As I spend time trying to engage folks at the assisted living center and small memory impaired community, I notice that those using walkers seem to need a handy place to keep tissues, cough drops, and other small items. This seems especially true for the women; men seem to just load up their pants pockets.
So, my new project is designing and making “walker purses.”
An online search for “walker bags” turns up all kinds and sizes, even some hand made. One of the women in the memory impaired unit has a beautiful quilted one, which must have cost close to $40.
I like combining yarn and fabric, so I made a couple of samples that I’m going to ask some of the women to try and and let me know if they find them useful. If they do, maybe I’ll make more and try to sell them through the facility’s gift shop or online.
Like all walker bags, mine loop over the front bar, providing an accessible pouch for a few necessities. They are 10 inches wide and 6 inches deep, are lined with the fabric trim, and are fastened with velcro. I’m wondering if I need to add a zipper along the top — although that would be a lot more work and would therefore make them more expensive.
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.
I moved into this town two years ago after a decade of taking care of my mom. It took me about a year to get over the stress and tension of living with my (demented) mother and (set-in-his-ways) brother for several years. And then my mother passed away.
For a year after that, until now, I have been trying to find a place for myself in this larger community. I joined a gym but found it all very depressing (and expensive). I joined a quilting group, figuring that I like to sew and might enjoy it. But I didn’t for all kinds of reasons, including that I have neither the space where I live nor the design talent and experience to get into quilting. And I find it boring to quilt from a kit.
So, I did more knitting to keep me busy, but that didn’t fill my need for community connection. I tried a couple of book clubs, but they never talked about the books and I didn’t quite fit in with the memberships.
So, I joined the Jewish Community Center, mostly for the Zumba and aerobics and gym facilities, and that helped to get me out of the house. But it still wasn’t what I was hoping to find. The JCC offers some other programs that I might have taken, but they were all at night (and I don’t drive at night) and cost more than I can afford.
So, I joined up to be a Hospice volunteer, got trained, and just met my first assignment. That was a start, but not exactly to the point.
What I miss from my old life are the people with whom I worked and the groups to which I belonged in which I took some leadership. Some were peer discussion groups; some were expressive arts therapy groups. They were groups that dealt with substantive personal issues and opened doors to creative and spiritual exploration (even though I am an atheist). I always made friends with people in those groups because we had those interests in common.
So, I went on a search for a group — preferably a therapeutic group dealing with elder issues or major life transitions.
Uh uh. No such thing. Not even within a 25 mile drive.
So, I drafted a proposal to start such a group under the auspices of the Jewish Community Center, and, since I am a trained study circle facilitator, I volunteered to lead such a group.
I’ve done that before — started a group to which I wanted to belong. It has worked in the past for me, and I’m hoping it will work again.
If it doesn’t, with the SAD season starting, I’m going to find it tough to muddle on through.
I have a unique relationship with death. My father was an undertaker, and we lived in an apartment above his business. Contemplating death and dying — my own and others’ — has been a part of my life since childhood. I have sat vigil during the hours and days of the deaths of both of my parents. At the age of 71, I am closing in on my final years. I have no control over when or why I will die; but I am learning about the choices I have about “how”.
During the intense training that I had to undergo, I learned about my role and responsibilities as part of a hospice team and examined my reasons for choosing this kind of volunteer service. I found that the experiences that Keyssar shares in her book take whatever personal motivations I have for becoming — in her words –“a midwife to the dying” and draws them into an even greater context of compassionate and cosmic significance. As part of her stories, Keyssar reiterates the point that it doesn’t matter what one believe about an “after-life;” the focus of her message is to live fully while embracing the fact that we, after all, are all “terminal.”
At the end of her book, she provides a list definitions, internet links, and bibliographical references if the reader chooses to further explore the range of information available about compassionate care during the final stages of life.
The final chapter in Keyssar’s book is a poetic Epilogue (see below) that captures the intent and the spirit of the mission of those who choose to honor and celebrate the final, fleeting days (and sometimes months and years) of a human life by becoming part of a palliative care and/or hospice team.
Job description For Any Member of a Palliative Care Team
I am here to witness
the sacred hearts
whose loved ones die in their arms,
in the homes, in their beds, in hospitals or other places.
Peacefully, nor not.
