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Uncertainty Becomes Guilt Becomes Shame

I think it was Saturday evening around 4p. I'm not sure. I just checked my phone. No, it was Sunday. I lost a whole day when it happened.

Anyway, I made plans with a friend to go with me and Joey on a walk. But our plans got waylaid by an issue with Bob here at home. Afterward, I needed to shower him and so I apologized to my friend and cancelled. I did not cancel with Joey. But thinking back now, maybe it would have been best.

After things settled down, after getting Bob back into bed and me back into dry clothes, I figured Joey and I could still go. See, the days have turned sunny here and Joey and I love to go on walks these days. It was after three, 3:23p per my phone.

Our walks take only about 35 minutes with a drive time of 7 minutes to and from. We were away from the house a total of 49 minutes.

When we got home, I got Joey his food and water. He doesn't drink enough water so I add it to treats and meals.

Then, I nuked a frozen dinner (3-4 minutes) for Bob and ran it upstairs to him. I am adding times here so you get an idea of my thinking as I backtracked and continue to backtrack through the events of the day leading up.

When I got to Bob, he was asleep and didn't stir. "Hey babe," I said. But he didn't respond. I watched his chest to make sure he was breathing. He's not a light sleeper (nor am I) so when he didn't respond, I set the food down on his tray table and went to him. I rubbed my hand over his stomach, light, so not to startle him.

He still didn't respond. I put my ear to his chest. His heartbeat was different, erratic. Then I sort of panicked and grabbed his face. "Bob?" But his head wobbled and fell back, backward onto his pillow. His mouth slack-jawed.

Back when my mom was in hospice care to now with Bob, I know that stroke patients are given blood thinners. The first time it happened to Bob, three or four years ago, they told me all they could do is give him blood thinners and wouldn't because he was already on blood thinners. They could fly him off-island for a brain scan to see if he actually did have a stroke, mini or otherwise, and added, "but what good would that do?"

Okay. I understand the hands-off care medical professionals have assumed these days. I get it. I mean, that's the whole point of hospice and palliative care. Make the patient comfortable and let nature take its course. I get it. I do.

Even so, it sort of leaves loved ones with a sense of "what the hell do we do now?" And without any sense of hope.

I think about other people in similar situations. I've had my OTJ training in primary care.

My mom first, in 2015, who died eighteen months after moving in with us. Now, Bob. His care has been ongoing since mid-2020.

Not everyone can do this job. Whether they are unwilling to learn, are unable to learn, or have to work outside the home and can't help out, or, honestly don't want to. Not everyone wants to deal with this sort of care day in and day out.

"Well, what about assisted living options," I hear the cries.

Yes. There are other options. Any decent assisted living facility with memory care services costs upwards of $12,000 to $15,000 per month. If you're lucky.

The following is from for in-home care using a 40-hour work week as a model.

Depending on the level of care needed, home care for an older adult with dementia may run anywhere from $25 to $40/hour, which translates to about $4,000 to $6,400/month for full-time care (based on a 40-hour workweek). However, the cost can be higher in some states or areas with a higher cost of living.

In Friday Harbor, I pay $45 per hour which equates to about $7,800 per year. And that rate has gone up since 2016 from $35 per hour.

This is from the National Council on Aging:

The median monthly cost for nursing home care in the United States is $7,908 for a shared room and $9,034 for a private room... Brookdale, the largest operator of senior living facilities in the United States, reports a range of $2,795 to $10,030 for starting base rental rates in memory care communities.

I've bunny-trailed away from the real issue. Bob.

I lowered his bed into a more reclined position and let him rest. These mini-strokes last approximately 1 to 2 hours and can persist up to 24 hours. My mom's lasted 12 to 24 hours. Bob's lasted probably 1 to 2 hours because the walk alone, start to finish, was 49 minutes. He was out when I made my way up to him after I got home. And it took him approximately 10 to 15 minutes to snap out of it.

It's not easy to see a loved one unconscious. It's sad and scary. I called my sister. She contacted her prayer warriors.

I felt so guilty for leaving. We don't have another caregiver. Caregivers are a rarity on the island. The person I use isn't available right now. She is giving 24/7 care to another patient who is passing from this life. She's tried to help me find other people but no one has any time. Everyone is booked full.

So, what are my next steps? Well, after a bunch of guilt and pondering, after dealing with an abundance of shame, I think I need to get Bob back into hospice care. Having someone sit with him while I go on walks with Joey will be better than no one at all if he has another incident. The guilt is overwhelming.

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight. ~Proverbs 3:5-6

God bless you all. Me and Bob too. I wish I could see the future.

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