Category Archives: Aging & dementia

Two years is a long goodbye

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I was up early this morning, checked my calendar, and realized it is the second anniversary of my dad’s death.

I took a few minutes to look back at what I wrote at the time. Two entries strike me as capturing the feelings I had at the time.

I wrote about what happened after getting the call from the nursing home that I should get there ASAP, and I was stuck in Kaaawa without the car and, worse, I missed the bus.

On Friday morning, when my father’s nursing home called and advised that we come as soon as possible, I was at home in Kaaawa without a car. After dressing and walking quickly down to the bus stop on Kamehameha Highway near the post office, I was a minute too late. The 11:01 a.m. bus slid through Kaaawa and headed off towards Kaneohe while I was still a block away. It was a short block, but at that moment it seemed like the longest block in the world.

I was frantic. For nearly two years, we’ve known he could die at any time, but he didn’t. Then, when the day actually arrives, I wasn’t ready, and I wanted to kick myself for being caught unprepared.

Then, after he passed away, there was a return to pick up the things he had at the end.

My sister and I returned to my father’s nursing home later in the day of his death. Their staff had already taken down the photos of each of our cats that had been on the bulletin board, and put magazines and books, stacked up over the past two years, into a box on the floor under the window. We stuffed most of his clothes into clean garbage bags, and decided to donate them to the facility, where they will be reused by other men. His shoes, some with lots more wear in them, would go to Goodwill.

We carried out a small chest of drawers Bonnie had put together for him, and his walker, two photographs taken on May Day 2009, and just a few odds and ends. The rest stayed behind as we walked, for the last time, back down the hall to the nursing station, past the common room that his mind often transformed into the 1940’s Commercial Club on Bethel Street, and to the elevator, down to the small lobby, and into the cramped parking lot.

There just wasn’t much left.

In any case, that was then.

For the record, in the two years that have passed, I think my dad only appeared in two of my dreams. Both times he was angry. I’m not sure why my dream would construct him that way. Someday, perhaps, it will become clear to me.

A morning with my mother

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I’m sitting with my mom for several hours this morning after a very early drive to Kahala from Kaaawa.

We scheduled this so my sister could attend a meeting at her church in Aina Haina. It’s the same church we both attended as kids. Bonnie became active again as soon as she moved back several years ago to help care for our parents. I haven’t been there for decades except an occasional visit to the thrift shop with Meda.

In any case, this is not pleasant duty today. My mom has been nauseous, complaining of pain in her neck, and zoned on some combination of meds that I’m not fully up to speed on.

We are in new territory. She was approved for hospice care a week ago. It means she can stay at home, and there will be more support for her as well as for my sister, who is on the front line in daily care. This week has been filled with the initial round of nurses and medical evaluations, the first visit with the social worker, a new round of medications, and lessons in the hospice routines and case management.

Her condition in the past week seems to have remained in a narrow range. On a good day, she can get from her bed into the living room on her own steam with the aid of a walker. It takes a while, and might be touch and go, but she can do it. Then she occupies her regular chair and goes through the motions of looking at the day’s mail, or digs into one of the stacks of miscellaneous papers accumulating at her feet. I don’t know if she is actually processing the information. I can only hope for the best.

She eats, although not enough to fuel a 10 pound cat. A bit of fruit, cut up and waiting in a dish. A couple of spoonfuls of poi. Soup or broth. Juice. A partial cup of coffee in the morning. Part of an english muffin. On a good day, she drinks enough fluid to ward off a second bout of dehydration like the one that put her in the emergency room several weeks ago.

Today is not a good day.

She is sitting up in a spot on the sofa in the living room. A glass half filled with water sits near her right hand. She’s wearing a “world’s best mother” nightgown under a worn, deep blue fleece jacket, a dark green blanket across her lap, well wrapped despite the warm day. She’s here, but her mind is obviously floating in a very different space. This is something new, and I would guess it’s purely chemical. She’s switched several medicines, and some adjustments obviously have to be made.

In the short time I’ve been here this morning, she has already had a couple of brief conversations with herself regarding some obscure genealogical reference or family link. “Cousin or nephew?” I hear her ask.

Meda thought she heard the word “obituary.”

I walked over to in front of my mom, who looked up, but seemed to stare past or through me without seeing.

She then seemed to doze off while sitting up, then appeared to be dreaming, or living out a dream. Once she looked up, eyes opened, and suddenly launched into a slightly garbled rendition of Hawaii Pono’i, struggling to find the words and string them into something close to the right order. Then the lights went off again, her eyes closed. In a minute, she rubbed her neck, then nodded off again.

Later, she appeared to be acting out eating something. Her hand went to her lap, feeling along an imaginary table, her fingers curled to scoop something up, made the slow trip to her mouth, and then she chewed, slowly. It was like watching kids acting out a tea party. I waited, then asked gently if she would like a spoon of poi. It startled her. She shook her head, “no.” Dream trumps reality.

Parts of her body hurt. Arthritis in her shoulder, the hip that was replaced when she was a spry 80-year old. I know there are other sources of pain. She rubs her neck repeatedly, grimacing as she does. I tried several minutes of massage, repeated at intervals. It doesn’t seem to offer any relief. My instructions were to give her a pill for pain about now, but in light of her current mental confusion, possibly a reaction to other meds, I’m holding off.

