deadly beauty
The ice storm hit us Thursday night, knocking out electrical power for a while. I didn't realize how bad the storm had been further north until I set out for Massachusetts this morning with the car radio reporting on the tens of thousands of New Yorkers still without power.
I drove across the swaths that the ice storms devastated, paralyzing the trees along the way with thick crystalline bonds. I wished that I hadn't packed my camera (somewhere in the back of my car that was loaded to the roof with boxes and bags of my life's accumulations, including my desktop, printer, and monitor and more cables than I could possibly have use for).
The landscapes I passed looked like stage sets for the Snow Queen or a scene from some alien planet. When I finally stopped at a rest stop, it was closed (no power). The other rest-stoppers were as unwilling as I to use the outdoor port-a-potties in the 15 degree weather. But many of them went back to their cars for their cameras to capture the bushes outside McDonald's, their thickly iced branches arched over like so many alien tentacles. The sun was out and the ice looked lit from within. I had no idea under which layer my camera was buried, so I passed up the chance for some amazing photos.
The news on the radio reported that some people will be without power until Monday. Several towns had curfews to keep people from driving over icy roads at night
It's a little chilly here at my daughter's, even though the heat is on. We have to figure out how to get more heat into my part of the house. I love it cold when I'm sleeping, but at the moment, I've got cold feet blogging.
I am worried about my (92 year old) mom -- not because of the cold (and my brother has a generator in case of power failure). I'm worried because the dementia is getting a lot worse, and she cries and wails almost all of the time. My brother doesn't want to sedate her, which seems to be the only thing to do at this point, as far as I and the doctor are concerned. I can't tell how much pain she's in, but when she moans, "oh..oh...oh....oh.." and seems to be in great distress, I can't help wanting to give her something more than Tylenol to relieve whatever it is, to ease her brain as well as her body.
But my brother won't let me, believing that there is no drug that will make her feel better but not knock her out. There might well not be. But I'd rather knock her out, take the pain and anxiety and fear from her face, give her some peaceful sleep, a respite from the demons of decay.
I can't stand to have to stand by and watch her suffer. And that's one of the reasons that I'm here and not there.
Our doctor ordered a nurse to come in once a week and see how's she's doing. My brother is objecting, for reasons that are only relevant to him and his demons.
Well, it ain't over til it's over, and I might have to get her out of there. But if I do, I will have to put her in a nursing home, and I don't think that she would survive very long there.
A former colleague -- one known for his series of extra-marital affairs -- once told me that he could live with guilt.
I don't live with guilt that easily.
I've given out, given up, given in
In a way, it's a relief. I don't have to go through all the complex strategizing to get him to compromise -- only, each time, to come up against a stone wall. Actually, it's more like being dumped into a vat full of jello. Either way, I get nowhere.
I'm out of energy and stamina. I give up. He can take care of our mother any way he wants.
He has arranged with a female musician friend of his to come and stay with our mother. Every once in a while. No set schedule. I've met her. She's nice enough, and, as far as I can tell, my mother likes her.
I wanted him to hire someone from an agency who is trained to deal with dementia patients. That is, who knows what kind of patience is necessary to deal with someone who pretty much lives in her own personal reality, which sometimes overlaps with a more objective reality -- but even then, with her own emotional twist. But he wouldn't agree to that.
So, I give up, and I'm intellectually and emotionally distancing myself from the situation. I will come in once a month to visit my mom. I hope that we both can take the emotional stress. It's almost better if she completely forgets who I am.
I'm hoping to be completely out of here and out of primary caregiving by the end of the year. It seems like forever.
it was only a matter of time
My mom fell down. I wasn't here. I was at my daughter's, when my mother tripped and fell. My brother was with her; he said she lost her balance (which she does occasionally) and fell in his kitchen. She has a big bruise on her bad shoulder. And, she says, everything hurts.
When I got back here the day after she fell, against my brother's wishes, I called an ambulance take her to the hospital. She couldn't walk unless we held her up, and she was in a great deal of pain. My brother wanted to take her to a walk-in medical office that has an X-ray machine; we've taken her there before. But I didn't want to take the chance. Suppose she had broken something.
The hospital X-rays showed no broken bones. A CAT scan of her head showed no pathology. It did show "volume loss," however. (Like that's a surprise??!!) The attending doctor wanted to keep her at least overnight because she was in danger of falling again. He wanted to hydrate her and give her a sedative (since she was agitated) and some tests, including blood. If she had stayed overnight, she would be been eligible for Medicare in-home help. My brother insisted on taking her home. So, we did.
She slept soundly that night and way into the day. Then she ate and went back to sleep.
And it has all gone downhill since then. She woke up at 3 a.m. this morning, incoherent except for crying that she wanted to go home and that everything hurt. I gave her an arthritis strength Tylenol, which seems to work well on her pain, and eventually, she went back to sleep. She repeated that scenario at 8:30 a.m. She gets up to eat something, and then goes back to sleep. While she's up, she's barely communicative.
The attending physician in the hospital gave me a script that says my mom needs one-on-one care 24/7 because there is a great probability that she will fall again unless someone has an eye on her constantly. .A nurse is coming tomorrow from the county's Adult Protective Services to evaluate her condition and her living situation. That is part of my strategy to put as much pressure on him as I can to hire someone to come in and help with her care while I'm going through my move -- and, of course, after.
But it is only a matter of time.
so, that's how it is
I'm standing by the kitchen window, looking out at the trees and the pure blue sky, drinking hot chocolate and eating challah smeared with Smart Balance. My daughter's voice drifts in from the living room, where she is reading a book to my grandson, who is sprawled on the couch nursing a fever and a cold. The book is one I bought her when she was a child -- "Grandma and Machek," about a Polish grandmother who tells her granchildren the story of her living in Poland as a little girl and how her friend Machek (who became their grandfather) outwitted a wolf. They are doing a home school unit on making a family tree, and we have just finished looking at two fading photograpsh of my 1940s extended family -- one that includes more than 50 people. I showed him the ones who came over through Ellis Island. He is interested in every detail.
Such is my life without care(giving).
But in a few minutes, I will be leaving to go back to the turmoil of the other part of my family, where my mom, who is in her nightgown day and night, needs better care than she is getting when I'm not there.
I visited a nursing home yesterday that's located 1.3 miles from my daughter's house and has a secure dementia unit with an enclosed outdoor courtyard. The bedrooms are big and sunny, with room for personal furniture etc. Unless my brother hires someone to come in and help with my mom during both this transition of my leaving and my actual departure, I will fight him for her guardianship and power of attorney. She deserves better than she gets from him; and I just can't give any more. I could see myself volunteering at the nursing home a couple of mornings a week and visiting her several days a week, at least until she gets acclimated.
My brother wants her, but doesn't know how to give her the kind, patient, consistent care that she needs. I just want to see her get good care. And I need to take care of myself for a change.
And that's how it is, as I go from this place of peace to that place of war. It never had to be this way, but that's how it is.
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.
