David Goes to a Garage Sale

I went to see Dad this morning and he was a bit groggy. I spoke with the new manager who has been with the company for nine years. She told me that in the morning he is less alert and that in the afternoon he is more coherent. He was playing dominoes the other day with the rest of the tenants in the afternoon! I think it has been better for him and for me that I cut down the visits to once every two weeks. He's happier to see me and I am happier to see him.

I showed him my latest painting (Marilyn Monroe) and chatted a little bit. I'm learning that if I follow the Alzheimer's Association's instructions on how to communicate with a person with dementia, such as making sure we have eye contact and watching him form his words rather than just listening, we have a higher success rate of understanding one another. Much higher. And of course getting him to see me form my words. Other tips are to never correct him or explain anything (a toughy) and always talk to him with respect (very very tough) like he's an adult (oh come ON.) But I'm trying to be teachable. And we have lots of teachable moments. I'm trying not to listen to the side of me that wants to say, "But....if I'm treating him with respect and like an adult, how am I NOT supposed to correct him when he asks me how Alan, my husband, is doing?" (COUSIN Alan?? And of course I don't remember about not correcting/explaining until I tell him Alan is married and living in Colorado and has horses.) Once I told him he meant Leonidas we were on track. I guess the point is that his being factual doesn't matter. The other tip is to hang out in HIS world. In his world, this all makes sense. So the idea is to treat him like an adult, with respect, in accordance with his reality. Do I want to be happy or do I want to be right?

So we go on a walk through the neighborhood and we look at all the houses and yards and talk about which ones we like, who's got a nice yard, who has a crummy yard, how the weather is cooling down, and finally I see....(can it be) a garage sale! And the best kind of garage sale: one with a slew of 16x20 usable frames with crummy outdated prints for (be still my heart!!) $5.00 each! So I ask him if he wants to go have a look, and even though he automatically says NO I very respectfully tell him that I have to get a closer look at all the "pretty art work". The other tip is deflection, and I am becoming pretty astute at this one. We spend another ten minutes looking at stuff and I also see a handcarved chair right out of Antiques Roadshow that I need to come back for. $25.00! So we go back to the house.

Once we are back, I sit next to him and ask him to help me work a crossword puzzle. He falls asleep and then wakes up and starts paddling around the house. So I know it's time to go. After some pictures and a hug, I bolted over to the ATM and back to the garage sale. Got the chair and the last two frames. Talk about bonus points!

Alzheimer's Memory Walk

We will be walking on November 13, 2010 at the Dallas Zoo. I would love for you to participate or donate! Here is the link: http://memorywalk2010.kintera.org/faf/login/partMenu.asp?ievent=424793&lis=0&kntae424793=2CF90B564AA24274AAB6591DA183CC46

We are trying to raise $300 or more! Please help us do what we can.

A Lose-Lose Proposition

Dad's alertness is improved, but some of the behaviors are also back, such as getting up every fifteen minutes at night and trying to get out of bed. Some nights he sleeps all night and some nights he's unable to sleep. I noticed on the daddycam all week that he likes to get away from the living room where everyone else is sitting. He goes into various bathrooms and gets stuck in there. Last week I timed the situation to see how long it would take someone to go looking for him. It was about 40 minutes. Since they put every one's meds up in a safe place, I don't guess there's anything too dangerous about sitting in a wheelchair in a dark bathroom for an hour (checking out nail polish and hair spray?)

I went to see him today. He's obsessive about taking off his shoes and his socks and messing with his feet. He cannot put socks and shoes back on. So I brought over a pecan pie, and sat and had a piece with him. He has regained his ability to feed himself with utensils, although halfway through he prefers to eat it with his fingers. I think with the dementia comes an inability to do what we would normally consider super easy tasks. When I asked him to put his socks on so we could go outside with the wheelchair, he got one sock on one of the footrest of the wheelchair, and when I pointed out that he needed to put the sock on his foot he said "I DID!" From the Alzheimer's literature I've been reading, these tasks are more complex than we would think. Since the neurons are no longer firing, a lot of these skills are gone. And it's not reversible. We might have slowed the progress down with medication, but the disease will march on. So I took him on the "walk" without socks. I've got to pick my battles, and "socks on" is not a big deal. Nor am I touching those feet. Sorry.

So we got outside and into the empty residential street in front of the house. I felt that since he no longer gets any physical therapy (I'll get back to that in a minute) it would be to his advantage to get some cardio by rolling himself in the wheelchair down the street. It would be nice to see him move independently. So I tried to encourage him to come toward me in the street. Unfortunately, the street was a little bit humped in the center line, so he kept rolling to the curb. Nor could he compensate by using both arms, or one more than the other to turn. The more I tried to explain it, the angrier he became. So I moved to the other side of the cul de sac and tried again on a more level surface. He wouldn't let go of the brake on the left side, and when I told him to put his hand on the wheel rather than the brake he said he was. By now he was fuming and went on about being old and not able to do anything (and therefore I was being unreasonable to ask it.) I should have dropped it long before this point, but I wanted him to get the hang of this. But it wasn't meant to be. He was so irate (as was I) that he was completely mishandling the chair (refusing to let go of the brake on one side while rolling with the other side) and I noticed he was bleeding. His arms are frequently covered with sores from his thin skin and aspirin therapy, and one of the scabs had been scraped off. I gave up at this point and took him back to the house saying, "I can't help you." Then I went home. My heart was in the right place, but there is no good manual on how to handle such a lose-lose situation. He loses because he gets no exercise and therefore little oxygen to the brain. I lose because trying to be "helpful" never goes unpunished in our situation. I gather the answer is to let him go at his own pace. Which is stopped.

