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 Both of her sources of income have withdrawn their November payments, so that takes care of that.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.
In my mind’s eye, Mom had a bad day Friday. She experienced more agitation than I have seen in quite awhile, since she became more withdrawn and immobile. I arrived just as an aide was changing her and repositioning her. I could hear her yelling from behind the closed door. Her lungs are strong, I thought to myself. I went in and sat, and as I had on Thursday, I cried a little. I thought and said to Mom, “I’m sorry this is happening to you. I’m sorry for all you’ve been through.” Though I have expressed multiple times that I want her suffering to end, that doesn’t take any of the sadness away. And that has taken me a little bit by surprise.
Mom was twitchy and her eyes were open. She vocalized a lot, and with little voice left, it sounded like groans of distress. I talked soothingly to her but I wondered if the repositioning had left her in pain. I asked the aide if she could have some medicine. He checked with the nurse, and said it was too soon – presumably for morphine. As time passed, and she tried to pull the oxygen tubes out of her nose repeatedly, I went to the nurse station to ask for Ativan. I stood there while two staff members kept their heads down, working. I imagine that when there are patients approaching all day long, this is a strategy to get work done. But it pissed me off. “May I ask you two a question?” I said. “I’d like for my mom to receive some Ativan. She’s obviously agitated.” “I’m in medical records,” one woman said. “I do speech therapy,” the other said. “But we want to help.” An aide arrived at that moment and said she would look for the nurse, and I thanked her.
I waited with Mom. I stepped out once to look down the hall, and the aide caught my eye. I waited some more. For those who have seen the movie Terms of Endearment, when Shirley MacLaine screams desperately at medical staff to give Debra Winger some pain medicine – well, I was about to go Shirley MacLaine on this place, with a staff I respect very much. I stepped out into the hall, and the nurse was walking toward me, mixing the medicine in a cup. Mom was so interested in the medicine that the nurse offered her some applesauce, and that seemed to make Mom happy. Even when someone has stopped eating, it’s OK to give her food if she wants it – I learned this from the hospice nurse later. Mom eventually relaxed, and I Ieft for a few hours.
When I returned in the mid-afternoon, she was agitated again, but had recently received morphine. So the nurse told me she expected Mom would settle down. We gave her some applesauce and fed her a high-calorie protein drink with a spoon. I did most of the feeding over time. Mom eventually didn’t open her mouth for the drink anymore. And then her agitation returned. She pulled at her sheets, flailed her arms, groaned nonstop. She pulled the oxygen tubes out of her nose countless times, and I returned them, to her dismay. I massaged her arms, hands, head and the side of her back that Ic could reach. The back rub provided brief relief, and she quieted. But soon she was restless again, and she occasionally cried out and grimaced. I couldn’t stand it. I was about to beg for more Ativan when the staff nurse and hospice nurse arrived. We agreed to start scheduling the Ativan at regular intervals to reduce the likelihood of more agitation. It’s discouraged if someone still walks, because it increases the risk for falls. That is not a concern here. Mom received morphine and Ativan and fell deeply asleep, finally. Her breathing was regular. Her heart rate had decreased to 91. I could finally leave.
I think Mom smiled when I said hello to her today. The nurse seemed to think so, too. I sat with her for about four hours. Her eyes were open at first, and I gently stroked her forehead and rubbed some oil into her hands. She has some involuntary muscle movement now, so it was hard to tell if any of this was soothing. A maintenance man came in, saying he had been instructed to look at her bed. She is on an air mattress because of the open wounds on her feet – to avoid any more of those skin problems. I hadn’t realized it, but the bed was completely deflated. The maintenance man jiggled the plug and the bed inflated immediately. Sometimes that’s all it is, he said. And within minutes, Mom was fast asleep. Poor thing was probably really uncomfortable not because of her disease, but because she was lying on a deflated mattress over a metal frame.
She then slept while I did a crossword puzzle and read a book. The Alz center nurse who has led her care for the past several weeks gave her meds – regular doses of morphine and drops to help clear secretions in her upper airway. Later, the hospice team arrived. An aide swabbed Mom’s mouth, which really needed a good cleaning. And the nurse checked her vitals, turned up the oxygen and decided, mutually with the staff nurse, not to change the dressing on Mom’s foot sores anymore. Changing the dressing just hurts her, and there is no point now in trying to heal those wounds. I was in favor of this decision, too. Mom cried out when the hospice aide repositioned her on the bed. There is pain there even with the morphine. By the time they left, though, she was resting comfortably again.
Her pulse is very fast, 143 beats per minute, and she is showing some signs of labored breathing. No gasps, no pauses. But a heart can take only so much racing, and the lungs can circulate oxygen under compromised conditions for only so long. She ate a full meal Sunday and refused food yesterday. There was no attempt to feed her today. I talked to her, told her a few times that Laura and Jeff are on their way. I am not keeping a 24-hour vigil at this point, and am not sure what we’ll do when we’re all together. A friend who had both parents in hospice at the same time (an unbelievable thing to happen to an only child) said she was advised to have a visitation schedule and not to stay 24 hours. That way, the parents could time their death when she was there or when she was not, depending on their preference. I have heard a lot about a dying person’s preferences in the past few days. There seems to be a strong belief among those who work with the dying that we have some control over this last act. I am not going to try to guess what Mom will choose.
Patrick and I made good time on our trip back home. It was a beautiful day for a long drive. My mood has been stable except for when Patrick’s mother called this morning to wish us a safe trip, or when I read kind and supportive comments on Facebook, this blog, in email or in texts. “I know it’s a rough time for you,” my mother-in-law said when she called. We were both choking up. She has been through this – with her husband, which I imagine is exponentially more painful. So many people have been through this with parents, too. Of course I will miss Mom and this is a rough time. But I want this to be over for her because now what I see when I look at her is suffering. And I have missed her for a long time. When the hospice social worker asked me during the admission process how I expected I would feel when Mom dies, I said that I worried I would never remember what my relationship was like with her before she got sick. My brother and sister are flying in Friday night. I imagine we’ll share stories, and they will help me remember.
