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.
Dear Melody and Amy long distance, I am looking from the point of view of one whose time has not yet come but mental disability is hiding around corner. I am comforted by the fact that I can still think even as my recall gets worse rapidly. I cherish the abilities I have left. We read a great article about ten things you can do to preserve your mind for as long as you can. I do most and will start working on exercise again which I have really neglected since we moved. The Art League has become a job for me to do, a place to cherish friends galore, a group in which many are deslexic(sp)or learning disabled. I have found encouragement, helpful suggestions and critiques, shared skills, and unbelievable sucess. I don't drink coffee but I do drink one caffeinated cold drink a day which I don't suppose is comparable to coffee. Maybe I will give it a try. I do floss and keep my mouth clean. I also wrangle with my computer but I don't give up. I haven't been drinking apple juice but do eat a lot of apples and will dring more juice. I haven't had head injuries but I am careful and so far the few falls I have had haven't done real harm except to my dignity. I do meditate. It saved my life when I moved twice between seventy and eighty. I do try to fill my brain. Since I kept Juliana so much when she was a baby, I got sick a lot, but now I am almost never sick. I also take plenty of vitamin D. The article(sp) was in USA Weekend in the paper.
ReplyDeleteMy caretaker roll will come to me too as it does to most of us. I am so proud of both of you and love you dearly.
Aunt Harriet
Here's the stats: As in other studies, the ADAMS analysis showed that the prevalence of dementia increases significantly with age. Five percent of people ages 71 to 79, 24.2 percent of people 80 to 89, and 37.4 percent of those 90 years or older were estimated to have some type of dementia. The estimated rate of Alzheimer's also rose greatly with older age — from 2.3 percent of people ages 71 to 79 to 18.1 percent of people 80 to 89 to 29.7 percent of those age 90 and older. The ADAMS investigators found fewer years of education and the presence of at least one APOE e4 allele, a genetic risk factor for AD, to be strong predictors of AD and other dementias.
ReplyDeleteYou are doing all the right things, especially getting back into exercise. Whatever is good for the rest of your body is also good for the brain. Conversely, what's really bad for the body (sitting in a chair for years doing nothing but watching TV)is really bad for the brain. I think the physical exercise is more important than the cognitive exercise and diet. "Move it or lose it" applies to the brain as much if not more than anything. Given the family history (all of Dad's aunts) wouldn't we want to plan for the worst while hoping for the best?
Keep up the good work. You and Uncle Earl are good examples of What to Do Right. Ya'll might not be able to escape dementia, but I think we can all put it off as long as possible. Once you have it, it's like falling off a cliff mentally. Yesterday Dad asked how Mom was doing. I said, "She's fine."