Category Archives: caregiving

the Russert Rainbow

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I haven’t seen anything appear through a search yet, but both Brian Williams and Keith Olbermann mentioned that, as the people gathered at the Kennedy Center to honor Tm Russert, a rainbow appeared over the NBC Washington Studios.
That is such a lovely and uplifting piece of synchronicity.
Not surprisingly, there are no rainbows over here in the mountains — just lots of thunder and rain and some kind of blight happening on my little “oasis in the wildnerness” garden. And I can’t take a photo of it to see if anyone knows what it is because I dropped my little camera while away the other weekend, and it broke. I bought a new little one but haven’t had the time to figure it all out yet or download the software.
Meanwhile, despite taking an antidepressant, my mom is having more frequent bouts of uncontrollable crying. She keeps asking for her husband, my dad, who passed away almost 25 years ago.
We are sitting at the table, and she is eating some spaghetti with a roasted sweet red pepper sauce that I make. She decided that she doesn’t like tomato sauce and she doesn’t like straight alfredo sauce, so I mix my pureed sweet roasted red peppers with a little alfredo, and she wolfs it down.
“Where are your children,” she asks.
“They live far away,” I answer. ” Where are yours?”
She looks at me and says, “I don’t know.”
I don’t know which is worse, Alzheimer’s or “old age” dementia. With Alzheimer’s you don’t realize that you’re not remembering. With dementia, you are torn apart by a sense that you can’t remember even though you want to.
I look back at my original blog, which I began in November of 2001. At that point, I was already taking care of my mom, living across the hall from her in a senior citizen apartment building. Even back then, when she wasn’t so bad yet, I was struggling to have some sort of life apart from caregiving. With each month that went by, I lost more and more of my own life.
I never thought that it would all go on for so long.
No wonder I’m burned out.

reluctant reentry

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I spent last weekend in a place as close to perfect as I’ve been in a long time. Good friends, good food, a good book, a lake, mountains, a spacious home with lots of decks, pitchers of Cosmos, and laughter-filled games of Boggle. I could have stayed there forever.
Now I’m back in the situation I should never gotten into, and I’m finalizing plans for my escape, with support from both the Hospice nurse and social worker. I would like to take my mother (92 years old and demented) with me, where we would be with our extended family in a home with beautiful gardens on a dead end street with lots of neighbors. She would have pleasant distractions from the painful movements of her body and mind. I would bring in the help we both need.
But my brother doesn’t want to let her go. And I just can’t stay.
As my hair grows gray, I need to spend more time in places of peace.
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the lone crow

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For the first time ever, I see a lone crow wandering around the area of the bird feeders. At first I wonder if it’s a grackle, but a quick look in the Audobon bird book confirms that, indeed, it is a crow.
I leave tomorrow to join family and friends for my late once-husband’s remembrance party. A lone crow, and thoughts of death.
My mother is now losing her hair. Her digestive system is screwed up. She is always afraid, never satisfied or happy, constantly restless.
I watch the crow march back and forth across the small area where squirrels and doves are pecking at what the finches and cardinals have accidentally tossed their way. He doesn’t seem to be eating. He looks like he’s checking things out.
Is he wondering “Is this the place?”

roses

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I woke to the smell of roses today, but there are no roses anywhere around here. I smelled them in the garage, too, when I went to take out the garbage.
My father loved roses. His wake was full of them.
My mother barely woke up this morning. Her mouth hung slack, her words slurred. She took a few bites of french toast, a few sips of her fake coffee, and now she’s back in bed. I wonder if she’s smelling roses.

down but not out yet

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What is my problem!!
The sun is out, my seedlings are thriving, I’m taking my 60 milligrams of happy pill every day, we have hospice available (including a social worker for moral support), and my mom is still sleeping a lot.
I should be feeling a whole lot better than I do. I shouldn’t be feeling this “stuck.” I should have more energy.
Maybe I have spring fever. Maybe it’s the just-past full moon. Maybe the loss is greater than I thought.