Mom improved a little bit today. She was more alert and even tried to have a laugh with a nurse. She was not interested in eating, but she did enjoy receiving sips of juice. The fever she had yesterday, which seemed like a bad sign, was gone today. But a new wound opened on her other, previously healthy, foot. When Patrick and I entered her room, an aide tried to prop Mom up a little bit in bed so she could look at us. I was surprised that she did this, because I just wanted Mom to be able to rest and let us look at her. But she was trying to be helpful. “So she can see you,” she said.
Mom is receiving steady doses of morphine and she is typically asleep by 7:45 p.m., which was about the time we arrived. The upper part of her bed is elevated to keep her somewhat upright, presumably to reduce the complications of aspiration. She is producing a gurgling sound in her upper airway, which the nurse described as a signal that the dying process has begun. She had oxygen tubes in her nose – this is strictly for comfort, not to prolong life. She moved her mouth from time to time as if she were dreaming about eating. She had some involuntary spasms, which I have noticed for awhile. She didn’t look quite comfortable enough for my taste. But I’m hopeful that anything that looks like distress to me is something her brain doesn’t register. We held her hand and she seemed to respond to that touch, at least a little bit. The nurse said she does still seem to be trying to communicate. At one point, she briefly grimaced. I hope we didn’t hurt her with all of our touching.
Tomorrow I’ll be back to watch her during the daylight hours, and to quiz the hospice social worker, who said she plans to look in on Mom. Even if the dying process is in progress, which appears to be the case, I get the feeling it is impossible to predict how long it will take.
My 50th birthday is Thursday, Oct. 22. And, according to a prediction by a nurse at the Alz center, Mom could die that day. Or even sooner. Patrick and I long ago planned a week in Bald Head Island, NC, a favorite spot of ours, for a celebration of this birthday. We went to London for his 50th birthday last winter to see a series of soccer matches. Bald Head Island is more my speed: not much to do, no cars, maritime forest, natural beauty at every turn, kind people, a familiar setting (this is our 11th or 12th visit since 2005). We arrived Sunday evening, and we are leaving tomorrow, Wednesday morning, three days earlier than planned.
The last time I saw Mom, she seemed to be doing OK. Compromised physically, but able to eat and even say a few words. The week leading up to the vacation was typically hectic at work, and I wasn’t able to see Mom before I left. But I knew I would be home on Sunday, Oct. 25, and thought I could get back on schedule to feed her lunch that day.
I got a call from a hospice nurse on the drive to North Carolina on Sunday. Mom had appeared to be in some respiratory distress, and had been agitated, so she was given anti-anxiety meds and had calmed down. It appeared she might be having some trouble swallowing, which is a classic sign of end-stage Alzheimer’s. My interpretation was that that would be something to watch for.
On Monday, my main nurse contact at the Alz center called to update me, but I missed her call. A different nurse – a manager – told me when I called back that the hospice company had recommended withdrawing food because Mom was at risk for choking or aspirating. But he said that was against the Alz center policy – food is given as long as it can provide comfort. It being close to lunchtime, I assumed that meant that Mom would be fed.
When I finally connected with the nurse I am closest to, she told me she didn’t think Mom’s lungs were a problem, but that some gurgling and wheezing sounds were coming from her upper airway – also an indication of the potential for problems swallowing. This nurse gave Mom some drops to treat the dryness in her throat, and she said Mom seemed very interested in having something in her mouth – as if she wanted some food or drink. She agreed that Mom should receive food as long as she was alert and interested, because it was a source of comfort and pleasure for patients who don’t have much else to look forward to.
The suggestion that Mom would not be fed – while she was still alert, breathing fairly normally and showing enough strength to repeatedly pull an oxygen mask off of her face – surprised and angered me, as the hospice nurse hadn’t said any such thing to me on the phone on Sunday. After talking to my nurse friend, I called the hospice social worker to complain, and she said she’d look into it and assumed there might have been a misunderstanding. I called back to the Alz center at around 2 to discover Mom had not been given a lunch. I insisted that someone feed her a goddamn meal, and to puree her food if necessary to prevent choking. An aide got right to it.
When nobody called me before or during a long walk around the island today, I felt some relief that no news about Mom was good news. And then my main nurse contact called me at 3 in the afternoon, the end of her shift. Mom had changed significantly in one day. She ate yesterday, but could not swallow today. She had a persistent fever that didn’t respond to Tylenol – a suggestion that the part of her brain that regulates body temperature might have been damaged by the disease. The rapid progression suggested to her that it could be a matter of a day or two until Mom dies – though one never really knows for sure. When I said I would head back to Columbus, she said, “Don’t rush. Don’t get into an accident. If something happens before you get here, just know you have been a good daughter to Bonnie.”
So Patrick and I will hit the road tomorrow. My brother and my sister and her family are looking into flight possibilities. Mom is being kept comfortable, mostly with morphine. Selfishly, I’d like one more visit with her before she dies. Just to squeeze her hand, brush her hair from her face and tell her goodbye. But for her sake, the sooner she is at rest, the better. This life of hers is not worth living, and hasn’t been for months. The nurse even said that if Mom dies before I can get there, it could be the way Mom wanted it – to spare her children the agony of a death watch. If that’s the case, I’m comforted knowing that the sights, smells, sounds and touches of those around her are very familiar. Before she leaves this earth, Mom will be surrounded by the Alz center staff members I so admire – and the closest thing to family that Mom has known for more than six years.