AFTER ALZHEIMER’S — WHAT AM I GOING TO DO NOW?
June 1 2012 — Good question. As a caregiver, you can wonder what will happen after Alzheimer’s, Parkinson’s, Lewy Body dementia, MS, cancer and a host of other awful dementia-type diseases that are, in most cases, terminal. Spouses, lovers and family members become caregivers, and often caregivers become shadows of their former selves. Not to be dreary – that isn’t my intent. It’s just that as caregivers we are duty bound, and love bound to our patients and responsibilities filling our every minute with something to do: constant busyness – an observation to be given considerable thought.
THE RAT RACE
It’s a rat race not only out there, but in here as well, and caregivers are the runners. As a spouse you soon become aware of how much the other spouse did in this partnership, and now you’re accountable for doing it all. Coming, going, rushing in every which direction to get it done and still there is more to do. Each day ends in exhaustion: physical, emotional – most of the time both — but before you can drop into bed you must make one more check to ensure your patient is all right: covered, comfortable and asleep.
THE ENDING
Then one day it’s all over. It’s inevitable and we are prepared. Well, sort of prepared. I doubt that anyone is truly prepared for the final curtain of life. Our patient goes into a different realm; one we believe relieves him/her of everything that brings about suffering. The house is filled with friends, family, a funeral, food, hugs and kisses, memories and musings, and finally, as quickly as they all came they are gone. All alone the survivor, the caregiver spouse asks, “What am I going to do now?”
DIFFERENT, BUT THE SAME
My sister Janet’s husband Douglas lived with cancer for several years before her patient died. She was his caregiver with Hospice helping near the end, even telling Janet the day he would pass. Douglas had chosen cremation and she chose to have a remembrance for him later in the summer with his son scattering Doug’s ashes from high on a mountain top. At his passing I flew to be with her in Washington State hoping to help curb that first loneliness. They lived by the sea and in March it was stormy and cold. For a week we were truly sisters again – almost like being young — walking the beach in the wind and on sunny days just wandering through town. In the evening we would build a fire in the fireplace shutting out the weather and warming our hearts as we reminisced. It was cozy, except that Douglas was missing. On the last night before I left she cried, sobbing with the grief that comes with acceptance. It was the first real emotion she had shown since my arrival, and then she asked, “What am I going to do now?”
Over lunch my friend Madalyn and I sat catching up on family and what might be new in our lives. Suddenly, I looked at my friend in surprise when she said, “It’s so much better now that Darwin is gone.” Darwin, of course, is her late husband, another Alzheimer’s patient, having succumbed to the disease several years ago. She and I have traveled the AD road for a long time. Even now, though her journey is over we have so much in common and much to discuss.
Madalyn and Darwin were in love forever, still holding hands, still affectionate, still touching, talking and laughing – soul mates – I suppose. Unlike Ken, Darwin with his AD always recognized his wife. So I was speechless on hearing her remark? Seeing my expression she laughed and said, “And that’s the biggest lie I have ever told.” Relieved I laughed with her as we continued to talk about the difference between the perpetual mourning of Alzheimer’s and the mourning when a spouse passes beginning with the question, “What am I going to do now?”
As a caregiver I’m certainly not one to stand in judgment of decisions made by other caregivers. I don’t wear their shoes. Albert, a dear man I had met a few times, was more Ken’s friend than mine. He has been a patient with AD for more than 11 years, each year sending him deeper and deeper into the dungeon of his decaying mind. Albert’s devoted spouse Bertha has cared for him by herself all of those years in their home. He and his care have been her life. Recently, she elected to allow Hospice to insert a feeding tube. I can’t help but wonder with concern for Bertha if she will be able to find her way back into society when Albert passes. Surely, the sunlight will be hard to find when she asks herself, “What am I going to do now?”
DOWNSIZING AND JOB LOSS
There’s something about being a caregiver especially when the patient is a spouse that makes the caregiving more unusual – and even more binding when the care is given in their home. As Ken’s caregiver, now with the help of Ben or Crizaldo, I go through our daily routine every day of the week, every week of the month and every month of the year. There is a certain monotony, but life is good. I know that one day it will all change and Ken will be gone. My job as his caregiver will be over. I will no longer be a spouse. The people frequenting my home will be downsized. Ben and Crizaldo will be looking for another position, and I will find myself asking, “What am I going to do now?”