Elevator
Jim Culleny
Be still in a field of
slowly falling snow
and renounce focus
Peer into the distance
to where the hare
hunkers under a log
and the coy dog
waits for it to move
Let a billion dropping flakes
inundate your vision
unselfconsciously
and find yourself rising,
taking the forest with you,
taking it all,
riding the snow-snuffed
woods into a gray sky,
levitating at the pace
of cool, languid
precipitation,
rising gently weightless
with pine and spruce
and the white-clad carcasses
of busted oak and ash
and every crystal-buried
stalk of undergrowth,
—the graygreen scales of lichen,
the silent future of mushrooms
underneath awaiting
the blessed touch
of damp and sun,
take with you the lights
of a distant house
and the wisps that unwind
from its chimney
like tendrils of love
of a blazing heart,
find yourself rising
unfettered as a hawk on a thermal
a dandelion tuft on a whistled breath
a balloon let loose from the grip of a child
ride upward,
easy,
weightless as a well-lived
soul


The above from one of Jim Culleny’s daily poetry emails.

is that the way it was done?

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Is that the way it was done before nursing homes and hospices, before miracle drugs and transplants, when old folks died slowly at home, their sons and daughters and grandchildren and cousins all taking turns taking care? The frail old ones, dying only from the final stresses of age and gravity, moved slowly and silently, sleeping through most of those last months, last weeks, last days. Relatives came and went, stayed and shared, while the old ones slept and dreamed and waited, and that was the way it was finally done.
But there are only two of us here to keep watch, to take care. Each day she is more tired, asks to sleep more and more often. Awake, she sits sad and silent, eating slowly in front of the television that she can barely hear anyway. I sometimes still hold her and dance with her late at night, when she’s afraid and won’t sleep. Sometimes I sleep with her to make her feel safe. Sometimes, no matter what we do, she’s up and down all night, wants to eat, wants to go home. “Please, please,” she mutters, unable to tell me what exactly would please her.
Someone cracked my rear passenger side bumper, and I have to go and get an estimate so that I can get it fixed. But then what. My brother would have to get my mother in his car and come with me to drop off (and then pick up) my car from the body shop. It is hard to believe that we know no one around here who can help with that chore so that we wouldn’t have to put my mother through that. I don’t even think that there are taxis in this little town. At least I’ve never seen any. I think I’d better start checking that out.
This is not the way it’s supposed to be done — without friends, without extended family, without a support system. But this is the way my brother insists, and I am too tired to argue any more.
I’d better check the phone book for taxi services.
And I’m still purging and packing and planning. While I cook, and feed, and clean, and sit, and hold, and hope.
ADDENDUM:
Whaddya know. There IS a taxi service right in town! Family or friends would be better, but I’ll settle for a taxi when it comes to getting my car fixed.

signs

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When she flutters her hands in front of her nose, I know that she needs a Kleenex (well, we use Puffs because they’re softer on her nose). When she taps her teeth, I know that she wants her flosser. When she reaches out with her right hand and opens and closes her fist, I know that she wants her cane.
She doesn’t always use her self-devised sign language, but she’s tending to do it more often — especially when she’s tired. And she seems to be tired more and more. The signs are often there. The words are often not.
On a sunny day last week, when I got into my car to go to the drug store, I flipped down the visor mirror to check for any stray chin hairs that my Tweeze might have missed. No chin hair — but what’s that??? Long white hairs in my eyebrows??? Now there’s a sign. Definitely a sign.
I’m not sleeping well, my reflux is acting up, and that contact dermatitis I get on my elbow every once in a while is itching like crazy. I can’t ignore the signs.
Signs that I need a break. I need a couple of days away from here. And so I’m going to my daughter’s from Sunday to Tuesday. It’s my birthday present to myself.
In two years I’ll be 70. It just doesn’t seem real to me.
Maybe it will seem real when my natural hair color finally grows in. Then I will see the most obvious of all signs — the gray signs of being where I am in life.
Each year, on my birthday, I take a photo of myself. Each year, the signs are more obvious — the drooping jaw, the sagging chin. There won’t be much of the gray hair visible when I take this year’s photo. But next year, there will be no denying that sign of this life fading to pale.
If I were able to live my life at the age I am today in the way I would prefer, I wouldn’t be obsessing so much on my age and what I am losing with each day that passes.
But here I am, watching for signs and missing those times when the only sign I looked for was the one that said “dancing until 2 a.m.”

