Category Archives: dementia

it was only a matter of time

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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

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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

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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 ate 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?

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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.

pillow talk

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pillow.jpg

This is one side of the pillow I made for my mom to encourage her to “self-soothe.”

I used cotton poplin photo fabric on which to print out the 25th anniversary photo of my parents, my mother’s favorite photo of the two of them. Then I pieced washable satiny fabric around the photo to make the pillow the size I wanted it to be. The great thing about the photo fabric I used is that it’s washable.

On the other side of the pillow is a photo of what there is of my mother’s immediate family. (It’s the same photo I used in our holiday card.) I call it the “family pillow,” and she holds it while she falls asleep. She doesn’t like sleeping alone in her bedroom; she says she’s afraid (not unusual for people with dementia). But when I tuck the family pillow under her arm and remind her that she has the whole family with her, she relaxes and is able to fall asleep.

We all need ways to self-soothe. I’ve been doing it with chocolate. But that hasn’t been enough.

So, today, just as the heavy flakes started falling, I had my first visit with a therapist who uses approaches to which I respond better than “talk therapy” and who takes Medicare. I’m still processing what went on in this first session, but I will say that I felt much lighter as I left than I felt when I got there.

Maybe I will make myself a pillow with the images that I need to empower myself to relax.

what the hell is that on her head?

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My mom is sitting down at the table having a cup of her fake coffee. AsI look down at her, I notice a thick smear of something light green stuck in her hair. Huh?
So, I touch it. It’s sticky. I smell it. It smells minty. Aha!

Toothpaste!

I have to admit it. I laughed a lot.

She has a spot on her scalp that always seems to itch her. When she tells me about it, I put Scalpicin on it, and that helps. I guess this time as she combed her hair in the bathroom mirror, she picked up the first thing that looked like an ointment tube and rubbed it on the itch.

The last time she rubbed something strange on her body, it was on her lips and they swelled to the point where I had to take her to the doctor’s. As far as anyone could tell, it was an allergic reaction to something, and I think she had been rubbing her 30-year-old Lancome cream on her lips. I cleaned out her beauty lotion drawer and it hasn’t happened since.

She always seems to be fidgeting. Mostly she takes sheets of Kleenex and folds them into squares and loads her pockets with them. She insists on having tops and pants with pockets. Sometimes I miss emptying a few when I do her laundry. Even if I use those scent-free dryer softener sheets, those little bits that stick to the clothes are a bitch to pick off.

She would love to fold blankets and other larger squares, but she has a torn muscle in her left shoulder. Not only can’t she raise that arm, but the whole shoulder is painful, even though she’s had a cortisone shot. After Thanksgiving, I am going to arrange for a physical therapist to come over and help her with that arm. I think I finally found a place that is certified for Medicare.

Very often, she snaps. No, literally. She snaps and unsnaps those closings on the tops I buy her so that they are easy to get on and off. Last night, she was desperately trying to snap closed the edges of a very old pillow case that she had long ago sewed snaps on to keep closed. (I guess she’s always been obsessed with snaps.) When she went to sleep, I resewed the ones that were coming off and sewed on a few additional snaps so that she could have yet another snap-happy fiddle thing.

Actually, I found a site on the web where you can buy fidget things for people with dementia. Other sites suggest these stress-reduction toys. My mom will not fiddle with toys. She will only fiddle with things that are familiar to her; things that she has used in her role as wife and mother. Safety pins are one of those things. She finds them and pins them to the inside of her slacks. The other day I found her picking her teeth with the point of a large safety pin. She has a drawer full of various dental picks that I bought her. But she uses a safety pin. Sigh.

I spend a lot of time Googling for ideas on how to calm my mother, since her fidgeting is associated with her nervousness and anxieties. As a result, I sent for a really soft furry teddy bear and made a sweater for it with a Polish logo. You’ve heard of Polar Bears? Well, this is a Polish Bear:

bear.jpg

I thought that stroking the bear’s fur might relax her. I thought the Polish theme would attract her. Nope. She knows it’s a toy. Cute, but no cigar.

Well, I tried.

