Category Archives: caregiving

a deep sleep

Posted on by
3

It’s six o’clock on Sunday. My mother went to bed around midnight last night, and she’s still sleeping. That’s 18 hours.
We tried to wake her up, but she only mumbled something about her whole body aching. We check her periodically to see if she’s still breathing, the way new parents do with their new baby.
I take a shower and wash my hair and make sure I have all her medical information is ready. In case.
What if she sleeps through tonight. Do we take her to the hospital. Do we just keep an eye on her and wait until she wakes up by herself. If she does. What if she doesn’t.
These are questions, but I write them as statements because no one has the answers. It’s one day, one hour at a time.
I spent hours this morning, while she slept, shredding old bill statements, throwing out things I’ll never use and probably no one else will, packing up more books to take to the library, and filling bags of odds and ends for the Salvation Army.
I am letting go.
Is she, also?
———————————————————————————————————–
She woke up at 8 pm, weak and disoriented. I got her to take her meds, and then I fed her some Jello. And then some homemade turkey soup with pastina. A cup of her fake coffee and a couple of cookies later, she felt better. It’s now after midnight, and she’s still up and weepy again. My brother is watching tv with her. I need to sleep, because I’m sure that, when she’s finally ready for bed, I’m going to have to lie down with her.
What do they do with dementia patients in nursing homes who won’t go to sleep and want to go home?? That’s not a rhetorical question.

the tyranny of her dementia

Posted on by
2

She treats me like a handmaiden, issuing one-word commands that I’m expected to obey immediately. Coffee. Tissue. Shoes. Bathroom. (OK, well I do obey the “bathroom” command immediately.) Sometimes she can’t think of the word, and so she’s developed hand signals to indicate what she wants. She expects me to be with her all of the time. She even wants me to sleep with her. We are back to the boundary-less childhood from which I couldn’t wait to escape.
I took a day off today, drove to Albany for lunch with my former work colleagues, including our boss. We are all female.
My cell phone rang while I was there. My brother had dialed my number for my mother. For ten minutes she wailed and ranted on the phone, mostly gibberish, but also condemnations for leaving her for my “girl friends” and threats to burn the house down and break everything in it. She laid on the guilt, guilt, guilt. “You’ve got to come home right now,” she kept insisting. I told her that I would be home soon, soon.
Five minutes later the phone rang again. It was my brother, chastising me for the glass shelf in the refrigerator being sticky. Clean it yourself, I tell him.
When I finally get home and walk in the door, she just misses hitting me in the face with the handle of her cane. She’s still mad. Hadn’t eaten all day. Wouldn’t take her meds. So much for brother as caregiver.
I think that she would be happier in a good Catholic nursing home, where she would have activities and people around to distract her, daily mass to attend. But my brother won’t allow it. And he has Power of Attorney.
Meanwhile, I am held hostage to her increasing dementia, and I am making plans for my escape.

oh those ravelled sleeves

Posted on by
1

Macbeth is not the only one who yearns for “sleep that knits up the ravell’d sleeve of care.”
My mother has spent the past two nights unable to sleep. That means we don’t sleep either.
And here’s yet another reason to love the Internet.
At midnight, I get onto Google and search for “elderly insomnia.” Lots of information there, including suggestions for drugs such as Lunesta and Desyrel.
I decide to take another tack and re-educate myself about our circadian rhythms and the function of the pineal gland (the famous “Third Eye”) in producing melatonin, which makes us feel drowsy.
My mother gets practically no daylight, which means that her pineal gland is probably not producing enough melatonin. On top of that, her brain atrophy might be affecting the pineal gland as well, since it’s located in the deep middle of the brain.
In the back of my “pill” shelf (you know, Omega 3, Resveratrol, MicoMedicinals, and other stuff I buy and then forget to take), I find a bottle of sublingual melatonin, 2.5 mg.
I take one and give one to my mother.
It’s now 1:16 a.m. We are both still up, but it can take more than an hour for the melatonin to kick in.
Yawn.