I understand Madalyn’s feelings, and those of Janet and Bertha, those wrenching feelings of emptiness and the challenge of a new life alone, of missing husbands who were bright and funny and then missing the men who became ill. It’s almost as if we as spouses would choose to continue caring for the patient endlessly rather than face a vacant life without them. I understand because I can touch Ken, hold his hand and kiss his forehead goodnight because he’s here. Caregiving, while exhausting, gives us a degree of comfort and purpose to our lives, but we cannot be dismayed when the assignment is completed. We need to plan ahead for that time when we who are left to linger can move forward once we’ve pondered and found our own answers to the question, “What am I going to do now?”
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THE JOURNEY HOME
KEEPING VIGIL
Though death brings finality to Alzheimer's, caretaking survivors still grieve their loved ones.
May 25, 2012 — For the past few weeks the Alzheimer’s World and Community have been keeping vigil with Bob DeMarco as he waits by his mother’s side. She is 95 years old. He knows death is near. Hospice is close by and ready when he needs help. They are still at home: Dotty’s home, the same home where she kept vigil many years ago as her husband slipped away to the other side – to the light Bob explained. Now, Dotty’s devoted son, after caring for his mother as she battled Alzheimer’s for the past eight years, waits for her inevitable exit into the light. There were no options, no heroics; Dotty’s system has been shutting down, and Bob was told that it was just a matter of time. Continue reading
ALZHEIMER’S: ANOTHER WORLD AND COMMUNITY
Unusual happenings in the Alzheimer's World can be as strange as Alice's chat with the caterpillar.
May 18, 2012 — As stumbling humans we are either falling into a rabbit hole or squeezing through secret openings in the looking glass in much the same way as curious Alice in her Wonderland adventures. Traveling along this road of experience called life I doubt we’ll meet up with a talking white rabbit worried about the time, or a grinning cat, but we can learn and be gifted with a multitude of different perspectives as we venture along the way.
A DIFFERENT VANTAGE POINT
From a Ferris wheel high in the sky we are left suspended in a swinging basket to survey our first upside-down world. We may have been frightened, yet there is intrigue wondering what else is out there yet to be discovered. Leaving the airport’s solid ground we glide upward into dandelion puffs of drifting clouds, floating on currents of air into another realm, viewing the earth below as a patchwork quilt. Next? If we’re brave enough to put on a mask and air tank we can enter into the watery kingdom of fishes, other sea creatures and plant life living on, or near, the sandy beaches of the ocean’s floor; truly another world. And wasn’t Christopher Columbus, in his curiousity, led to a ”New World?” Life is a revolving door pushing us into, in front of, behind and along the edge of the mystical looking glass whether we like it or not. We are constantly moving through different worlds of learning, and while they might not be the fun and exciting places where Alice traveled, they are, nonetheless, for our experience and understanding. Continue reading
ALZHEIMER’S: WHEN THE DAUGHTER BECOMES THE MOTHER
It's a heart-rending transition, but when does it happen that the parent becomes a child and the child becomes the parent?
May 11, 2012 — There is never a set time for this exchange to happen. It’s not like turning 18 when you’re miraculously transformed into a legal adult or being 21 and you can toss the phony ID before entering certain establishments previously forbidden, nor is it anything like having that first baby when the full glory of inescapable motherhood is thrust upon you. The mother becoming the child and the child becoming the mother is an act of acceptance and compassion on the part of the child and never sought after by either adult. Furthermore, not every child has the calling, challenge or even the temperament to accept the transition. It’s a journey stumbled into as the older mother slips into a need either through old age, poor health or falls under the dreaded umbrella of dementia, which in our family is and has been Alzheimer’s disease.
SO…. WHEN?
