I can’t find my keys

Really, I can’t find my set of keys that hold, not only my car and house keys, but all of those little tags they give you with bar codes that give you special privileges — like discounts at the food market, drugstore, and gas station. It also had my library card on the ring. And a tag that gives my phone number in case the keys are found.

Since I haven’t gotten any calls, I assume that the keys are somewhere in the house. I keep looking. For all I know, they fell into the trash at some point.

There is a place to hang our rings of keys right by the front door when we come in. But I forget to do that.

When I was my mother’s caregiver, and dementia caused her to hide stuff all over the place, I bought a set of key finders and attached them to her keys and her wallet. I would press the remote and the beeping would lead me to the lost article — sometimes tucked in the corner of her pillow case, sometimes in a purse at the bottom of her closet, sometimes under the mattress. Once in the refrigerator.

So I just bought a set of key finders for myself and attached one to my spare set of keys. But I don’t have all of those tags, and now I have to replace them all. I have one “key” finder that can be stuck to the back of something like the tv remote. I think I’ll stick on the back of my iPhone, since that’s the other thing I keep misplacing.

It’s bad enough that, more and more often, I can’t find the word I want to complete my thought. Now it’s my keys that get lost. What’s next? Me?

It’s no Eden.

A volunteering moment: A memory-impaired nonagenarian pats me on the butt. I just ignore it, since earlier today, for the first time, he actually conversed with me and willingly participated in a group activity. I can’t save the world, but today I make a sad old man smile.

Twice a week I volunteer at a geriatric facility that includes folks in assisted living (where I lead “Trivia” and other such group sessions) and a separate space for individuals who are memory-impaired (with whom I sing songs, share photographs and stories, go out for walks, and even play kids’ games). I think doing these things is my way of compensating for the fact that so much of this world is in such a large scale mess that I have no power to affect any of it in any positive way.

I don’t have the money to contribute to saving abused animals, abused environments, and abused people; listening to Sara McLachlan sing in the ASPCA commercial only makes my distress worse, so I avoid even doing that.

Instead of feeling overwhelmed by all of the horrors of the “big picture,” I cut out a piece of the “little picture” that I might be able make a little better. Maybe this geriatric facility is not the worse place in the world for elders to find themselves, but it’s no Eden, either. However, it is a place where I can make a difference without the effort impacting me in a negative way.

As a matter of fact, I’m always surprised at how much of the time I spend with these folks that I actually enjoy. Sometimes I even get inspired in crafty ways that I’d never expect.

For example, I noticed one woman had a really pretty quilted pouch attached to the front of her walker. It’s just big enough to hold some tissues, a few photos, and a pair of glasses. You can buy similar ones online for about $35. It’s a handy little item that I realized other women who use walkers would find helpful. So, I’ve been inspired to design my own version that combines crochet and fabric. Maybe I’ll try to sell them online. Maybe I’ll just give them as gifts. Either way, I now have the kind of creatively useful project that I like to work on at home as I sit around in the evening and watch escapist television.

In her post today on Time Goes By, Ronni Bennett confesses to having become a “cowardly” about dealing with the overwhelming problems in the world around her. She says:

Confronted with calamity – personal, private or global – I have always been strong, eager to understand and self-confident in my ability to do my best to help when I can and pass the word on to others who might have more resources than I.

Now, I’ve become a coward. If I cannot look at the photos, will not read the news stories, won’t listen to the appeals for starving children and abused animals, how can I possibly be part of any solution.

In a real way, it’s my similar cowardice that has led me to volunteer where I do. I can feel I’m helping to make the lives of at least a very small part of the human population a little better, in only three or four hours a week. And, as it turns out (as it so often does when you give of yourself), I get back unexpected appreciation and inspiration.

Although I can do without the nonagenarian’s pat on the butt.

thinking of my mother on father’s day

It’s Father’s Day tomorrow, and I’ll think about him then.

But today I’m thinking about my mother because we find ourselves in East Sandwich MA driving along roads that we drove with her a dozen or so years ago when I took her on the last vacation she had.

When I rented the house we are now in (for this week), I had forgotten that we all had been out this way before, before dementia took my mother away into her own world.

