Category Archives: Aging & dementia

Thinking about “death with dignity”

7 Replies

Another morning with no overnight telephone call from the hospice house in the back of Palolo Valley where my mother has been for the past week. It means she’s still alive. Barely.

On Friday, I was sure she would not survive the night. On Saturday, I was sure she would certainly not survive another night. Yesterday, as I prepared to leave, again for the last time, I just looked at my sister, Bonnie, and said with a shrug, “she may surprise us again.” And she has.

I want to think that my mother is aware, at some deep level, when I’m there at her bedside. I have short, one-sided conversations with her, trying to convey a sense of calm, letting her know that any past issues have been resolved and that she can go any time she chooses. It’s all okay now, is my message.

Perhaps, after nearly 99 years, there is just a lot of life to process before being ready to move on. Perhaps your life doesn’t just flash before your eyes, but is recounted at a slower pace as you prepare to walk that final path. Maybe you can choose to watch the life story to the end, or walk through the door at intermission. I don’t know. It’s all part of the mystery.

What is clear is that dying is hard work, and she’s been working at it for more than a week. I’m exhausted, emotionally and physically, just from watching. She must be as well.

In a recent comment, one person asked: ” Without sounding insensitive, am wondering if your experience has affected your views on end of life choices, including assisted suicide.”

Short answer, not really. It has strengthened my general support for Death with Dignity legislation. But it also raises the question of when and how a person’s wish to die with dignity would be fulfilled.

In my mother’s case, even after her personal physician and a hospice doctor said she was not expected to live more than six months, she assured us that she was not dying, despite the hospice diagnosis. And as long as she wasn’t dying, she would not have taken advantage of a system of physician-assisted death, although I think she would have wanted to have that option. Then her health quickly deteriorated in the past couple of weeks. She now realized she is dying and even said at least once she had already died, but she was now in a mental fog and would not have been capable of exercising her right to die with dignity. Would the responsibility of fulfilling her wish fall on us? If she had gotten an end-of-life prescription, would it have been our job to administer it?

This is only the second time I’ve gone through this death experience with someone very close. My dad died just a couple of years ago, and now my mom is near her end. But we’ve gone through it with a number of cats who we also loved. Cats have a way of telling you when they are ready. They stop eating, and stop caring for themselves. If allowed, they would probably find a place to hide in the hard and just wait to die. But we intervene at that point and seek the help of our veterinarian to make the passing quick and painless. It’s always very hard on us, the survivors. But much easier on the one who is dying.

Given my mother’s condition for the past ten days, quick and painless would have been a blessing, and could have avoided the lang, drawn-out, difficult work of dying.

On that final path

7 Replies

Helen's handsThere are many descriptions of the days or hours at the end of this life. Clearly, my mom is right there towards the end of this path. She hasn’t had anything to eat or drink for over a week, except for a small wet sponge occasionally wiped on her lips and in her mouth, and perhaps a teaspoon of ice cream or apple sauce. Nothing in the past several days. Most of the time, she is comfortable, although not really in this world any more. If she seems to be in pain, there are pain meds close at hand.

Yesterday morning, according to hospice staff, she spoke one word several times: “Mom.” Her mother? Someone else? We have no way of knowing.

Hallucination, they said. Perhaps. But, whether a hallucination or something else, seeing those you have loved is another common part of this final voyage.

We’re trying to stand by, but have not attempted a full-time vigil at her bedside.

We’re told the presence of family or friends can be a comfort to the person who is dying, but can also be a burden. Imagine being very sick, but knowing someone was there watching you constantly. Would that make you feel better or worse?

I’m sure my mother appreciates our presence but wants/needs her own space. So we stand back a bit, giving her ample space to go whenever she chooses, but we are checking in and spending time with her as long as she is not yet ready to let go.

What else can you do?

My sister and I are in awe of the staff of Islands Hospice. They have truly made her last days more comfortable, both for her and for those of us who are trying to accompany her to the end.

And how I wish our mother could have experienced the sunrise on the beach in Kaaawa this morning. It was one of those moments that makes life worth living.

Saturday morning

Mother briefly finds her voice

10 Replies

I spent time at my mother’s bedside mid-day yesterday. One of our cousins had visited earlier and my mom was, as they say, unresponsive. She slept, and when her eyes opened, she didn’t connect. On the positive side, she’s comfortable, clean, and is periodically offered tiny bits of apple sauce and water, although she has mostly been refusing them. Yesterday I bought some poi, and my sister, Bonnie, took it up late in the day.

In hospice, the patient decides. Whether to eat, drink, to prolong life or not. Their choice. These are the few choices one can still make at this stage of life. It’s hard for us, those who can only wait and watch. But it is what it is.

After I had been there for a while, my mom opened her eyes, but they had that vague, cloudy, blank look. She barely responded, if at all, when I held her hand and told her I was there. She drifted in and out, closing her eyes, sleeping, then drifting back, eyes opening.

According to the hospice staff, she hadn’t spoken since arriving there early Monday morning. This was Wednesday.

So I was startled when she suddenly became agitated. Her eyes cleared as she looked across the room, then she unsteadily raised a hand, pointed.

She spoke, the words slowly bursting into the room. She struggled to get them out.

“Wait!”

“Don’t go!”

“Come back!”

Then she sort of relaxed back into the pillows, but her eyes were still bright and clear.

Her right arm was still raised, and this time she pointed to the foot of the bed.

Her voice was pretty clear, stronger than I could possibly have expected.

There was wonder, and loss, perhaps disappointment.

“He was right there,” she said, pointing to the foot of the bed. “Right there.”

She was speaking to herself, but I tried to gently ask who “he” was. It was enough to break up the moment.

She faded, eyes slowly closing, energy spent.

In the weeks before my father died, he referred several times to the people that were waiting for him. One day he asked me who was in the hall waiting to see him. Another time he said they were waiting in the next room.

“I really should go,” he told me, his tone of voice serious.

I don’t know what, or perhaps who, my mother saw. I don’t know if it was all part of a dream, or a glimpse somewhere into a world awaiting her arrival.

Believe not without evidences. But are these hallucinations or evidences? I suppose we’ll never know.

Acceptance of the end of life

13 Replies

Someone else is about to become the oldest living graduate of Kamehameha Schools, as my mother–Class of 1931–prepares to relinquish her hold on the informal title.

She’s getting the best of care. She is resting more comfortably than any time in recent months. But she is no longer responding to the world. She apparently is no longer hungry or thirsty. She had feared death, but now appears to accept it. She seems relaxed. She is ready.

Here’s how quickly things can change. Not long ago, she announced that Harry & David was having a sale, and so she ordered a two boxes of pears. She remembered that we were going to Maui for a few days and wanted to make sure that we would be back when the pears arrived. That was then. The pears were just delivered to her home in Kahala, but she won’t be back to enjoy them. It’s all matter of timing.

There are many lessons here. The Big One–enjoy it all while you can. Seriously.

In the meantime, I can say this. I am my mother’s son.

She taught me the basics of getting around the kitchen and making simple breakfast treats. Pancakes, muffins, popovers. But then she added the big lesson. When I pestered her for more information about the next level of cooking skills, she said simply, “If you can read, you can cook.”

Aha!

Look it up, read about and learn from the experience of others, but find your own way.

It applied to cooking, and then to the rest of life.

When I had those typical kid questions–why is the sky blue, where does lightning come from, and so on–she pointed to the set of World Book Encyclopedias that probably took up six-months of her discretionary spending. The message was the same. If you can read, you’ll find the answers on your own.

Meda and I have jokingly referred to my mother as “the woman who knows everything.” Hawaii history, families, events, flowers, cooking, genealogy, plus the common sense gained from the experiences of a very long life.

Our world is going to be different without her.