Was it when my mother, Irene, broke a hip and the doctor forbad her climbing any more ladders. She had planned on painting the kitchen and felt frustrated at not being able to follow her schedule. To get the job done and soothe her jangled nerves my sister Janet and I painted it for her. With her strong, but recovering, body and equally sound mind it wasn’t then that Janet nor I stepped forward to become our mother’s mother-caregiver. Mom wasn’t ready. We weren’t ready either nor had the thought even passed through out minds. Perhaps it was a few years later in the car when I suddenly braked and my protective arm flew out across her chest as I had automatically done for my children before seat belts. Could that have been a beginning or was it when at 85 my mother began to lose touch with reality.
The stats tell us that if we live long enough one half of the population will have AD. In the case of my parents, the stats were right on target. My father was as sound as the dollar had been long ago, and it was he who made the decision to leave their beautiful country home in Sonoma County, California and move closer to us on the east side of San Francisco’s bay because he could see his beloved wife of nearly 65 years slipping away. “I don’t want to live with you,” he proclaimed as we searched for their new home, “We just need to be near you.”
ILLS AND BROKEN HIPS
They did well by themselves in the house nearby which was a 15-minute walk or a quick ride for Ken and me. I saw them every day and whenever Dad called which was the case one evening when the phone rang. “I think Mama broke her other hip,” he stated. Already deep into forgetting, the recovery took longer than it should and she never really regained what was lost. Previously, she and I had taken short walks through the neighborhood. No longer steady on her feet I pushed her along the same route in a wheel chair. Had I become the mother then? Or was it when I helped her get ready for bed, or pulled a comb through her tangled hair and she screamed like a young banshee, and I scolded her? Could it have been when she needed to be checked by her p.c. and I held her hand during the exam, or the time before they moved when she had a painful kidney stone and I worried about possible surgery? Was she the child and I the mother? Continue reading
MOTHER’S DAY — FILLED WITH ALZHEIMER’S AND HATE
Even in the animal kingdom, conflict exists between mothers and daughters. Photo courtsey of Tambako the Jaguar, http://www.flickr.com/photos/8070463@N03/6533105491/
CONFESSION
May 4, 2012 — Reading from the Alzheimer’s Reading Room another caregiver posed a problem to Bob DeMarco stating she was the main caregiver for her mother. Then, without hesitation, admitted she hated not only every minute of her caregiving duties, but her mother as well. She went on in her statement addressing all of the reasons for her emotions, expressing that she and mom had never gotten along, were never close, and now during this time of mom’s need the daughter was filled with resentment, anger and hatred. “Ouch,” I thought. To further compound the dreary entry I read through a long list of comments stating mostly the same thing. “Double ouch.” Continue reading
ALZHEIMER’S: JUDGING, ADVICE AND MOTHERS
April 28, 2012 — “I don’t give advice and I don’t judge,”said my friend Clement.
Advice, even for Alzheimer's caregivers, isn't worth it unless you pay something for it.
A MENTOR
Clem’s mother had been a mentor for me. She didn’t know it nor did I. It wasn’t until she was gone that I recognized the impact she had on my life. Nearer my mother’s age, but a little younger where the generation gap hadn’t felt as vast, or as a teen perhaps I wasn’t doing the distancing thing from Hertha as I was with my mom. Nevertheless, this mature woman was someone I could sit with hour upon end and bask in her wise and witty wisdom.
A stay-at-home mom with four rambunctious boys and one fragile girl, her prior career was that of a registered nurse turned stewardess, as flight attendants were called when Hertha flew the blue and friendly sky; the medical part being a requirement during the early days of national and international flights on many of the major airlines. I always wondered if “Personality Plus” was also a requirement because if anything Hertha could have been “Miss Congeniality” anywhere she went.
Hertha’s last years were not spent as a dementia victim which had been the fate of my own mother so I was a bit surprised recently when Clem winced a little recalling “being there for her” during her later widowed years. That’s when he said, “I don’t give advice and I don’t judge,” even though advice from experience was there if he wanted to share. He added how his mother had eventually moved to another state to be close to her sister and another son, Kyle. “After mom died Kyle wrote me a letter of apology and appreciation for my before years,” Clem chuckled. Continue reading
ALZHEIMER’S, HEALTH AND ANGER
Anger is a part of Alzheimer's, and is present in both caregivers and AD victims.