It was my son-in-law who recognized familiar sites — the place we had gone several times for ice cream; the miniature golf course where my mom actually did very well for a little old woman in her 80s. And then I remembered, too — taking her into Hyannis to shop, taking her on a nature walk through some strange grove of bamboo that also served as exhibit space for even stranger sculptures. She had time to sit and laugh with her granddaughter and grandson-in-law. It was a good time for all of us.

I think of her now after we walked on the beach this evening — my daughter, her husband, and the soon-to-be nine-year old.

Someday, after I’m gone, I hope that they will smile when they remember this vacation with me — despite my limping along with a bout of vacation-annoying sciatica.

I am thinking of my mom today and wishing that I had been able to giver her more chances to enjoy her family while she was still able to enjoy them.

I am looking forward to this week of relaxation and adventure with my family. (Even the drive out with several stops to ease my grandson’s car-ride queasiness was part of the adventure.) There are plans to go to Plymouth and make other day trips around the Cape. Chances are, however, unless my sacroiliac calms down, I might just sit on the deck and read.

After all, I’m on vacation, and Cape Cod Bay is just the perfect place to be.

floating into February


This is the kind of day for skiing or snowshoeing or snow-fort building. But I don’t do any of them. I can’t seem to even walk very far these days.

But today, with the sky a clear blue and a sun that has finally left the falling snow behind, I bundle up and get myself outside for the first time in weeks. I take a short walk around a few blocks — just about as much as my joints can take today.

When I come back to the house, I haul out a stool and sit on the small porch. I close my eyes. For a moment I am back in my babyhood carriage — the old kind from the 40s, with an oil cloth cover that rolls up to my chin, so that I am warm and snuggly inside, even though my nose is cold. The sun is warm and bright on my closed eyelids. I want to be a child again.

I think of my mother — how young and happy she was when she pushed me in that carriage — how disappointment and dementia drained from her spirit what was the best of her. I think of her because her 95th birthday would have been this month; she would have made it had she lived for three more months. But it’s just as well that she didn’t; those months would have only extended her hell on earth.

I could sit here all day, pretending. But I have a math challenge to confront — figuring out how to use a sweater pattern I like but using a different weight yarn and different size needles. It’s all algebra, but math-challenged that I am, I have to work myself up to grappling with setting up the equations. I can’t seem to keep my body in shape, but I try to do so with my brain.

I do have to deal with my body, though, despite the back problems. I’m hoping I can try the “chair yoga” this week at the senior center in town — that is if it’s not canceled again because of a another snow storm. And I’ve begun firing up my wii around 4 p.m. every day just to do some balance and aerobic exercises, which I seem to sorely need.

We are all waiting for spring. But for today, I’ll take the sun on snow.

a year to pay attention

This is the year for me to really start paying attention.

Creativity emerges from paying attention. Problem solving requires paying attention. Connections thrive on paying attention.

Until the middle of November, my mother’s fatal dementia, by necessity, was the focus of my attention for the past decade. It feels strange, in a way, not to feel that pull any more — to have no excuse for not paying attention.

Writing well depends upon paying attention.

And so I begin here, tomorrow, participating in a month long project, A River of Stones.

A small stone is a polished moment of paying proper attention, and the challenge of the project is to write a small stone every day.

I will start tomorrow. One small stone. And, stone upon stone, I will try to set a solid path out of the stress and sorrow of the last decade and into a more focused future.

________________________

I was starting to feel guilty about not posting frequently enough on this blog. Then I read what my son wrote on Twitter about his blog:

I write for me, and then stop writing for me. Anyone who reads in the meantime? Cool.

the chalice of pain

This is my response to Magpie Tales’ visual writing prompt #42. You can find the responses of others by going here.

The Chalice of Pain

Father, if it is possible, let this chalice pass from me! Father, all things are possible to thee, remove this chalice from me!

Pain. We all feel pain. We all would rather not feel pain, and those in pain usually can let you know where it hurts and how badly it hurts.

Except if they have dementia.

There is a false assumption that those with dementia don’t feel pain because they often can’t articulate that fact in ways that are obvious — especially with words.