1 to 1

Posted on by
Reply

That has wound up her sleeping schedule, one a.m. to one p.m. And sometimes she actually sleeps until it’s almost supper time.
They used to call it “hardening of the arteries,” , the condition that is causing her vascular dementia. It doesn’t matter that I feed her healthy food now. Almost 92 years of kielbasa is a very long time. It’s too late to take the cholesterol medicine she has always refused to take.
Yesterday morning she woke up at 8 a.m. agitated and muttering “We have to get out of here.” “We are going crazy.” When she tried to stand up her legs gave out. “Who’s beating me?” she asked. “Everything hurts.”
Every once in a while, in one of her altered states, she says, “I’m sick. I’m dying.” And then she cries.
There’s not much we can do except try to reassure her in calm, easy voices. We are here, we say. You are not alone, we say. Everything is OK. We will not leave you.

one weird morning

Posted on by
Reply

My cat is throwing up on my mother’s rug while she’s in the bathroom having a dementia meltdown.
My brother is yelling at me because I took his clothes out of the dryer (and put them in a laundry basket) so that I could put my mother’s clothes (that I gathered and spot sprayed and washed) in the dryer.
I finally get my mother settled in her recliner to watch the Catholic mass on EWTN. The priest is already in the middle of his sermon, disparaging global warming because of something to do with God putting the sun up there for us.
While I make my mother lunch, I am half listening to what the priest is saying, and it sure sounds like unrealistic nonsense to me — admonitions to live by the Church’s rules, a disempowering assertion of who’s the real boss of you.
I can’t see how any of that sermonizing can be of much help to anyone searching for guidance in how to give personal meaning to the actual time he/she spends on this planet.
What I believe is that where psychology and spirituality (not religion) overlap , it is at that broad intersection where one can discover one’s own power as an individual living in this place at this time. I am not using the word “spirituality” in any theistic sense, but rather in the sense of our animating energy, whatever it is that inspires us, awes us, puts a fire in our bellies. One’s own “spirit.” “Soul.”
The shaman of ancient cultures knew how to create that intersection. I think that the best of today’s therapists understand how to do that for today’s seekers.

pillow talk

Posted on by
2

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?

Posted on by
1

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.

cats will be cats

Posted on by
1

I thought my overweight nine year old cat was too slow to catch anything live. But yesterday, as I sat on the front steps trying to get some Vitamin D, she came trotting over to me with a lax lump of chipmunk in her mouth. I suppose she was (as cat’s will) bringing me, the only mother she’s ever known, a present.
I felt bad that I had to grab her by the neck and make her put the poor critter down, since she was probably very proud of her catch. But I did, and she did, and the chipmunk, unhurt, took off like a shot toward the sheltering bushes.
We rather like our chipmunks, who spend a great deal of time waiting under the back steps and in the drain pipes for the squirrels to leave so that they can graze on the fallen bird seed. I have noticed two neighboring cats, one white, the other black and white, slinking into our back yard to try and catch one of the little guys. The other afternoon I happened to look out the window to see the black and white cat succeed. I ran to the door and tried to frighten the cat into dropping his acquisition, but the fast feline was already out of sight.
It’s a cat-catch-chipmunk world out here on the mountain.
It’s also a world terrorized by an old lady who believes she is entitled to every minute of our time.
Again, here it is, after midnight, and I’m still up. Still blogging. Still wishing for a world where cats and chipmunks live peacefully side by side and where old dementia-ridden ladies are sweet and cooperative.
But cats will be cats.

scenes from mountain life

Posted on by
Reply

This is my 20 pound calico cat. She likes to lie in the backyard weeds watching the chipmunks freak out. She’s too fat and lazy to even seriously chase them. But she’s happy lolling around in the weeds that never get mowed.

backyard.jpg

This is our wild and weedy “front yard.” I put in the hostas and the hanging basket. The other temporary contribution is not my doing.
frontyard.jpg

Meanwhile, mornings seem to be the worse time for her. She’s not sure where she is. She’s not sure who we are. She wails and cries and won’t take her meds. Still in my bathrobe, I sit next to her at the kitchen table, pat her hands, give her hugs, let her rant until she’s spent. Eventually, I slip a calming pill into her mouth. Then she has a cup of coffee.(Well, it’s not real coffee because she’s been having IBS symptoms. But she doesn’t notice any difference.) And that’s the start of our day.

one hundred minutes of solitude

Posted on by
1

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.