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Volume 4, Issue 2
Just a reminder: Have you notified your "buddies", family, and friends that they need to resubscribe to The Ribbon? This applies especially to those who are on AOL. You may go to the website Subscribe - The Ribbon Online which is http://www.TheRibbon.com/subscribe It is necessary because of the reorganization and rebuilding of the mailing list.
The US Postal address is:
Thanks for your help with this.
by Charles P. Pierce
As caregivers, all too close to Alzheimer's Disease, we know that this illness is not a normal part of the aging process. With all we read and talk about we also know that there is a thread somewhere in all of us that is thin but that connects us to it. In Hard To Forget, Charles Pierce explains what that connection is.
He explores that connection, beginning with the discovery of the illness by Alois Alzheimer and proceeds to take us through the maze of doctors and researchers to the present day. He describes the DNA research that links us to the illnesses of our forefathers. