Category Archives: Aging & dementia

On that final path

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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

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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

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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.

A long wait for the ambulance

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It took over an hour on Sunday evening for the ambulance to reach my mother’s modest WWII-era home in Kahala. My sister, Bonnie, says it was 72 minutes, to be precise.

Earlier that day, it seemed like we were making some progress. My mother’s condition was about the same, but the hospice agency had readily agreed to at least a temporary “respite” placement in a care home while her condition could be evaluated. The level of care she needs is now beyond our abilities and competence, and the hospice agency agreed, scheduling their RN to arrive first thing Monday morning to facilitate the transfer.

But events intervened when my mother, in her drug-muddled state, tried to get out of bed on her own. The good news is that she didn’t fall and hit her head. Instead, she fell and injured her leg or ankle, I’m still not completely sure which. One dislocation, one fracture. Then she lay on the floor for over an hour waiting for the ambulance to arrive. What if it were a stroke, or a heart attack? If this is typical, it’s another city service imploding. Take a look, Mayor Caldwell!

At about 4 a.m. Monday morning, my mom was transferred to an 8-bed care home in Palolo. It’s really quite a nice place. She has a private room and was sleeping peacefully when we visited. I don’t know if she’s going to survive, but while we worry about her condition, we don’t have to worry about her care any more. She’s being well taken care of by people who know what they’re doing. That’s a huge relief.

Islands Hospice gets a rave review for stepping in and making all the arrangements to move my mom to the Palolo home late Sunday night and early Monday. Bonnie is still amazed that the RN on duty not only arranged the transportation and found the empty bed, but showed up at the emergency room, waiting with Bonnie until the transporter arrived, then drove Bonnie home before returning to Palolo to check my mom’s condition and make sure all was well.

We are now in waiting mode. Our mother has been non responsive, and we’re waiting to see whether this changes as the pain meds are ratcheted down.

Hoping for the best, expecting…who knows?