April 20, 2012 — Do Alzheimer’s patients get angry? Absolutely! However, I see Ken’s anger is more of a defense mechanism – a reaction to an immediate situation he can’t control: he growls, hisses, grumbles, or shouts profanity and can be combative as part of the anger he spews upon me, Ben or Crizaldo when he feels threatened or doesn’t understand what’s happening, and then it’s quickly dismissed – usually. He doesn’t hold onto it because his anger isn’t the same anger he may have felt when he was well, or even in the mild cognitive stage of his Alzheimer’s. Continue reading
ALZHEIMER’S AND BURIED TREASURES
Seeing a fushia pelargonium reminds me of precious memories lost in the tangles of Alzheimer's disease.
April 14, 2012 — The rain had been good, penetrating the earth making it pliable without too much sogginess and sticky mud. Perfect, I thought, for pulling weeds. Working out-of-doors had not been my intent when I strolled around the garden seeing spring unfold in all of its green glory. I hadn’t even brought gloves, nor had I thought of therapy for the inner me — which gardening is — and yet I found myself compelled to kneel and pull at one weed just begging to be plucked. Out it came with little effort on my part. Shaking the bits of dirt from its roots I laid it on the ground to go after another and then another. Soon both hands were busy picking and pulling the intruding plants in joyous abandonment never minding the damp earth gathering under my fingernails and etching brown particles into the creases of my hands. I thought of our friend John who so enjoyed working in his garden, “It’s good for my soul,” he would smile brushing his hands clean after hours spent digging the soil. Continue reading
AFTER ALZHEIMER’S — A PROMISE…
The return of peach blossoms each spring bring hope of new life and remembrance of things eternal.
April 7, 2012 — Perhaps Robert Browning said it best: “The year’s at the spring, and day’s at the morn…..” As the seasons continue their flow of never-ending cycles I find that it’s spring I love best. After a long and dreary winter – spring is here — filled with promises of new life and awakenings. Spring in our world slips in quietly with hints of timid greens breaking through the drab branches of our trees, and warmth fills the air turning my soul to thoughts of life in general, life after life and just a few days away is Easter – holding more promises of distant hopes and seeing loved ones long departed. My heart wants to burst with joy.
OUR FAMILY’S FIRST BRUSH WITH ALZHEIMER’S
When I most remember our parents and others who have gone before I remember the sadness we felt and think of Nick. There is always a period of adjustment when a loved one passes, and Ken’s dad was the first parent we lost. A victim of Alzheimer’s some 30-plus years ago, as I add and subtract the time between then and now, Nick was also our first experience with AD. The medical community was just getting their feet wet with dementias, hardly even knowing what to call the collective mystery. We wandered helplessly through the caring period for Nick without much advice from our doctors because there wasn’t any advice to give. Little by little we watched and worried as he slipped away from reality until it was no longer practical or safe to care for him at home. A week after placement in a care facility he died. Nor was it practical or safe for Mom to be alone in the house. She had her own problems with dementia, bladder cancer and other health issues. Following surgery and treatment for the cancer, Ken and his sister Loretta moved her in a care facility located between the two families so we could visit on a regular basis.
What remained were the house and its furnishings. In today’s world clutter experts would have called Rose a minimalist: if it wasn’t used it was gone which made dividing the remaining treasures among us and the grandchildren easy. The house would be rented with the income going to keep Mom happy and cared for in the new and sunny surroundings.
Cleaning and painting their house was easy compared to the challenge of the yards. Rose and Nick had what we considered to be the best lot on the hill. Windy at times as the salt air swept in through the Golden Gate, across the bay waters, and then up and over the hills just north of Berkeley. For a time Nick made their bit of land a showplace. Farming skills he learned as a boy in his native Yugoslavia applied to the hardened clods of dirt surrounding their new home changed the impossible to fertile ground to mold as he saw fit.
In the old country he and his father terraced the hills with cleared stones, pulverized the lumpy earth with their bare hands and added mulch to enrich the earth. In California, he followed the same pattern, and with limited city space he planted a peach tree, berry vines, grafted a variety of plums onto a “mother” tree, and established a fig tree not bigger than a stick in a side corner which grew to be enormous. For a time during their good retirement years their small spot of land flourished and became their own Eden. When Alzheimer’s came Nick forgot his garden and Rose neglected the flower beds. The wind blew, the earth became hard and dry, and the natural grasses replaced all that had been good from their labors.
