Dave's First Thanksgiving in His New Home!

I went to Dad's house for Thanksgiving because (1) I have no way to transport him and (2) I don't have to cook Thanksgiving dinner this way and (3) many of the residents were out with family today so there would be plenty of food for guests of those in the house. I did find out today that many of the residents' families lived out of state. This boggled my mind. Why would a son or daughter live out of state and NOT take their parent, who is in assisted living, to a facility closer to their home? It's like I told the manager today, a family member who is the primary "caregiver" doesn't have to do much (if they can afford a separate home.) But they do have to show up once in a while and be in the loved one's presence. I mean, sure, they don't have to, but what possible justification could their be for keeping them long distance?

OK, so maybe Mom can't handle the northern temperature anymore. Maybe. Or maybe Mom loves her friends where she is. But...these moms don't know who's sitting at the table half the time. I guaranty she'd pick a daughter or son over her housemate.

So I had dinner with Dad and we had turkey, dressing the whole nine yards, along with all the other residents who were in the same shape as Dad. We sat at the table with the man who stays in his room (except for occasional meals) and his daughter who generally lives in his room with him. We had a little chat. She thought it would be an improvement in Dad's quality of life if he were to be allowed to stand. All he wants to do is stand. I tried to keep an open mind. But, he also wants to walk out of the house, climb out the window, jump out of bed, dance, and anything else that lands him on the ground. I just nodded. I said we missed the window of opportunity because he couldn't be alert enough for rehab when the physical therapist was coming around, and the management of the house didn't want to incur the liability (and as an underwriter, I completely understand) by standing him up for "exercise." She volunteered to stand him up with me, one on each side. I know she means well. I have no doubt she is trying to help us. However, our dads are very very different guys. Her dad is not very demented and not trying to escape.

I also think that if Dad does a lot of standing, he will convince himself that he can safely stand, walk, etc., and then when he has another fall and has to be denied standing again or restrained further, isn't he just going to feel more defeated? Punished?

He's had a lot of agitation lately so they have doubled his Exelon. If they hadn't told me so, I wouldn't have picked up on it. He's not groggy. Other than when we took the video, he was somewhat talkative. Of course, the talk was about things like a horse race that had taken place in Galveston at American International where the riders were not given a bonus and he needed me to write a letter to the millionaire down there to make sure they got paid, and the four people from his home who were kidnapped this week, including him. When I asked whether the kidnappers fed him, he said, "Very well!" I'm getting better and better at just "going with it." When I cannot understand what he is saying (often the case) I just say "hmmm". Or "probably so." One of the things we learned in the dementia lecture the week before last was to avoid confrontation. To do that you don't say yes and don't say no. Say, "Tell me more about that, " or "I'll look into it," or "It's possible." And the lecturer was so so right. A day without confrontation over something like whether the green, blue, and red wires he's picking out of the turkey and dressing actually exist is an improvement over one with confrontation. When he then demanded that the caregiver get a paper towel and wipe all the wires out of his meal I just deflected, "Man, this cranberry sauce is unbelievable! Who made this??" Fight over. Dad's next words: "Best I've ever had."

The caregivers are good at making Dad feel special. They asked how he kept his weight off (given that they were both in the larger than life category). I said, "By chewing his food and spitting it out." He said he kept fit by working out a lot. Maybe he was thinking of the dancing he and mother used to do(?) The funny part is that these gals wait on him night and day. They know exactly how much he works out. He doesn't even use his arms to move the wheelchair. They laughed and conceded that he stayed "busy" (always fidgeting with something or struggling to get out of his chair.)

