a day in the life

from the (free) magazine for dementia caregivers published the Alzheimer’s Foundation of America (careADvantage, Summer 2008 — PDF) – an article by Richard Taylor, PH.D., a retired psychologist who was diagnosed with dementia.

When dementia enters a person’s mind, when it enters dynamics of a family – of a husband or his spouse – how we communicate, why we communicate should/will shift.

[snip}

It should shift away from mutual understanding and agreement and toward staying connected, giving and receiving love, supporting each other in ways we never thought we would have to do. It gets less and less about about the facts and more and more about feelings. It moves (quite unfortunately) from looking towards tomorrow to looking back at yesterday. (Today just gets lost!)

As the disease progresses, the burden of adapting, of figuring out what the other person wants/means/understands shifts more and more into the minds and hearts of caregivers.

About seven years ago, when my mother was first diagnosed with dementia, I started reading and researching what would mean for both of us. Slowly but surely, I became the mother and she became the child. That was something to which it was really hard to adjust. Now, she calls me her sister. I don’t try to correct her. It really doesn’t matter. I’m her primary caregiver, and it’s me to whom she looks for comfort and safety.
That’s why my stomach is in knots at the thought of leaving her with my brother, with whom I can no longer share her caregiving because we disagree on so many things of importance in every day life. I can take her with me, but he has POA over her finances. Control is a big issue.
I don’t know how he thinks he can take care of her without me and without paying to bring in qualified and caring help.
This is what today was like for me (other days, it’s giving her a shower, changing and washing her bedding, planning and shopping for her food, doing her laundry, cleaning her floors [which I don’t get to nearly often enough]):
11 a.m. – 2 p.m.: My shift. Mom slept until noon. When she got up, I made her lunch (of tuna and egg salad, which I made the day before during my evening shift and which she usually likes). She at a half of her sandwich, a plum (which, of course, I had to peel for her), a cup of her fake coffee, and a couple of cookies. I gave her her antidepressant and some Tylenol because her shoulder was hurting. I wrote down the meds I gave her on the log sheet on the frig. I noticed that she had a sore in one nostril, so I put some salve on it. By 1:30, she wanted to take a nap. When my brother came to take over, I said I thought we should take her to the doctor. He responded with a detailed explanation of what he thought the sore was, and I couldn’t get him to agree that she needed to see a doctor. Not wanting yet another argument, I didn’t make the appointment.
2 – 5 p.m: My free time. I went outside to water my parched tomato and other plants, and then I harvested some basil and parsley for freezing. I killed a lot of Japanese Beetles and had to throw away two of the tomato plants because they were totally dead. Then I went inside and sorted through stuff I could give to the Salvation Army. I answered my email, ate a bunch of delicious cherries, played Scrabble.com with a friend in Saratoga, and did a search for where I could take my broken electronic stuff for recycling. It turned out that there will be a special day in this town where I could do that. I shared the information with my brother.
My brother’s shift. As far as I could tell, when she woke up, he gave her more to eat because she was hungry, and she went back to rest. He put the tv on and sat there tapping on his laptop. I stopped in at one point to use the stove to boil potatoes for salad. I came back to check the potatoes around 4, and he asked me if I made the doctor’s appointment. I said I didn’t because he didn’t tell me that he agreed that I should do it. He blamed me for misunderstanding, and so I called the doctor, who, it turns out is tomorrow and all next week.
5 p.m. – 8 p.m.: My shift: I made chicken and mashed potatoes for supper. She sat in her recliner in front of the tv and ate some cantaloupe while I watched the news from the kitchen. My brother walked in and started to check what else was on television. He does this often, and I reminded him that it was my shift and everything was fine and I was making her supper and we were watching the news. He decided that she should have some root beer with her dinner (I would have given her juice). She ate her whole dinner and then I took her outside for a while to walk a little and then sit. While we sat, I cut and filed her nails. We went back in for dessert. She was just finishing her fake coffee and cake when he came back in – poked around in the dish drainer and chastised me for putting a fork in the place designated for knives. (I have learned just to say “umm” and not try to argue because it upsets my mom) I knew that she was getting a little sleepy, but she was sitting calmly watching the tv with me while I made some potato salad (which she likes), so I left well enough alone. He decided she should take her laxative and should lie down. So, he gave it to her and took her into her bedroom; but she sat up right away and started fiddling with the quilt. He started to be curt with her, which got her upset. I asked him to leave because it was my shift anyway. He finally left, and I had to sit down next to her with my arm around her for more than 20 minutes to calm her down. During that 20 minutes, I had to help her up to the bathroom three times. Her stomach hurt but she couldn’t do anything.
She finally agreed to lie down and rest.
8-11 p.m. My brother’s shift. My free time. I started this post, packed up some boxes of my stuff, fed the cat, got myself ready for bed, and watched my favorite summer tv show: Burn Notice. When I went down to start my shift, my mom and my brother were laughing and talking. She is fine when her caregiver is paying positive attention to her. She has agitated meltdowns when she is spoken to harshly or chastised for doing things wrong.
It is now 12:30 a.m. When my 11 p.m. to 11 a.m. shift started, I gave my mother a snack and a Tylenol, and then I helped her brush her teeth. She wouldn’t put on her nightgown but wanted to sleep in her clothes. I asked her why. She said because she was afraid. I asked her what she was afraid of. She said she didn’t know. She is often afraid but doesn’t know why. I’m haven’t gone to sleep yet because, if she holds true to form, until about 3 a.m, she will be up at least once an hour to go to the bathroom, and she needs me to help her.
She went to sleep without a fuss because her previous hours were calm.
I don’t want to leave her where I’m not sure she will get proper care. She will be lost without me despite the fact that she spends as much time with my brother as she does with me. If she stays with him, he needs to bring in qualified care. And that means that he will have to spend her assets to do that. But he doesn’t believe that I’m really going to leave; he doesn’t believe that our mom’s dementia is as bad as it is; he doesn’t believe that he will have to bring in qualified care to replace me.
I can challenge his POA and take him to court if he fights it. A lawyer I know said that, if that happens, it could cost me as much as $10,000.
I can leave her behind, visit, and if she’s not being properly cared for, ask Social Services to do an assessment.
Both her doctor and the hospice nurse (who will no longer be able to certify her for hospice services because there’s no indication any more that she might be dying ) have said that she belongs in a nursing home where she can get 24 hour care.
Talk about being between a rock and a hard place.
But no matter what, I have to get out of here for the sake of my own health and sanity.
I did not post this lengthy piece just to vent and complain. This is part of my documentation of this unbearable situation that I’m in.
ADDENDUM: It is 1 a.m. The electric eye alarm that my brother installed goes off to let me know that she is up. She is sitting in bed. Where am I, she asks. You’re in your bed, I tell her. Where am I, she asks again. I try to get her to lie down. She pulls at her sweater. Take this off she says. Do you want to put on your nightgown, I ask. Yes, she answers. And so we change her clothes and she lies down again. And so the night will go.

