I went to the support group for the Alzheimer's Association at one of the memory care facilities around town on Tuesday night. I guess it had been a couple of months since I'd been to this one, and they all remembered me. I saw my pal who's had her mom living in the house for fifteen years with first cancer and now Alzheimer's. Mom's finally bonded with her new caregiver and lets her take her out and about to shopping centers. My mantra is "Let the parent adjust." If you never change anything, or get them outside of their comfort zone, they have no reason to do so. The initial response will probably never be, "Great idea! Why didn't I think of that?" At work we say, "It's easier to ask for forgiveness than it is is to get permission."
I met two new spouses of residents there. One who's wife has found a new "gentleman friend". She thinks her husband is her brother. He is taking it like a champ. I think this would be tough, but for those of us around the relative, we know it's not within their control. He's just happy she gains some comfort from this other resident. If you haven't seen the movie "Away from Her," this is the story with Julie Christie as the star. Our little group talked about good movies and books to help us gain a better understanding of what this is like for others going through this. Another is Still Alice. We had almost all read this one. (SPOILER ALERT, GO TO THE NEXT PARAGRAPH IF YOU WANT TO READ THIS BOOK AND HAVE NOT YET DONE SO!) I talked about how the main character had been diagnosed with Alzheimer's, and being a neuroscientist, planned her own suicide when it got to the point where she couldn't answer a list of questions. But by the time she got to that point, she couldn't remember the plan (or that she had one.) No one passed negative judgement, at least vocally. Nor did we go into further discussion about this. I later found out that the group was extremely religious. As in, they all went to the same church and one was married to a famous preacher's private physician. But no one gasped at the thought of suicide with this disease. The deal is, by the time you're out of denial, it's probably too late to make choices for yourself about anything, much less ending your life. And nobody else can help you pull it off without risking themselves legally. My mother begged me to kill her (repeatedly) when she was ill with cancer (and it wasn't the morphine talking.) I knew there was no way to assist her without Dad having me thrown in jail. The guilt of not assisting is terrible.
We did talk about the reasons most people with Alzheimer's die. It's basically from starvation. The other thing I had heard of was pneumonia. Or infections from inhaling food while swallowing. This came up because I pointed out Dad appears to be slowly starving to death. I mean, just look at the videos. He's always been a spotty eater. His thing now is spitting out food after chewing it awhile.
We also talked about diagnosis, and did it matter? We discussed how dementia was the "symptom" of a whole host of diseases. Alzheimer's was just one of the diseases. The group leader said that the only benefit to getting an accurate diagnosis was to get medication prescribed. Otherwise it didn't matter. You just deal with the symptoms. The medication for dementia or Alzheimer's masks the symptoms, but the disease is still progressing at it's normal pace. There is no way to slow it down or halt the progression. Once the disease progresses to the point where the meds can no longer cover up the symptoms, then the person has a huge drop in cognitive function and you see how bad off they really are. I didn't open my mouth, but in my case, I got to problem with masking symptoms. The longer I can hold off drooling or screaming or hallucinating, the better. Bring on the meds. In Dad's case, he has Parkinson's with dementia, and possibly Alzheimer's. I know one thing, the dementia is what is killing him faster, whatever the diagnosis. For example, Michael J. Fox has Parkinson's, but he's dementia-free. Mohammad Ali's family is in denial about the dementia. "He's sharp as a tack." Give me a break. Bottom line, with Parkinson's the dementia is secondary if addressed at all. With Alzheimer's treatment we cut to the chase and focus on the dementia primarily.
I asked my pal if she had considered moving her mom elsewhere. She said it wasn't to that point yet. Wasn't to what point? Destroying her marriage? Or her mom could still swallow? She justified it by saying she'd had her mom's mom living in the house when her husband died. Well, I got that topped (exactly my point! My grandmother drove my mother nuts by living with her her whole life....) but I didn't pursue it. To each his own. I told them I was going to Dad's house every two weeks now. The gentleman who's wife had the boyfriend thought that was a bit light. I said, "He's my dad. I'm not married to him. He needs to have his own life and I need to have mine. It would be different if it were my boyfriend." Fortunately we can be pretty open with each other in this way. I feel sorry for him. It's pretty obvious he's right behind his wife from a memory loss standpoint.
Two weeks ago I had told the caregivers at his house that if they wanted to fatten him up, they needed to feed him cheese enchiladas and Cici's pizza. The manager said, "Man after my own heart." The night I was at the Alzheimer's group, she made him a batch of enchiladas. He ate the whole plate and the rice. Then he started puttering around the kitchen. She said, "Whatcha lookin' for Dave? Ya want some more?" And he said yes, so she gave him another plate full and he ate that, too. People are pretty uncomplicated. People with dementia are probably more so. Just do like you would a dog or a two year old. Lots of happy talking, little pats on the knee, and comfort food. That "treat 'em like an adult" stuff? Forget it.
So I went to pay his rent on Wednesday and he was alert. I called my sister to have him chat with her, and it's pretty clear that if someone is not in the room directly in front of him, he can't really have a meaningful conversation. He is finding ways to have fun with the other residents there (he played dominoes last week I heard, and he walked all the way down a hall twice with lots of assistance.) One of the things he was doing to one of the ladies was taking her walker and wheeling it away from her. I think this is the demented version of pulling pigtails. She kept saying if she got it back she would brain him with it. He continued to wheel it out of her reach. He was starving for his pancakes, and they finally cut them up and put them down in front of him at which time I went to work.
Today I brought over some pumpkin pie. He ate a large piece and I had a piece myself. He had had another fall two nights ago when he stood up in his wheelchair and came down on his hands and knees. He was still tied to his chair by his belt. They found him with his legs up halfway out a door. The poor young male caregiver was freaked out when he called the manager to tell her what happened. Fortunately, it was not a catastrophe and he was not hurt. I'm guessing that he got the belt down around his lower legs and maybe just came down forward on his knees to crawl away from him chair. He was talking and in no pain afterward. He never called for help. They have started tying the belt around his waist and looping it around one of the metal rails on the chair so he can't get it off. The young male caregiver has dubbed him Houdini and Dad likes that nickname. He's still persistent about stripping to bypass alarms (they can't attach it to his skin, just his shirts), and trying to climb out of bed. However, I think this new staff has done a better job of responding to alarms. They are pretty attached to him.
I will be in the Memory Walk on November 13th at the Dallas Zoo. Please donate to my walk! Here's the link to do so! We have no cure for this. However, they are closer to a vaccine you and me to protect us from this.
Thanks to all have supported me in this walk. It makes me feel like I'm doing something productive!
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