walking widdershins

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Sometimes, if my mother naps in the afternoon, I try to get outside a walk a bit. Only I can’t go out of earshot, because if she wakes up and can’t find me, she’ll spiral down into one of her dementia episodes.
So, like a prisoner let out into the prison yard, I walk in circles around the open area outside the front of the house. I go out in between snowstorms, when most of the snow has melted. I leave my footprints in the mud of now, rather than in the sands of time.
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I find that I prefer to walk “widdershins,” which is, in the rituals of myth and magic, counter clockwise. And which, if done while chanting an incantation, is supposed to generate productive energy.
What should I chant, I think, as I pace around my imprisoned yard. “Freedom!” If only.
Meanwhile, it’s March and there’s still a good deal of snow on the ground. Inside, the seeds I planted have already sprouted. I thought it would take a month. Now I have to transplant them all into pots and figure out where to put them. The windowsill is not an option. The cold radiating in would wipe out the whole crop. Sometimes my timing really sucks.

this manic mama

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Not, not me. My mom.
When she’s on her 16 hours-awake binge, she talks in rapid fire nonsense, can’t stop moving. If I can get her to sit down and eat anything, her foot taps on the floor like an idling motor, just waiting for the gas pedal to be depressed.
She opens drawers, moves her belongings around so that, later, I can never find what it is she decides she wants. She bends over and roots around in the bottom of her closet, packing and unpacking her shoes into a duffel bag. When she stands up, she’s on the verge of falling over. Her back hurts. Her arm hurts. But I can’t get her to stop. She is driven by her dementia.
Sometimes she will sit long enough to eat something, sometimes not. She rants about people stealing her money, her shoes, her dishes. It doesn’t help that I show her the shoes, the money, the clothes. She is beyond reason. The world is dangerous and deceptive as far as she is concerned. She refuses to take any of her meds, and that only makes things worse. Eventually, she will collapse and sleep.
After sleeping away most of the past few days, she again started in with her manic behavior this morning. I slipped her med into her mouth (it dissolves on her tongue) and in fifteen minutes she had calmed down enough to have some of her fake coffee and toast.
And then she went back to sleep and is still sleeping.
She says she always feels cold, even under her electric blanket.
There is so much I should be doing to clean up my own space, to keep on with the purging of stuff. Instead, I shuffle around, waiting for the electric eye alarm to go off to let me know that she is up.
I am not used to living in such personal stasis. I have always courted change, created it if necessary. Here, my days are caught up in the cycles of her dementia.
In slow motion, I plant seeds, shred mounds of old paper files, watch my hair grow out gray. If I can just keep moving forward in these small steps, keep making small changes, I will survive.
I sure can use some of her manic energy.

sun and moon and seeds

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I’ve been trying to find the time to plant the seeds I want to grow for my planter garden this spring. (No more dig-in-the-earth garden, where pests of all sizes devoured what I had last year.)
The sunny day seemed auspicious for planting, so I got out my supplies and got to it.
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I planted seeds for flowers that might not be too tasty to the critters who munched and lunched here all last summer. Mostly, I planted ornamental hot pepper plants — colorful fruit and foliage, and inedible by, or unappetizingly firey to, any living creature. But they sure do look pretty in pots.
Perhaps the full lunar eclipse tonight will also mean that it is an auspicious time for planting seeds. I guess I will find out in a few weeks time.
Meanwhile, I hope this also is an auspicious time to open up my CPU and insert more RAM. I printed out instructions, and am ready to tackle another project I’ve been waiting to find time to do.
My mother has had a few days of either sleeping for 16 hours straight or being up for 16 hours straight. Her 92nd birthday was on Monday. On Tuesday, we had a local Polish Catholic priest over for lunch. They knew each other well back at the old parish in Yonkers. She doesn’t remember him. But he remembers her and tried to talk to her about the old days. She sat and listened, and the only thing she seemed to be able to say was “How long have you been here?”
She is growing smaller and lighter, a drying pod waiting to fall.
Over in the corner, seeds wait to wake.
Now I will go out and watch the eclipse.
Then I will tackle the RAM.
Auspicious days are too few.