With the inside of the house ready for the renter we tackled the yards pulling weeds, trimming hedges and dug some favored bulbs for remembrance. Winter was still with us; the weather cold and threatening rain, and the chores tedious and exhausting. “Let’s come back and finish on Saturday,” I suggested to Ken. He agreed and Loretta was willing to quit early so the two of us could get home before the heavy traffic.
“How’s it going,” asked my neighbor Barbara. We brought her up to speed saying we were going back on Saturday to prune some trees and finish the job. “Then it’s done,” I added feeling the relief. “You’ll be pruning trees?” she hopefully asked. “Would you save me a really gnarled branch for a decorating item I’m working on.”
A SPRING SEASON FILLED WITH SURPRISE AND PROMISE
Saturday went well and I brought Barbara her gnarled branch. “Come in and I’ll show you what I’m doing.” Stirring up a batch of plaster of Paris and water, she then scooped the white glob into a decorative brass bowl, smoothing it into a flat surface. Next my neighborhood crafter plunged the branch deep into the glistening mass holding it firm while the plaster hardened.
Scattered on a near-by table I noticed an array of blue silk blossoms and bits of greenery. “When this dries I’ll glue the flowers in place and it’s done. I’m going to put it against that blank wall in the dining room,” she explained. I was impressed having to admit the contrast between the delicate blue silk and the gnarled branch was oddly beautiful. “Come over in a few days and see the finished product,” she asked. I promised and went home to collapse into a chair before starting dinner.
With the last few rains, winter was passing and the balminess of spring was in the morning air. Looking through the window I noticed a few billowing clouds drifting overhead and thought about Nick, missing the man he was before Alzheimer’s, and understanding the loss Ken still felt. Nick would have been out working in his garden this beautiful spring day. Suddenly, the ringing of the phone broke the silence and my thoughts vanished. “Come and see my branch,” insisted Barbara joyfully, but with a sense of urgency in her voice. Obediently I hurried across the street to her house and through the open door. “Look,” she said, pointing to the gray, gnarled branch. In wonderment I was speechless. There among the blue silk flowers was one pink peach blossom. Perfect in every way and filled with life. Clinging to a dead branch stuck in a bowl of plaster the delicate blossom held the promise of a peach, almost as a reminder.
Ken and I talked about it when he came home. Scientifically, we understood that water supplied from the plaster was enough and sufficient nourishment had been pulled from a branch that for a time was more dormant than dead. Of course, the explanations were there, but for us there was deeper meaning in the small phenomenon.
Outside it was spring. New birth and promises were everywhere. With Easter approaching we had been reminded, once again, that as people of faith we find relief from our grief and comfort in that first Easter when Jesus Christ rose from the dead and now lives. Ken nodded with a smile accepting that Nick was gone – but I could see through his tears that he was filled with joy remembering — and knowing – that he would see his father and all of the others who had come and gone before us. We would see them and know their love and companionship throughout the eternities. The tiny lone blossom was more than a promise of a peach; it was the promise of new and everlasting life.
ALZHEIMER’S, CLINICAL TRIALS, HOLISTIC TREATMENTS AND SPICE
ADVENTURES IN HOLISTIC TREATMENTS
Using the spice tumeric has been reported as a possible holistic medication for Alzheimer's.
3/30/12 – Shortly after Ken was diagnosed with Alzheimer’s our grandson Sean called to tell me about turmeric. This was in 2005: former President Ronald Reagan was still alive and afflicted with AD as was Sargent Shriver and several other well-known people. It’s been my belief that having celebrity names included under the Dementia Umbrella brought the escalating problem up close and in the face of not only society, but the medical community as well. On the market to fight the dreaded disease were two medications Aricept and Namenda, and then, for me, came a shot in the dark: turmeric.