who am I?

That’s the question she asked as she finally sat up in bed somewhere close to noon today. Usually she asks “Where am I?” Obviously, her dementia has gotten worse.
I tell her her name, in Polish, in English, her maiden name, her married name. By then she’s onto her other worry — “Can I go home now?”
It’s night now. I was with her most of the day, since my brother had a dentist appointment. When I’m with her, I try to respond with care to every question, every mood, every demand. After all, her world must be truly terrifying. And I’m her anchor.
Except she’s my anchor as well. I can’t move beyond her peripheral vision, or she panics. She is downstairs now with my brother, banging her cane on the floor and calling for me. My contact at the Alzheimer’s Association local chapter tells me that it’s not unusual for dementia patients to latch on to the most trusted caregiver and constantly shadow them. That’s what she’s doing, and it’s making me crazy.
I am holed up in my room, television blasting so that I don’t have to hear her distress. I am eating cherries and chocolate chip cookies. My stomach is in knots.
Meds only seem to make her worse in other ways. She needs 24 hour care, and it’s become too much for two people. But my brother wants her with him.
And I want to get away from this whole situation, even though she pleads with me: “Take me with you.”
It’s beautiful here on the mountain. But it’s also a prison, especially for her.
“Where are the streets?” she asks. “Where are the families?” she wonders as she looks out the window at the lush trees and patches of blue sky.
It’s hard to take her anywhere because she needs a toilet nearby. And her mood can go from placid to panic in a heartbeat.
She has lived too long. I hope that I am not still alive at 92. Or if I am, I still have my mind and my sense of humor.
Meanwhile, I’m sorting through all the stuff I brought with me to this place and downsizing. And packing.

a mother’s day reality bite

The Limerick Savant has put out a call for Mother’s Day limericks. I dare the jester to print this one, an original by this burned out, currently bitter caregiver:

Of mothers there are varied kinds.
Some are honored; some are maligned.
There’s no perfect mater
and sooner or later
you learn to accept what you find
To “mother” with grace is not easy.
You’re expected to always be breezy.
And when you mother your mother
‘cause a choice there’s no other
you likely go out of your mind.

Anyone with a Mother’s Day limerick to share, email your creative endeavor to limericksavant@gmail.com.

Obviously, I had a meltdown today. Told my sib I just don’t care anymore. Either he agrees to let me hire someone to come over here and give her some companionship, or I give him whatever money she gave me and I’m out of here. (The reasons why I only have those two choices are too dysfunctionally private to share here.)

I left home when I was 17 because I couldn’t get along with her (I’ve blogged about that before). When I thought she couldn’t live on her own anymore and she was always calling me long distance about various ailments, I decided to take her on, hoping that we both had changed enough to find a way to coexist — if not actually enjoy each other’s company. What an idiot I was.

I find that I don’t mind at all doing all of the chores, both for her personally and just general cooking and cleaning. I just can’t stand her company. I am a terrible daughter. And I don’t feel bad about that at all.

According this site, she’s nearing the end of stage 5 dementia, moving rapidly into stage 6. There’s one more stage after that, and she could live another decade. F**K!.

Assassination Christmas

Bizzare.

It’s Christmas. I just finished watching The Bourne Supremacy and made my mother some chicken soup, since she’s got what looks like a tooth abcess — swollen jaw and pain and on an antibiotic prescribed by her dentist after I called him at home early on Christmas Eve.

Christmas Eve I spent reading Hunter’s Moon, a paperback escapist novel that defies categorizing, but does feature an assassin who is a werewolf and a female who hires him to kill her because her mother is driving her crazy and she can’t bring herself to be mean to her mean mother.

Aha. A pattern here, bizarre though it might be.

A month or so ago, I rented Assassination Tango, a movie that deserves a lot more than the little attention it got. Robert Duvall made my mouth water. Perhaps there’s a little werewolf in me.

Loveable assassins. Wishful thinking?

That mesmerizing flow of light and dark. That dancing with your demons and stepping fast to keep your balance. Life with adventure, sweet danger, passion, power.

No dancing here for me this Christmas, though. Just fantasy assassins with heart.