Archive for the ‘All about me’ Category
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.
July was not my favorite month. It was hot – the hottest on record in much of the country, the news said this week. And that power outage started the month off badly. I was so drained by that experience, probably because of the sleep disruption that it caused, that it took me awhile to just feel normal again. And as a result, it also took me awhile to get back to the Alz center to visit Mom. I wasn’t avoiding her. I just didn’t go until the evening of a Family Council meeting, when I popped in briefly to check on her. She was lying on a couch after dinner, sort of drowsy and content, with Mr. Beard nearby. I was satisfied that she was doing fine.
(The Family Council is not going great – we’ve met monthly since April, and forwarded a few requests to the administration. But attendance is low, and I’m not sure it’s going to last. I am invested in giving it a try, but I am not taking it personally if it fails.)
I finally got a good visit in with Mom on July 31. Mom was lying on a couch in the lobby, fast asleep, when I arrived after lunch. I pulled a chair over and sat facing her, trying not to wake her up. I enjoyed just sitting with her and watching her sleep. A few staff members chatted with me while I was sitting there. One aide came by numerous times as she wheeled residents out of the dining room and back to their rooms on the skilled nursing side of the building. “Are you Emily?” she asked, and I said yes. She said she uses my name to get Mom to do things. “Emily said it’s time for your shower.” “Emily wants you to be sure to eat all your dinner.” And it works. I was touched by that, but also impressed that she had figured out a way to win Mom over to whatever she wanted Mom to do, and minimized Mom’s objections in the process. So the name Emily still means something to Mom. But my physical presence may or may not be helpful. These days, I’m just not sure.
Mom eventually woke up and sat straight up. I had been patting her leg and she said, “No, no.” I wondered if that sensation made her think I was going to try to take her pants off of her – meaning a dreaded trip to the bathroom. She began to talk off and on, and I’d respond in a cheerful way. I admired her haircut and told her she looked good. And she did. She was in a good mood, refreshed by the rest. I noticed her fingernails were really long, so I gave them a quick trim, and she didn’t protest. We eventually stood up for a walk. We held hands and walked to the program area. The activity at this time was spending time outside in the courtyard. I walked with Mom to the door, and we looked outside. I couldn’t really tell if she was interested in joining the other residents out there. The door was locked, and the aide outside didn’t notice we were standing there. Mr. Beard had joined us, and before we could make a decision, Mom and Mr. Beard turned around and walked away. And that was OK, because I had to go back to work.
I’ve gone through periods before when I visit Mom less frequently, and I’m never sure what the cause might be unless it’s obvious, like when I travel for work in the fall or get sick. I felt like I was in a funk for most of July. Maybe I was hot and therefore tired. I was discouraged by numerous little joint and muscle pains that were piling up and interfering with my enthusiasm for exercise – always a bit of a challenge for me anyhow. I assume I wasn’t showing outward signs of depression, but I just didn’t feel so great. I looked to the beginning of August as a way to clear the July slate and start the summer fresh.
One thing new this summer was a change in the day of my weekly golf outing with a group of friends. For the past several years, we have met on Thursdays, but this year it was switched to Wednesday – which is also when the Alz center support group meets. I had skipped several support group meetings in a row for golf, and assumed that the golf itself served as a type of therapy, as both a physical activity and an enjoyable social event for me. Finally, on Aug. 1, I decided to check in with support group. I walked in, a tad late as is typical for me, and a few regulars perked up at my presence. “There she is,” one man said. And the daughter of Mom’s former roommate, the most steadfast group member of all, lifted her hands in a little cheer upon seeing me. And I think that greeting, from friends I would not know were it not for Mom’s illness, was what marked the beginning of the end of my funk. I had missed those people more than I realized. The group members, the doctor who leads it, the weekly meeting time, the familiar setting, discussing the shared burden of Alzheimer’s caregiving – these are all part of my life routine now. And I find comfort in that.
Ohio is part of this big storm damage-power outage-heat wave problem in the eastern half of the country. Our house lost power for five nights and six days. We threw away the contents of our refrigerator, freezer and a chest freezer downstairs. Our dogs panted each night away trying to cool off. We and our dogs stayed at a hotel one night and all four of us slept in our basement for two nights – which was surprisingly tolerable. The power came back on the night of the 4th of July and I was so energized and happy when that happened. And then last night, the power went off again. A circuit serving our house and 12 others in the neighborhood appears to have blown. And I have sort of gone off the deep end.
I think the forecast of 102 degrees today has a lot to do with that. I also had planned a full day of cleaning in preparation for my sister’s visit from California. I envision the house is coated by a layer of bacteria that settled in during the hot, breeze-less days. And there is much laundry to do. She booked a hotel earlier this week just in case, because my dad’s house has only partial power that doesn’t include air conditioning and it was hard to be hopeful about the power coming back on when we were in the midst of the outage. And as it turns out, there indeed is no comfortable family place for her to stay at the moment.
The realization that something was wrong began when I was listening to a voice mail from my stepmother last night on my way out of a movie at the neighborhood theater, which suffered through several nights of lost business during the power outage. She said our home phone wasn’t accepting calls. This concerned me. As we walked down our street, lights were on at most houses. And then there was our house, dark and quiet, the same as a few others on our side of the street. We walked around and could see the cluster of houses on our street and on the next street over that were dark. Neighbors were in their yards with flashlights. We made calls to the electric company and went to bed in our stifling bedroom. I tossed and turned for hours, listening to my poor 95-pound chocolate lab panting and panting, consumed with all the ways I hated the power company and wishing I could think of creative ways to express it.
During the first part of the outage, I tried to maintain perspective. At least I have my health, I would tell myself. I’m not unlucky like my mom is; I haven’t been stricken with a terrible disease. And I have access to an air conditioned office I could visit to get on the computer and charge our cell phones. There are many in my city and in other parts of the state who waited longer for their power to be turned on, or who still haven’t gotten their power – and we are nine days past the storm that downed trees and power lines. Some people in rural areas have no water because they need electricity to power their wells. Some people are in very poor health – so far, three people in Ohio who had chronic illnesses have been found dead in their homes. I am going to be fine. I am merely inconvenienced. But last night and so far today (it’s still early), I have been obsessed with how upset I am.
I so want to be a person who isn’t full of hate, who doesn’t complain, who can roll with the punches. Especially as I get older. I have tended to enjoy many aspects of aging because, though it isn’t apparent at this moment, I am more mellow than I used to be. A little less emotional and reactive. I am able to pause in the face of adversity and try to think before I talk. I’m still not great at any of this, but I do perceive myself as less explosive than I used to be. But I still have such a long way to go.
Not long ago, I posted about how I have learned during this experience with Mom that approaching the future with dread is no way to go through life. That good outcomes can follow the worst possible turn of events. So much of those lessons are lost on me right now, and I’m disappointed that I can’t seem to maintain that positive outlook. I will try to treat this trying time as a little case study once it is behind me, I think, so I can learn some more and hopefully figure out how to be the better person I want to be.