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16PennyNail
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Member Since Mar 2024
Location: In the southern United States
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Default Jun 06, 2024 at 04:00 PM
 
Quote:
Originally Posted by Kathleen83 View Post
Hi SquarePegGuy, thanks for checking. Haven't been here for a minute because....I don't even know how to answer how I'm doing. Just when I thought I was finding my own balance, things went total FUBAR on me. Hubby's physically stable....mentally and emotionally all over the place. As am I, to be honest. Doesn't help that a lot of his talk and behavior now are flash points to a lot of my old issues, especially the PTSD stuff. Also didn't help that his medic alert pendant was taken away, because the company issuing it finally figured out (after I specifically informed them months ago) that he was under hospice care, so they had to disengage. Hospice provided a new pendant....which I told them wouldn't work (cellular network issues in this area) - and sure enough, it stopped working. Replacement not yet obtained.

Like the patient you visited, hubby is lucid and other than the obvious wasting away issue, is in relatively ok shape, but high risk of falls. When he does, he can't even roll himself over, let alone get back up. So without a medic alert pendant, I'm pretty much tied to the home now.

Sorry this is rambling all over the place, but I'm running on about 4 hours of sleep. And that was only obtained thanks to OTC sleeping pills. So, yeah. That's how I'm doing.
@kathleen

Hi Kathleen, I am 16PennyNail, or Robert works as well. Hospice is another tragedy I fell into myself, literally now. I was the youngest member of my mum's and dad's family but by a significant margin. I had a wife and a young son that a drunk driver killed when I was still working on my MD. This becomes significant because, in my grief, I returned here. As I was trying to finish school, there were several things that happened to place three members of my mum's family in Hospice care. When this happened, all eyes in the family turned to me. The two people I had to help care for were my mum's husband and stepdad. The other was Mum's oldest half-sister who lives here now; it was her second husband.

They were both physically big men, and I was a muscular ex-ranger. They thought I was not married, I could handle them, and I was attending medical school. They were in a home hospice, and one thing about my family is we beieve/d I added the past tense as I am one of the few remaining. Stepfather was first and had Stage 4 bone cancer that had spread all over him. I was his primary caregiver for right at four months. It is awful to see a person go that way.

The second instance was my uncle Harold, who had Melanoma. It got all over him as well. That lasted over five months; again, I was his primary caregiver; there were nurses who came but for an hour each visit. He was really hard to deal with as he would become combative, as much as he was able, when you tried to give him his meds or tried to get him to eat.

These were awful experiences. I am not sorry I did them. I was able to help and did. That is a hard thing. There may not be much to compete with it. My third experience with Hospice is that I am now in home Hospice care. I have nurses here 24/7. There are three male RNs who rotate on twelve-hour shifts. I call them the Manchurian Candidates, except the main character, could have had a better personality. I may know more than most of what you are dealing with. I am a trained MD, so I know a few things. I am so sorry you have to deal with this. No one should have to. I know you have heard it, but these are critical if you are the one they count on.

- When someone is that ill, it makes everyone around them ill. The stress and just everything else will make you ill.
- You have to take care of yourself. If you break, their support system breaks.

Those are the two biggest things I wish you did not have to do. I wish he were not ill. If you would like to talk, you can message me, and I would be glad to. I have C-PTSD, and my trauma team tells me this is just another layer on that cake. Please take care of yourself and be well. I did not mean to write so much. I swear sometimes, and my autobiography would read like a tragedy. This part of life is just that, a part of life. Wish it did not have to be.

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Last edited by 16PennyNail; Jun 06, 2024 at 04:05 PM.. Reason: Misspelling
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