I spoke with one of my watercolor classmates who just had a hip replacement. I told him about Dad's hip fracture and going to the hospital this summer. I told him how he did poorly in rehab because his mind was so far gone that he couldn't understand what was happening and fought the staff every step of the way. My buddy said that he had to work his ass off in rehab, and that if he hadn't had the balance or the wherewithal to give it 110%, he would not have been able to recover. The hip recovery requires a willingness to suffer in pain in order to get back on your feet for hours a day. I knew as he was telling me this Dad never had a chance. The only thing going for him was that it was a break and not a replacement. Without the ability to withstand ongoing pain, or balance, or follow instructions, what could possibly go right? The other thing working against him was his own problem with authority. If someone is telling him what to do, even if it's life saving information, he will refuse. He sees it as somehow "losing" to go along with someone else's instructions. This has always been part of his make-up.

Nowhere was it more obvious than on the first fall this spring. Dad had fallen in the living room of his apartment. Back then he was not yet in assisted living. He crawled to the bedroom and lay on the floor for 24 hours next to the wall from which hung the pull cord, which he would need to use to summon help. No one knows whether he just didn't want to use the cord (help is for wimps) or whether he didn't know what it was for, or even more probable, never registered that there was a cord. I know one thing, in his present house, we've talked about the cord repeatedly when putting him to bed, and he just laughs it off like that's the last thing he'd use. At night he sets off the alarm to get out of bed every fifteen minutes and has never summoned the nurse with the pull cord.

One thing pointed out in the Alzheimer's support group meetings is that, if someone has a personality characteristic and they develop dementia, it becomes exaggerated. His characteristic is defiance, and I just have to accept it and not let it get to me. Watching someone kill themselves isn't fun (especially if I'm kind of a control freak anyway), but I can't let him drag me down with him. The answer is pacing and just blowing off things like trying to improve his health. "Acceptance is the key to all my problems today" -Alcoholics Anonymous

Caring for the Caregiver

Anybody can be a caregiver, but there is an special kind of caregiver role that can only be filled by one type of person, and that is a child, a sibling, or a spouse. Even if the ailing individual doesn't trust or like the person in that role (generally as a result of his or her illness), it's still important that the caring relative get past that and fill the role anyway. If the person is married, it goes to the spouse. If the person is widowed, it goes to the son or daughter. I don't know how my sister did it for ten years, but she did, and now it is my turn. Like I said, this role cannot be held by a non-relative.

I see a few family members who come into Dad's house on the daddycam. I see 220 pound men sitting next to their mothers in the middle of the day, holding their hands. In the first case I watched, I knew Mom had severe Alzheimer's and could not speak or recognize her son. I watched his head bent as he held her little hand. I believe he was crying. A few days later, I saw another son sitting in a chair in front of his own mom, holding her hands. At first I thought he was the doctor checking her out, but after thirty minutes, I knew he was her son. He was talking to her as well as he could, probably letting her lead the conversation as her reality was the only one available anymore.

I have a hard time having the same kind of tenderness toward my father, since he is pretty quick to push me or my sister away. I will let the caregivers be the hand holders. I do well to give him a little sideways hug or stroke of the head. Going over there and just being in his presence is what I'm pretty good at. The caregiver has to do the caring of a parent or spouse for themselves, because for the most part, it is a thankless job. As most caregivers will tell you, you don't get a lot of thanks from the ailing person, if any. They don't know that they are a pain in the butt.

So the key is, to build a support group. It's the caregiver's responsibility to make sure they have this. It's too stressful to try to caregive without support (and if you dad or mom is taking care of their spouse, you should be taking care of that caregiver/parent.) I have people ask me what they can do. Obviously, you can't take over their role if the parents live together. But here's some ideas.

WHAT MY BOYFRIEND DOES TO TAKE CARE OF ME:

My boyfriend doesn't like to be around Dad. And that's OK. He's off the hook. I would rather go over there alone, than have to worry about whether my boyfriend is having a good time, which he won't. He does other things for me, including acting as my private secretary. Because Dad takes up too much space in my head (is it not obvious?) my boyfriend acts as my memory jogger. For example, he asks, "When Eric is coming?" (in a Greek accent) in reference to my piano lesson. Or "What time is your yoga class?" (What yoga class?)

