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.
Laura, Jeff and I felt good about the service we planned for Mom. After it was over, people told us they wished they had known her. We considered that a big compliment. We kept it simple. Patrick opened with his memories of Mom as someone who was simultaneously strong and vulnerable, and whose heaven would be a place at the Algonquin Round Table, with people acting a bit inappropriate and cigarette smoke swirling in the air.
I read excerpts of three posts from this blog. To select them, I searched for the words joy, dancing and laugh. The first described difficulties Mom had early in her illness with the phone – and her ability to laugh at herself despite the frustration. The second was a description of a birthday visit with Mom in 2012, when she turned 75. The third was about a life lesson I learned from her:
“Through her, I’ve learned that even the most damaged people can still find pleasure in life – often from the simplest things. What many consider to be a bleak existence can be marked by endless laughter, dancing and singing, and consistent and comforting social interaction. When something bad happens, it doesn’t have to define the rest of one’s life. Something so bad, and so sad, has happened to Mom, and to our family and her friends. But we carry on, we learn to live with it, we make the best of it.”
Laura spoke about Mom’s unconditional acceptance of who we were. No pressure, no disappointment if we made mistakes or, in Laura’s case, didn’t make a cheerleading team. Or, rather, no disappointment for herself, but real concern for us when we faced disappointments in our young and adult lives. Laura read a poem that she wrote about Mom, which I published in this blog years ago.
Jeff talked about how music had been important in our household, especially to him – music is his profession. He played Mozart on the funeral home’s keyboard, and completed the service by leading a sing-along of “If I had a hammer.” The Peter, Paul and Mary version of that song had come up on his iPod while we were with Mom, and it struck us as a good reflection of her interest in social justice.
Julia and Lily, Mom’s granddaughters, each shared how they remembered Grandma. Lily had observed as a little girl that Mom had a tendency to wear striped shirts – and after that, Mom wore stripes for every airport arrival so the girls could find her, and to poke fun at herself. Julia recalled a moment of silence with Mom in the back seat of a car during her “teen angst” years – not an awkward silence, but a quiet show of support from a grandma concerned about Julia’s bad mood.
Many old friends of Mom’s and of ours visited to express their sympathies at the calling hours. And we had a nice turnout for the service – we really didn’t know what to expect in the way of numbers. We followed the funeral home formality with a party at a local cinema and drafthouse, which attracted additional friends as well as those who had made an entire day of celebrating Mom.
If you’re interested in seeing more images of Mom, the funeral home posted a video slideshow on its website.
I am way behind in thanking friends, family and readers for their kindness, and I have been touched by people who have asked what would happen to the blog. I will keep writing this blog for as long as it makes sense. There is much more to remember.
A slightly shorter version of this will run in the Columbus Dispatch Thursday, Oct. 29. Laura, Jeff and I worked on this together. The photo is from Laura’s wedding in 1988. Beautiful, isn’t she?
Bonnie Ann Aitken Caldwell, 78, of Columbus, died Oct. 27 at Columbus Alzheimer Care Center. She was born on June 6, 1937, to Howard and Mavis Aitken in Springfield, Ohio. Bonnie played sports at Northeastern High School and was valedictorian of the class of 1955. She earned a bachelor’s degree in social work from Ohio State University, and held a number of professional positions in that field. Later, she put her accounting talents to use in the circulation department at the Columbus Citizen-Journal and Dispatch. She worked in the College of Education and for the Friends of the Libraries at Ohio State and completed her career in the Registrar’s Office, retiring in 1997. In her personal life, Bonnie maintained a close circle of friends throughout adulthood, enjoying intellectual pursuits and social gatherings. A lifelong learner, she had a great appreciation for the arts. She took frequent trips to New York City and traveled to visit her children, and especially enjoyed seeing her son’s musical performances. She loved a good book and a good laugh. She was an excellent and playful grandmother to Julia and Lily Edwards, who survive her, and offered a thoughtful ear and parenting insights to her older daughter. She is predeceased by her parents and brother-in-law, Gary Lough. She is also preceded in death by her beloved cat Petunia, and loved all of her furry grandchildren, too. Bonnie is also survived by children Laura Caldwell (Marc Edwards), Jeffrey Caldwell and Emily Caldwell (Patrick Keenist); a sister, Nancy Lough; and four nephews: Scott, Barry, Garth and Chad Lough, and their families. On Nov. 3, 2005, she was diagnosed with Alzheimer’s disease. For most of the following 10 years, and especially the last six at Columbus Alzheimer Care Center, she was funny, affectionate and social – an excellent subject for her younger daughter’s caregiving blog. Bonnie had two boyfriends and told stories in her own special language. Even with little strength, she could give her ear a thorough scratch and share smiles. Donations may be made in Bonnie’s memory to the Alzheimer’s Association Central Ohio Chapter or Friends of the Libraries at Ohio State. The family thanks the dedicated staff of Columbus Alzheimer Care Center. Thanks also to Gentiva Hospice. Calling hours are 11 a.m. to 12:45 p.m. Saturday, Oct. 31, at Southwick-Good & Fortkamp Funeral Chapel, 3100 N. High St., with a brief memorial service at 1 p.m. A celebration of Bonnie’s life will follow from 2-4 p.m. at Studio 35 Cinema & Drafthouse, 3055 Indianola Ave.