From “Pain and Dementia,” referenced above:

Over time your family member may lose the ability to speak or may not make sense when they do. Therefore, it is very important to be able to recognize behaviours or actions that indicate pain. Some of these pain-related behaviours include the following:
* frowning, grimacing, crying
* swearing, moaning, calling out, noisy breathing
* fidgeting, pacing, rigid posture
* guarding an area of their body, not wanting to move
* hitting or striking out
* withdrawing or resisting when someone is helping with personal care
* refusing food
* change in appetite, rest periods, or sleep patterns
* increased confusion, crankiness, or distress

From “Behavioural Changes”:

* Sudden changes in behaviour are important to recognize as these are often the only clue that an older person is sick, getting worse in their dementia, becoming depressed, or having a side effect from a new medication.
* Attention to your family member’s behavioural and psychological symptoms are key to improving and maintaining their quality of life.

A recent PBS Frontline program, “Facing Death,” documented the pain suffered by both family (emotional pain) and those dying from dementia and other illnesses (both emotional and physical pain.) You can watch the program at the above link. Also of great insight are the comments left by viewers.

From “What happens when elderly people die?”

…fewer than one in five people can have a peaceful end, since ‘dying is a messy business’ for which relatives are unprepared. He continues: ‘Too often, patients and their families cherish expectations that cannot be met, with the result that death is made all the more difficult by frustration and disappointment with a medical community that may be able to do no better.’

Relatives who expect aware deaths may become angry and turn their anger onto doctors and nurses when death takes other forms. Dying people often need psychosocial support, but the potential for introducing this occurs only when the dying phase is identified. This is not always possible in trajectories 2 and 3….. [2) long-term disability with periodic exacerbations and unpredictable timing of death that characterize dying with chronic organ or system failures (some cancers that respond to treatment and then relapse come into this category); (3) self-care deficits and a slowly dwindling course to death from dementia.]

After watching the Frontline program and hearing how the doctors explain the options to the families of dying patients, it seems to me that there needs to be more honesty from the medical profession about the dying process, its inevitability, and the benefits to the dying of making those patients as pain-free as possible.

Maybe, because I grew up above a funeral parlor operated by my father, a funeral director – maybe, because I sat at my father’s bedside while it took days for him to die of cancer (his mind was alert and he chose to die at home with a certain amount of pain) – maybe because I survived the excruciating pain of a breech birth and thought I had died and now I’m not afraid to die – I feel strongly that, when death is close at hand, it should be welcomed as a relief from pain and that pain (for example, of old organs failing, of agitated dementia) should be aided by pain-relief medication.

On my bookshelf is “Final Exit,” which I bought a long time ago out of curiosity about peaceful “self-deliverance” when my time comes, especially if that time comes riddled with pain.

But it becomes a lot more complicated if a form of dementia has stolen my ability to communicate my pain and my wishes. My daughter knows that I’d rather die in peace than die in pain.

In the story of the Garden of Olives, even Jesus pleaded for the chalice of pain to be taken from him. No one wants pain, although we often are willing to bear with a certain amount of it if it’s going to get better. But the pain of dying does not get better.

Somehow we need to be educated about that fact so that we hold the best pain-free interests of our dying relatives in mind.

Remembering Bronislawa

My mother’s name was really Bronislawa, which doesn’t have an English equivalent. So they called her Blanche.

Her dementia took over all of our lives for the past decade. Now that she is gone, my mind has cleared enough to remember her as she was before.

She was born in America but spent 8 years in Poland with her mother and siblings between the World Wars, when she was a pre-teen. Her father stayed behind to keep earning money, and the rest of the family went to live on the family farm in Poland. She was bi-lingual. She was the oldest of three sisters. She never graduated from high school. She had two brothers. None of her siblings is alive.

This is her and her mother and sisters when they returned from Poland to live in Yonkers.

At the age of 16, she went to work in the Alexander Smith and Sons carpet factory. Her family struggled financially, so they all had jobs. She often recalled that her father had to wrap her arms with ace-type bandages because they would be so sore after a day of work. Until the day she died, she had an indentation in her right forefinger, which she said was caused by the thread she had to wind around her finger day after day.

She was always slim and petite. And pretty. Not beautiful or striking. Pretty. He was handsome. “All the girls were after him,” she often said, “but he picked me.”

This is her and my dad when they got engaged.

She also was a great social dancer and, of course, loved to polka. For many years she danced in a local Polish dance troupe. That’s her, on the left, and one of her best friends, who is still alive and who attended her funeral.

Even toward the end of her life, when she pretty much stopped speaking and walking, my mom would follow my lead in the fox trot and waltz if I held her close to me. She loved music. Loved to dance.