Which leads us into the next thing he does: encourages me to relieve my stress. He's a walkaholic, and after the yoga class today, we hiked for an hour in the hilly woods (also his suggestion.) It's one thing to know you need to relieve stress, it's another thing to go do it. I get tired of walking, even with this perfect weather, but I have a rule in this relationship, "Unless there's a really good reason to say no when asked to do something (by the boyfriend), just say yes." Not everybody has a mate that wants to walk with them. I just lucked out.

He lets me vent on our walks. I try not to wear him out, but all this blah blah blah has to go somewhere. You'd think he'd get overburdened with it, but in truth, he's my most dedicated blog reader. He's also the "tech guy" who does things to the videos so that they can be put on the blog. Just being a fan is a huge support. He lets me play with my hobbies, videos them, goes along to see my art shows and listens to me play piano while he cooks supper. His favorite channel is the food channel, and his hobbies are cooking, biking, learning about physics and riding the elliptical. Yes he does have a brother, who lives in Athens, and yes, he is single. And this brother is also a reader of David per Week. Brother is also a caregiver for his ailing mother, and does a beautiful job.

WHAT MY SISTER DOES TO TAKE CARE OF ME

My sister reads David per Week and sends me uplifting emails in response to every post. The best thing about being Dad's daughter-caregiver is that it has brought us together as best friends. Most of what I am going through, she has already gone through. I can be very honest with her about the whole situation. (The bog version was sanitized??!) Sometimes Dad puts me in a tizzy, and she lets me get it ALL out. Just by her being there, I have the ability to keep it up. One of us has to be that caregiver. There is no one else that can be his daughter. Although I know of some elderly people who have been abandoned by their children (other than monetarily) we would never allow that to happen. The worst case was that of Dad's ex-ladyfriend, who's son refused to allow for her to be taken off life support, but to my knowledge, never went to see her. She lived as a vegetable for two years.

WHAT THE EXTENDED FAMILY HAS DONE TO TAKE CARE OF ME

I have received supportive emails and stories of how my cousins, uncles, aunts and friends are going through many of the same things. We just didn't know we were in the same boat, or how big the boat was! Some have called Dad. Whether he had the wherewithal to participate in the conversation is totally beside the point. It helps ME to know he is being contacted by people who care about him.

WHAT THE ALZHEIMER'S ASSOCIATION HAS DONE TO TAKE CARE OF ME

I will keep going because they give me a way to be among the family-caregivers of the memory impaired. I also want to be helpful to people who are hurting in that group. It's one thing to be verbally abused by some nut-job in downtown Dallas while you are waiting for the train. It's another when that person is someone who is supposed to like you (like your mom); that you are making sacrifices for (like your wife.) This is where we get our batteries recharged and reminded that this is a disease and not something personal. It's just like alcoholism (without the easy fix of sobriety). The dumbest thing I can do is react harshly to it.

Thank you thank you thank you to all my caregivers and readers.

David Gets a Bit Odd Around Company

I played a small concert with my duet partner on guitar on Wednesday night at my watercolor class. I decided that, since she and I practice on Saturday afternoons anyway, why not go to Dad's house and put on the same little concert for him. We got there at 2:00 and he and one of his housemates were put in the backyard to listen. The housemate is a sweetie pie with, I think Parkinson's, but all of his marbles and flawless manners. He shared the pie with us last week.

As soon as we started Dad undid his brake and started rolling around the backyard pavement. I told the caregivers it was OK for him to wander off in the fenced backyard (I've got no problem with him working out his arms. This is the most alive I've seen him in weeks, thanks to the anti-anxiety meds being reduced.) The housemate was all ears. Eventually, after a few songs, the caregiver did come out and put him back in front of my buddy and me. He cried, "What did I do wrong? What did I do wrong?" I told him he didn't do anything wrong.

He went back to rolling off once she went in the house and decided it was a good time to start getting undressed. When he took the shirt off, it somehow set off the alarms. I redressed him but didn't know how to turn off the alarms. I couldn't play through that, and had to get the caregiver to turn off the alarm. She came out and let him chat with her while we played. I told my gal pal, "If you can play in front of this audience, you can play anywhere." She also took lots of videos of our playing.

He tried to get out of the wheelchair for the last half of the concert, as well as undressing. He was also bored to death.

While I'm very happy to have him regaining his wits, I am also hoping that he doesn't go back to sneaking out of bed and falling. I watched him on the daddycam this week trying to figure out how to open the windows in the hall. He's back to asking for a knife to cut off his restraining belt that keeps him from standing up from his wheelchair. I hated to see him shit faced over the three weeks, but the alternative is an extremely willful child who likes to play with matches and gasoline. Dad doesn't look strong, but his upper body is still strong enough to do some real damage if he gets mad. We'll just have to wait and see. If the falls are going to start up again, I think it will be sooner rather than later. If it happens it happens, and we'll just start over.

I gave his sweet little housemate a hug for being such an appreciative audience and for putting up with Dad all day every day. It can't be easy being Parkinsonian and half deaf in the world of the memory impaired. Believe me, there's memory impaired as in, "now why did I go into this bedroom?" and then there's MEMORY IMPAIRED. Dad called him Earle all afternoon.