversary of Mom’s diagnosis went by without a single passing thought in my mind. She was diagnosed with Alzheimer’s on Nov. 3, 2005. Hence the reference to seven years in the title. My guilt actually predates that diagnosis, because once I learned she had Alzheimer’s, I was full of regret over all the arguments we had as the illness was first causing her distress – before any of us knew that. And when I looked after her when she was in assisted living, I was always convinced I wasn’t doing enough. Over the 3+ years she has lived in the Alz center, I have occasionally wondered if I didn’t visit often enough – and I am going through one of those phases now.
Lately, when people have asked how Mom is doing, I’ve had the same answer: She hasn’t changed much in a long time. Translation: She hasn’t lost significant function; she is holding steady. I’m pretty sure that is a factor here. I am used to her current state. Perhaps with the next change in her status, I’ll enter a new phase of grief. Is it so wrong that I accept and am OK with her current status?
I think I am the one I have to convince that it is OK to be OK.
A few weeks ago, The New York Times published an essay by a writer named Kelly Flynn titled “But Who Will Care For Me?” In it, Flynn described being childless (because of a health problem) in a culture that revolves around the family unit. Near the end, she wrote, “…now, as I help my parents navigate the trials and indignities of old age, I can’t help thinking, who will do this for me? Even if I can pay for top-notch care, it won’t come from a place of love and understanding of who I am and what is important to me.”
I bristled at this notion for a few reasons – one, having children is no guarantee that you have built-in caregivers, and two, I don’t think it’s fair to burden children with the expectation that they will spend their prime adult years looking after their parents.
I suppose I sound harsh. But from my perspective, making that assumption essentially devalues the life of the child. I’ve heard many times that Mom took care of me and now it’s my turn to take care of her. I really don’t think that’s a very helpful thing for anyone to say. It suggests that children are born with the expectation of payback. I find that concept offensive.
Many children very willingly care for their parents. I started the job reluctantly, and have adjusted, over a lot of time, to being my mom’s caregiver, and now consider it an honor to be with her at this time of her life. But how that plays out is not for anyone else to decide. Considering the massive stress associated with caregiving, why should we also live with the impression, sometimes imposed by others, that our lives have less worth than the lives of those who become sick? And of course this is not an indictment of the tragically unlucky who are stricken with disease. I just think that in deference to the ill, we who are already vulnerable are at risk of losing sight of what we once wanted for ourselves.
Patrick and I chose not to have children, so we may find ourselves stuck in our old age with limited choices for how we spend our final days. We have some planning to do. But if we had kids, I would be loath to stick them with caregiving duty without considering their wishes.
I wrote the following comment in response to the essay. A couple of people called me selfish because I chose not to have kids. I’ve always found that response questionable – just who is missing out on something because I didn’t reproduce? I guess it means fewer grandchildren for my parents and Patrick’s. But they’ve never said we are selfish. Interestingly, the few who responded to me don’t say I’m selfish for placing my mom in long-term care. And I’m glad not to be judged in this comment thread about that, but it’s also no one else’s business. Anyhow, some of what I wrote is what I try to convey sometimes to my peers in support group. We matter, too. And it’s OK to say so.
I am childless, by choice. And I have no regrets about the decision. I am also caregiver to my mother, who has Alzheimer’s disease. Early on, I decided she would live in institutions and not my home (or her apartment) when the need arose. She adjusted well, and she is now surrounded by the most caring nursing home staff I could ever imagine. I made that decision because my life matters, too. … I looked after her while she was in assisted living and am her advocate to this day. And I love her now more than I thought I ever could after a complicated childhood. But in my caregiving support group, I remind my peers that though this disease is tragic and taxing on caregivers, it does not mean our lives as we have known them have to end. In fact, our lives shouldn’t have any less value than anyone else’s. … I don’t know what will happen when I am old or if I become incapacitated, but if I had children, I would not want to saddle them with caring for me.