In another day I’m planning to try to leave to go to my daughter’s for Thanksgiving. Actually, I’m going no matter what. I don’t know how my brother is going to manage, but I’m leaving enough food, clean underwear, desserts etc. so that my mom will have whatever she needs. He just has to make sure that she gets it all.
I can’t wait to see my grandson, who has been unofficially adopted by the guys in the local firehouse that his mom takes him to visit periodically. The last time he was there, they gave him a piece of real fire hose (including nozzle) and a door chock (whatever that is). His firefighter suit, of course, is compliments of Grammy.

firelex.jpg

He wants to be a firefighter when he grows up. Also the owner of a tree-cutting service. Or a road construction worker. Or some kind of para-medic/rescue worker.

I think he’s going to spend Thanksgiving rescuing his Grammy.

one hundred minutes of solitude

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She got up early this morning, appearing , already dressed, at the side of my bed, saying that she would just stand there and I should go back to sleep. Right.

So, I got up made her a cup of coffee, which she drank and then went back to sleep.

Ah. Found time. My rare chance to revel in the healing hush of the now-lush landscape.

I took a cup of Earl Gray tea and a Portuguese sweet roll embedded with Muenster cheese and went out to the rocking chair on the screened-in breezeway. Calli, my cat, glad to follow me into the dappled morning, scooted out the door to hassle the chattering jays who have learned to keep their distance from the chittering cat.

I sit and sip in the peace of some needed minutes without demands. Hummingbirds come and go at the red and white plastic flower. An indigo bunting perches on a tree branch, uncertain about approaching its favorite feeder. Calli has her eye on it. A pair of mourning doves bill and coo on a fallen tree trunk. Somewhere behind the thick screen of leaves, the lake glistens at the clear blue sky. I wish I had a hammock.

We took her to a geriatric specialist last week, hoping that the doctor might have some advice on how to deal with where mom is at — which is a moderate to severe dementia. My sibling, who has been in denial about the severity of her condition, finally, I think, got it: it’s only going to get worse. His handling of her situation, and his attitude toward me, makes my work here much harder than it has to be. If I leave, it will be because of him, not her.

She is 91, but she still dances with me almost every night before she goes to bed. We are both still good dancers. It’s about the only thing we’ve ever had in common. Dancing calms her down.

Calm. It’s what we all need here.

And lot more than only 100 minutes of solitude.

8 1/2

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That’s eight and a half hours in the ER. We left at 5 p.m. It’s now almost 2 a.m. I haven’t eaten since lunch, and I’m sitting here eating baba ghannouj with a spoon and drinking V-8 Fusion because it hurts when I chew because I had a tooth extracted yesterday.

Mom was severely dehydrated and we couldn’t seem to stop the diarrhea. So they took all kinds of her fluids for testing, stuck a hydrating infusion in her arm, X-rayed her and did a CAT scan of her stomach and intestines. They didn’t find anything that we didn’t already know was there — nothing that would be causing her to spend so much time sitting on the commode. So, just in case, they gave her an antibiotic and we loaded up on gatorade on the way home.

And just to make the day complete, as I was rushing around making sure I had her health insurance info and stuffing extra clothes for her in a bag, along with a water bottle, kleenex etc. etc., my flip-flop caught on something sticking out of her wheelchair and I did some damage to my second toe on my left foot. No time to worry about that, right?

At the hospital, my toe started throbbing; turning purple. I had the option of signing myself into the ER too and have my toe X-rayed, but that would have left my sib to deal with my mother all by himself. My toe hurt and looked gross, but I could bend it and move it, so I figured it’s just a bad bruise. I opted to tend to the reason we were there in the first place.

She is supposed to consume nothing but ginger ale and gatorade for the next two days. If she refuses to drink — as she has been doing midst fits of dementia — it’s back to the hospital and back on the IV.
I’m wondering how they ever manage situations like this in nursing homes. It took two of us to manage the care of one of her.

I’m still hungry. But I’m also tired. I don’t know which need I’ll fill after I post this. Either way, it’s been a hell of a day.

diarrhea, diarhea, diarrea

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It doesn’t matter how you spell it, google will find it.

And my mother has had it for four days now. We called the doctor today and will be bringing a sample to the lab for testing.

Nothing has worked to get it under control. I’m trying to make her drink Pedialite, but she’s not very cooperative. Right now she’s up combing her hair with a toothbrush. I’m making her some chicken broth with cut up baked potato. That’s supposed to OK for her to eat.

We’ll soon see.

a mother’s day reality bite

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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!.