She also liked to sew. When I was a child, before every Christmas, all of my dolls would disappear for a day or two and then show up on Christmas Day all decked out in new dresses that my mother made for them. She liked her clothes to fit well, and she was always sewing them in, letting them out, hemming and correcting. I have that same tendency. She taught me to knit, crochet, and embroider, although she never really spent much time doing those things. Mostly, she was the full-time wife and mother and much-loved member of a group of Polish/American women who played Canasta once a week and socialized, family-style, other times.

I lost count of the visitors at her wake who said to me “She was a real lady.” Proper behavior and stylish clothes were important, and she bought the most fashionable shoes, which for many years had very pointy toes. She liked pumps and bought them narrow so that they would stay on her feet. Her toes suffered for that vanity, and when she got older, it was hard to find shoes that were comfortable.

She chose the suit and blouse that she wanted to be buried in more than a decade before the event — and with pearls around her neck and in her ears, she looked like a VIP, which, to many, she was.

Her portrait, for which she posed to have painted in the 1950s at my father’s request, still hangs in my brother’s house.

The Deathwatch Diary (Final)

My mom is gone. She died peacefully 11 hours after she was taken off the morphine drip as a result of my brother’s insistence. She never woke up. I guess our collective magic worked. Or maybe it was just that her time had finally come.

I have gone back with my brother to his house to get her clothes ready and find her rosary. Tomorrow I will go and stay with friends in Albany until the funeral later this week in Yonkers, where our family is buried.

My brother will finalize the funeral arrangements. I am tired of getting into arguments with him.

I write this clumsily on my iPhone because my brother has disconnected his wifi that I use for my netbook because he doesn’t want me blogging. Well, isn’t that just too bad.

He is already harassing me about crumbs on the floor and too many lights on. I thought my mother’s death might diffuse his nastiness toward me. Wrong, again.

But I will get through this and then go home. And not come back.

The Deathwatch Diary (Four)

Atheist though I am, I still marvel at the awesomeness of synchronicities.

All afternoon today, as I cried and blogged and cursed, and my brother argued, and my mother lay still and panting in her hospital bed, the fat gull flew and strutted around the roof outside my mother’s window, screeching, The sound was like fingernails on a blackboard. There was no ignoring it.
So, I googled “seagull totem” and found this, which I share here:

Spiritual Messengers

Sea Gulls are messengers from the gods, especially ancient Celtic deities.

They bridge the gap between the living world and the spirit world.

Opening yourself to their energy enables you to communicate with the other side.

Sea Gull can also give you the ability to soar above your problems

and see things from above. Seeing all the different viewpoints.

Better than any fortune cookie.

And then, went I went outside to get another book from my car, I found the item in the photo below in my book bag, and I hung it on the rack on my mother’s bed that is supposed to hold IV bags.

It’s the talking stick that I and my five women friends jointly and ritually made from a root, stones, feathers, ribbon, yarn, thread, spangles, and even a golf tee. Crone magic of a very special kind.

My daughter chants to set my mother’s spirit free. And I embrace roots and wings for my own spiritual sustenance.

Such everyday magic, these synchronicities.

The Deathwatch Diary (Three)

Go here for Deathwatch Diary (One)
Go here for Deathwatch Diary (Two)

I should have known that it would be a bad omen to take the book, above, to read while sitting through the deathwatch.

Bad things did happen. My brother bullied his way into making me the obstructionist in reaching an agreement on the care my mother will get in her final hours. With pressure on me from more than a half-dozen hospital staff, he had her taken off the morphine drip. I finally gave in, provided that the nurses can put her back on if she demonstrates distress. The problem is that my brother interprets her distress as “feistiness.” I can only hope that she is so far gone that her brain is dead and will not relay pain messages to her nerves.

It remains to be seen whether the nurses will, indeed, put her back on if she looks like she needs it. Or will my brother bully them into folding to his interpretations.

Let this be a lesson to all who delegate health care proxies and power of attorneys. Choose carefully. Choose someone who doesn’t have his/her own agenda for how your long life ends — which should be neither bang nor whimper, but rather a peaceful slide into oblivion. Or wherever.

Yes, I’m pissed at the staff here, who let him do the wrong thing for the wrong reason. I’m pissed at myself that, with little sleep for 48 hours, I folded under pressure.

This is about me, and I’m not done yet.