I am her to witness
the sanctity of human life
as the spirit is released from the temple
to join once again, with the invisible cellular infinity
of the Universe,
the mitochondria of the Milky Way,
becoming energy to light the stars,
since we know —
the energy we manifest as a particular human being,
like any other,
can neither be created
God, by any other name by any name, by many names,
by no name,
I am here to witness
as it enters the body
and exits for the last time.
The miracle of birth.
The miracle of death.
The miracle of each moment in between:
the infusing of consciousness
into each and every cell
enduring every moment
we are here
I am here to witness
to know that Love is eternal.
to share this blessing
and to perform any other duties
Last Acts of Kindness is a book that should be read by everyone who expects some day to die.
It was 104 degrees in the parking lot outside of my doctor’s office this afternoon. I parked near the door to make sure that I only had to walk a few steps from my air conditioned car to the air conditioned office. The older I get, the more such heat really bothers me.
And, am I ever glad that, when I used up every last cent I had to build onto my daughter’s house so that I could move in and have my own space, I was able to include putting in central air. It’s been a life saver all this week as the temps have consistently risen along the east coast. I’ve only gone out of the house to get into the car and run errands at other air conditioned venues.
Spending so much time in the house has motivated me to do some cooking (chicken cacciatore tonight), work on my no-pattern sweater that’s knitted in sections of mitered garter stitch, begin making a special banner for my college class’ 50th reunion this fall, and do a few exercises on my wii.
I’m making a concerted effort to improve my physical condition. I’ve weaned myself off the anti-depressant I’ve been on for several decades, and I’m working on doing the same thing with my Nexium prescription. It’s a very slow process, getting off any kind of long-term meds, but it can be done without major withdrawl effects. To help getting off the Nexium, I’ve halved my dosage and started also taking digestive enzymes and probiotics. It will take me months of slowly tapering off before I’m ready to leave the meds behind. There are some horror stories on the net about rebound effects from stopping too soon. Patience and persistence, I tell myself.
I need to repeat that phrase often these days as I begin trying to lose some weight. My sciatica is acting up even though I do the prescribed stretching exercises several times a day. Carrying around fewer pounds should make some difference in that condition, as well as my always-high cholesterol levels. Patience and persistence.
On Monday I’m going to join the nearby Jewish Community Center so that I can join some exercise classes and participate in some social activities (i.e. book club). The membership is cheaper than any health club and it’s got better facilities and programs than any health club I’ve ever seen. This “identity crisis” in which I have been foundering (after 10 years of focusing on caregiving my mom) is slowly abating. Patience and persistence. And a really good therapist.
If groundhog is your power animal it is time to explore
alternative states of consciousness.
Pay attention to your dreams and try meditation.
Study a specific subject or area of interest.
Take up a Yoga class and learn to relax.
Dig beyond the surface to get to the truth of important issues.
I did a little online research and learned that it’s possible to tame woodchucks/groundhogs. I wonder if I could tame our resident one enough to let me pet her (I assume it’s a her because she’s got a little one following her around and males leave soon after the babies are born).
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
* 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.
…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.
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.
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:
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.
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.
Every day, a fat seagull spends the afternoon sitting on the roof outside my mother’s hospital window. A nurse told me that, several years ago, a woman staying in the room next to my mother’s would leave some of her food outside her window for the birds. This last one is still hoping.
My brother thinks that my mother could beat the odds and become aware and pain-free enough to go home to live out the rest of her hours (or days). He wants a miracle.
This morning her blood pressure dropped and her pulse quickened. By her bedside, I sit and watch the read-outs for the meds that are keeping her comfortable and pain-free. It’s all about the numbers.
It’s all about numbers.
“You can never know for sure,” the doctor tells me this morning when I ask him how long she might have. The turbaned doctor is very kind, compassionate. Even his handshake is gentle. He is angelically patient as he answers the endless questions that my brother has in hopes of being able to have my mother wake up and see him one last time — see him so that he can say goodbye. When I am not angry at him I see that his constant arguing is a way to keep himself from feeling overwhelming grief.
I tell my brother about an “Allie McBeal” episode I remember in which an elderly dying woman on a sedative wakes up and asks to be put back on the sedative — because, while sedated, she is having an extended dream that she is living her young life, that she is young and alive instead of old and dying.
I ask my brother if it might be that my sedated mother is dreaming she is young again instead of old and dying. His answer is that maybe she’s not.
In reverie or not, I don’t want her disturbed. He wants a miracle.
It’s all about numbers: 94, 88/55, 1mm, one or two days. I watch the second hand move around the clock. I count her breaths — 18 a minute.