Then she appeared to decide to move. The process of deciding took time, then she reached out, fumbling as she tried to get ahold of the walker parked in front of her. I offered to bring the wheelchair. She shook off that idea, got one hand on the walker’s grip, then the other.

When lucid, she has repeated said that she doesn’t want to be treated as an invalid. Today she isn’t lucid, but clings tenaciously to that idea. She wants to get around on her own, at least nominally.

Getting upright is difficult. Today she could not have done it on her own. But the two of us got her vertical, and, very slowly, she released the brakes and began to shuffle in the general direction of her bedroom. I stood close by, nudging the walker past obstacles, prepared to react if she fell, not sure whether she could manage this physical feat. She managed. First the eight or nine feet to the door into the hall, then a shuffling turn towards the right. Bedroom now straight ahead. She faltered once, staggering backwards, almost falling. I caught her and got her upright again. Then she finished the job, getting the final ten feet, remembering to lock the brakes, turning and pivoting next to the bed, then sitting on its leading edge, finally shifting herself towards the pillows and sort of falling over into sleeping position, legs following.

She has powered through many of the crises of aging, but at 98, life is catching up with her. I doubt that she’ll be able to go into her yard again, or water the plants that she has cared for over the 70 years living in this house. She climbed into the larger of the two mango trees well into her 80s, but now the few steps down from the house to the lanai are probably an insurmountable barrier.

She has outlived all of her friends, experienced death many times over, and prepared detailed directives on what to do, and not do, when it is her turn. She has prepared for this quite deliberately.

It doesn’t make this long moment any easier.

Getting old is hard work

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Tuesday started with a walk on the beach in Kaaawa, the long drive into town, and a calendar that included a couple of meetings, several phone calls to make, and a couple of issues to research.

Then I got the message.

Text msg

It was from my sister, Bonnie, who has been living with my mother, making it possible for her to still be living in the old Kahala home where we grew up and where she has been for some 70 years.

When your mother is 98 years old, mention of an “ER visit” triggers a rush of fear anxiety. In just a few seconds, your mind can race through a mental maze with many dead end “what if’s” feeding hypothetical scenarios without good endings. And there was an edge of guilt because I had been busy when I received Bonnie’s earlier telephone call, and hadn’t yet listened to the message or called her back.

My mom has not been feeling well for a couple of weeks. She’s been to her doctor, had one light round of tests, still says she feels “lousy.” Bonnie has been keeping the doctor’s office up to date, and he finally advised an emergency room trip and additional tests. We knew she she really felt sick because she didn’t complain about being told to go to the ER. So there we were.

My mother was able to get out the front door of her house and down several stairs with Bonnie’s help, then into a wheel chair, and into the car. I met them at the Straub emergency room. The folks at the admissions desk warned things were busy and we would likely be waiting for several hours. They were right.

We ended up being there in the emergency room for a bit over five hours. There was good news and bad news. The good news was that her immediate problem seems to have been dehydration after the long stretch of not feeling well, and that apparently triggered other related problems. But after a pill for her arthritis pain, a bit of oxygen, a thorough check-up, chest X-ray, and an infusion of fluids, she was cleared to go home.

The bad news is that she’s more fragile than I realized. My mother has always been a very strong-willed woman, self-reliant, in charge. Yesterday, after hours waiting in a Stryker hospital bed tucked behind a curtain on the side of the emergency room, medical monitors beeping, various nurses and doctors coming and going, poking and prodding, she was reduced to tears. She was uncomfortable, worn body parts were hurting, but I think these were also tears of fear and frustration. There was little she could do. She has trouble hearing, and likely only caught a fraction of what was being said to or about her. Power and control was now in the hands of others, medical professionals, family members. And perhaps in that lonely moment, dressed in a hospital gown and wrapped in a generic hospital blanket, surrounded by a confusing blur of activity, she realized this is the new normal going forward. Something to cry about, for sure.

One year and counting

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Today marks one year since my dad died, just two weeks short of his 97th birthday. He spent nearly two years in a Honolulu nursing home in a long, slow decline marked by Alzheimer’s, dementia, and “failure to thrive,” which I think was simply the weight of all those years.

During the year, his sister and his brother Tom’s widow both passed away. They were the last of their generation, as my sister noted.

It rained this morning while I was writing. My Hawaiian side sees it as a sign, a blessing of sorts. Perhaps.

It is only in retrospect that I realize how difficult it was to blog through my dad’s final two years, a task that required attending to details and feelings. During those two long years, I also spent a lot of time going through his collection of papers and photographs, trying to lift out details of his life that I could ask him about, hoping to trigger bits of his remaining memory that might seed conversation.

Since he died, I let all of that go. Gone is gone. He hasn’t appeared in my dreams, which I think is a product of my firmly closing that door in my mind, for now at least. I realize that I haven’t touched any of those boxes of his stuff since he’s been gone. That entire task was suspended, pending…pending what? I don’t know.

Perhaps now I’m ready to look back at the positive remnants. In addition to those as-yet still not sorted mementos, I’ve got a few moments of video, some voice recordings done with my iPhone while visiting at the nursing home, and my written observations along the way. Hopefully, with the passage of time, I’ll be able to keep those segregated from my own vivid memory of his agonizing last days.

We’ll see.