June 6, 1937 – Oct. 27, 2015
“It’s the end of an era,” my brother said over the weekend.
“She never wanted to leave a party,” my sister said.
“We should not be surprised she’s doing it her way,” the activities director said.
“She’s my favorite dancer,” an activities staffer said with a big smile.
“She’s holding on for something,” a restorative aide said.
“You’re on this journey, and you’re the only one who can finish it,” a hospice nurse said.
“It was our privilege to take care of her,” nurse Bobbi said, with tears in her eyes.
“Today makes sense: One last Tuesday night gathering at dinnertime for the three of us,” Patrick said.
“I love you, and I know you loved me.” The first of my many goodbyes.
At this moment, Mom is still breathing. But the breaths are “not life-sustaining,” according to the nurse who called this morning. I would have said the same things about her breaths yesterday, or even Sunday night. Her relative physical health seems to be sustaining her still, long after her brain turned against her.
Mozart is blaring from my phone. Jeff left his iPod here when he and Laura flew home yesterday, but its battery ran out overnight and I forgot to bring a charger.
The three of us got a lot done while they were here. More importantly, the prolonged time together strengthened our bond. In Mom’s room, we laughed a lot, selected photos for her service and shared memories, but also lamented her illness and had varying and unpredictable emotional responses to her imminent death. Lots of 3-way hugs, and a renewed sense of our love for each other. Agreements to leave Mom’s side and then an agreement to stick together when I had an unexpected moment of crisis late Sunday. I believed she would die that night, partly based on how she looked and under the influence of a hospice nurse who suspected she couldn’t survive the night. (No one else has spoken so definitively about Mom.) “I feel like I have to see it through,” I said. “It’s my job.” Forty-five minutes later, we left. We needed rest for the day ahead, our only chance to work on funeral arrangements. Monday morning, she was still here. I got a call last evening that she had made a sudden transition. Patrick and I raced back here. An hour later, she had not changed. We returned home. And here she still is this morning, surprising her entire care team.
Those who know me and/or read this blog know I am not a believer in total sacrifice of my own health and life as a caregiver for Mom. The dying process has challenged me somewhat, in that I did expect I would want to be with her at the moment of her death. There is the question of whether she would want any of her kids here when she died that influenced my ease in leaving her from time to time. There is the pain of looking at her in this state that makes me need to leave sometimes. And my own health concerns me. My resting heart rate had been near or above 100 since Saturday, causing me to feel like I am having the longest hot flash ever recorded. When Mom was in distress and I could speak in a comforting way to her, I wanted to be here. But she has been unresponsive since midday Sunday. We talked to her and kept music in her ear, not knowing if anything got through. I am here today because concentrating on anything else is impossible. I feel stress about missing work, but I don’t trust my ability to perform well while waiting for the call that my mother died.
Nurses and I have recommended to her today that she let go. I just blasted Handel’s Messiah when it came on, inviting her to go out to that music that she loved so. It may seem inappropriate to wish strongly for a mother’s death. But if anyone has earned the peace of eternal rest, it is Bonnie Caldwell.
I played canned classical music from my phone until Jeff arrived with an iPod loaded with Mom’s favorites: the Magic Flute, Der Rosenkavalier, Barber of Seville, Ravel piano concerto and Resphigi Ancient Airs and Dances. Today, Peter, Paul and Mary. Laura and I are singing along. Patrick’s here, too.