I picked out the movie Grease and the caregivers and I laughed all the way through. I sang along with the movie while working on an embroidered pillow. Dad wanted to go through my embroidery skeins (thinking they were candy) and he took out about ten from the bag, strewing them around the house. One of his sweet little housemates (periwinkle hair) asked me if I had a car. I said yes. She whispered that she wanted me to take her home. I said OK. I asked her if her house was in Dallas, to which she said, "Oh, we sold it." She would glance my way throughout the movie like, "Let me know when it's time to go." Dad asked me for Mom's number. I couldn't believe they weren't taking a big after-Thanksgiving-dinner nap. I'm afraid I got her hopes up about going home. Before I left, I noticed Dad was holding onto her wheelchair (still sitting in his own) as she was crossing the living room. They had a little train going. I don't know if she knew she had a passenger.

I hope everybody who reads my blog had a fantastic Thanksgiving. Mine was great. All I have to do is get out of the way and let it unfold.

Free Concert for Dave

I went to a dementia lecture on diagnosis and treatment which was sponsored by the Alzheimer’s Association. The speaker was a doctor who specializes in the treatment of dementia. She had a lot of very good points as far as treatment went, but I think the one I agreed with her most on was not to over treat. For example, feeding tubes do not prolong life (and I cannot imagine anything more uncomfortable.)

Here’s the gist of the talk:
1. Go to the hospital or rehab as sparingly as possible. (Believe me, we GET that.)
2. Starvation means they are coming to the end of their disease. (That's selective verbiage. I guess most people don't like to see their parents as dying.)
3. The question of "when do you move them" came up. She said "when they’re ready for assisted living. Otherwise, what's the point?" I guess the point in our case for going to independent living was so he could get meals made for him. Some people will cook for themselves, but I think Dad never was that self sufficient.
4. Don't overtreat. She said sleep aids like Ambien and Tylenol PM hamper memory. All us caregivers stared at each other over that one. We all like these on occasion.

Saturday I went to the Memory Walk at the Dallas Zoo. I had raised $375 for research and THANK YOU to all who contributed.

On Sunday Julie and I went over to Dad’s to give him a little concert of the duets we’ve been working on. At first I think he was afraid of Julie and started wheeling himself away from us and out of the living room. Dad gets it in his head that strangers are terrorists. I see more and more why the news is never on in these facilities. It just gets the tenants riled up. So one of the other daughters rolled him back to where we were seated. As we played, Dad became agitated, trying to pull the arm off his wheelchair and thrashing his other hand into the couch I was sitting on while playing. I finally said, “Dad, could you please stop slamming yourself into the couch?” It went on for another ten minutes. The music, being baroque, tends to put people to sleep. But not this crowd. One of the other residents came up and said, “So START why don’t ya??!” and “You’re losing your audience! So start why doncha?” in a thick Brooklyn accent. She couldn’t hear or see that we’d been at it for twenty minutes. What I find is that it’s taboo to have a belly laugh over this stuff, but I simply couldn’t help it. We’re always supposed to be on guard not to offend the residents, but it’s a pretty bizarre environment. One little drama queen became freaked out when she thought no one would come back to paint her nails. This went on for five or ten minutes, and Julie and I were still holding it together musically. Once we got to “Ode to Joy” I asked, “Are any of you Beethoven fans?” Dead silence. One of the caregivers finally said, “Not anymore.” She’s pretty OK with not requiring the “correct” level of seriousness, gloom, and pretence of normalcy that most family members seem to be able to keep up. The only resident that could hear us was Dad, and he was busy tearing the arm off the couch.

Julie and I left once dinner was served, and we both agreed this was an excellent place to practice. For one thing, there’s constant distraction, so it forces you to go above and beyond with focusing on the music and each other (as is a must for playing duets.) Secondly, there’s zero need for self-consciousness. If you blow five bars of music or forget to sharpen an F, no one catches it. This way we can work up to more discerning crowds. Julie, as usual, sounded like a symphonic player, which she used to be.

These Are a Few of My Favorite Things

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.

http://memorywalk2010.kintera.org/faf/search/searchParticipants.asp?ievent=424793&lis=0&kntae424793=9372ED21AAED40EF929BE2F55106A25D

Thanks to all have supported me in this walk. It makes me feel like I'm doing something productive!