This started when I checked in with an AZ friend about something else recently. We hadn't talked much while I was up north, so she informed me that her mother was now in hospice care, bed-bound, in my friend's home. I knew Mom had broken her hip last spring, had shifted from the hospital to a rehab unit, and when I'd thought about her it was with the expectation Mom was healed and back at her own home. Not only wasn't Mom at home, Mom's husband was in hospice status in his (their) place and one of my friend's regular jobs was to pick him up, bring him for a visit, and take him back to his place. When I heard this I briefly mentioned my own experience and suggested if she wanted to talk, go ahead and reach out. She replied that she might just do that, knowing I'd been through it with a parent, and that got the wheels churning. After starting to organize my thoughts, starting with her own current need not to lift anything heavy, I emailed her the following. Some was advice, some a reminder of how it had been from this distance past it. One thought led to the next, and I just left it as it came. It's incomplete, but.... My friend's experience will be different anyway. I'm hoping some of this will be useful.
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One thing that helps when bed bound is a kind of vibrating thin mattress , maybe liquid filled, under the sheet (?) which keeps pressure sores, aka bed sores, from occurring. Those get infected, are painful, and very difficult to get rid of. Much easier than worrying about turning somebody especially with avoiding getting your own back problems. I think that they also have mattresses which change position, like full flat to semi sitting like a hospital bed, can help. I'd ask about that if she's still bed-bound. The hospice people must have good information, possibly can provide some equipment (free?) unless AZ is VERY different from MN.
As for her giving up, depression is very common. Meds can help if you find the right ones. The wrong ones can make it worse, and not just for depression. For example Benadryl can cause hallucinations in some elderly patients. Hopefully bringing her husband over helps as well. Are there things she used to enjoy? Reading? My dad was blind but got audio books he liked. Does she have old photo albums to look through? TV shows from long-ago are on some cable/satellite channels if she's nostalgic. I love satellite TV for the nature programs, Steve goes for cooking shows - the competitive kind - ICK! LOL. Did she knit? Like music? Is there a way she can still feel useful? It can be difficult to feel like a burden on your family when they are your caregiver and you've lost bodily dignity, especially with the prudishness common in their generation.
On the other hand, can YOU accept her attitude? Hospice does have that ending after all. Either or both of you are probably grieving now along with every other challenge. Perhaps I should say all three of you if (friend's husband's name deleted) has developed a good relationship with your mom. All families are different. On top of that there will likely be some feelings of entrapment in the situation as it continues, and guilt for feeling that way as well as for the anger that can come out of it. If there is any way you and (husband's name) can get time out together as a couple while somebody else takes over for a few hours, grab it! Your marriage doesn't end because Mom needs care. You both do too, individually AND together. Don't lose that!
I was single while Dad lived here, but had 2 adult sons and a friend who helped. Plus a team of three county nurses/assistants for a lot of the practical stuff like getting him washed up, and keeping the house clean(er). Not sure if his Medicare took care of that latter or it was just a county hospice service. Meanwhile I worked 10 -12 hour days, then was on the other end of the baby monitor at night when he woke up confused. I think I sleepwalked through some of that time. I recall getting annoyed when people tried to tell me it was a rare gift to be able to take care of him, a "blessing". Yeah, sure! And yet looking back on it I am glad I was in a position to keep him out of a nursing home and with family instead of having to live his (and Mom's) worst nightmare for their old age. Mom died instantly from a stroke and avoided it, but she was the one who took care of Dad. Then she was gone.
He had multiple and accumulating disabilities, each one a next step downhill, but we dealt with them. Some, like swallowing problems, were a total surprise, but lo, the doc prescribed a thickener for his beverages from the pharmacy so he didn't choke... except occasionally. His short term memory loss became annoying, but learning the need to repeat, repeat, repeat without allowing him to think he was in any way at fault was helpful. Eventually it was so bad he couldn't handle the daily after-lunch phone call my brother made because it was so short term he couldn't hold a conversation or know whom he was talking to. That was very close to the end.
When he finally couldn't walk we got him a hospital bed and put it in the living room, moving the couch into his bedroom. There was nearly always light and activity there so he knew he wasn't alone. The next to last day there was suddenly surprising clarity. He asked me if he was dying, so we had a chat about that. I reminded him Mom was waiting for him - their belief system and 67 year marriage - and he was comforted by that. We had recently ended his meds except for pain control by full family /staff agreement, and he slipped away in the night. One of his issues by then was congestive heart failure, and when I said good night to him his arms were icy cold. I checked on him around midnight when nature called, and he was still breathing but not aware. In the morning it was over.
Then there was legal stuff. I don't know AZ but here's how it went in MN. First, we gave the local fire dept a copy of his hospice status from the doc, along with his personally signed DNR, months ahead. I called the sheriff's office (not 911 number) to report his death, and the fact they had that paperwork on file meant they didn't have to come out, lights and sirens, to try to revive him. We waited for the coroner to come out, pronounce him, and fill out paperwork. That's where it was helpful that I'd wakened at midnight and checked in on him so we knew the exact date. (He was 97 1/2 on the nose!) We had arranged with the same funeral home as for Mom to take care of him (cremation for both and if you do that you better know all the metal in their bodies like a pacemaker or joint replacement!). His O2 machine, tank, and hospital bed got picked up for the next person to use. They had a free joint burial in the local national cemetery since Dad fought in Europe in WWII, and we'd had that paperwork on hand. He got a 21 gun salute, and a flag, which my 'Nam veteran brother was given to keep.
I know I've been rattling on all over the place, but I hope some of this helps. There is some advance planning involved as well as the reminders to take care of yourselves.
Hang in there!
Heather
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