“The spice,” I asked Sean. “Yes, the spice. I just read an article where studies have been made in India about AD. What they found in this vastly populated country is that only 4% of the population shows any signs of Alzheimer’s, where in the U. S. it’s fast approaching 50%. Scientists have wondered about their diet – so different than the Western diet – and if it has any effect on avoiding Alzheimer’s. The question of spices was also posed with concentration on curry, of which turmeric is the main ingredient. The article went on to state that UCLA and the VA were going to do studies on the spice – to see if it could be useful in treating Alzheimer’s.” I thanked Sean, telling him I wasn’t going to wait for studies and would check it out with our doctor.
My dear Dr. Pleasant (as I refer to him) smiled, controlling himself as I told him of the report so as not to roll his eyes, and said something like, “really.” Not flinching at his skepticism I asked, “What can the medical community do for us in treating Alzheimer’s?” “Nothing,” he sadly replied. “So, tell me how much turmeric can I safely give Ken?” We talked and he checked his computer and I went home happy. This was something I could do.
At the health food store I purchased some organic turmeric, gelatin capsules, a loading tray and I was set. Beginning slowly I rationed the filled capsules to Ken which he swallowed along with a bunch of other vitamins and supplements he was taking, and we both felt as if life had given us a weapon. After all, being optimistic is a good thing.
CLINICAL TRIALS
Meanwhile, my friend Shirley called and asked if I had tried to get Ken into clinical trials. I hadn’t, but she continued with what information she had gathered and finally gave me a phone number so I could inquire if he was eligible for trials at one of the leading hospitals in San Francisco. “Call them” she encouraged. “It might help.” Ken had been on turmeric for a few years. While I didn’t intend to stop the spice I did call the number and set up an appointment.
Once I had given them Ken’s history, including Crohn’s, the surgery and the loss of three feet of intestine, Ken was given an examination as well as a host of memory tests. I was very impressed with their meticulous concern, their relay of doctors and the 3-hour time frame for the examination and evaluation, especially remembering how in 10 minutes our HMO neurologist arrived at his diagnosis. After speaking with Ken and me for a very short period of time Dr. Hurry said, “Your husband has Alzheimer’s,” and that was that.
The clinic doctors explained what would be offered if Ken were to be accepted into the clincial trials and I felt very encouraged and pleased. I also told them about his taking turmeric. “Has it done any good,” asked the doctor. I had to confess that I had no way of knowing because I wasn’t conducting a double-blind study, nor did I have any other basis for comparison.
After all was said and done, Ken was disqualified because of his previous surgery and the questionable ability of his system to absorb any medications taken by mouth. We were, of course, disappointed, but pleased that we had given it our best shot. And speaking of shots and patches, there were no other options at that time for any trials’ medications to be delivered to the body other than by mouth.
Even now with Ken, delivery by mouth is no longer simple. Following the severe automobile accident which involved both of us Ken wasn’t taking his handful of pills, nor the turmeric. The combination of me healing and recuperating elsewhere for three months, his minor injuries, and the new caregivers in his life no one knew or thought to follow our regimen. By the time I returned home he had forgotten how to swallow pills and capsules. Still needing blood pressure medication his caregivers have been hiding the small pill in his food.
VIRGIN COCONUT OIL
Will it make a difference? I don’t know. Did turmeric make a difference with Ken taking it for nearly four years? The answer is the same one I gave the clinical trials doctors. I don’t know because I had no basis for comparison, and even if it delayed AD’s progression for any amount of time I would not know for the same reason. I suppose as his caregiver-wife I am always ready to try holistic remedies because it allows some hope. Not necessarily hope for cure or restoration, or some gigantic breakthrough; it just keeps me involved allowing me to be a partner in possibly making Ken a little better, perhaps making a difference no matter how slight with this dreadful and mysterious illness. And I suppose it’s like doing whatever I can do to bring a little bit of my husband back home – just for me.
Questioning, experimenting, reading, learning and wondering helps me to keep my chin up and this is what works for me, and with our doctor’s input I continue to inch forward. I do say in conclusion; please don’t try anything new at home — on your own. First, check it out with your doctor. He still knows best — even if he rolls his eyes.
Seeing a fushia pelargonium reminds me of precious memories lost in the tangles of Alzheimer's disease.
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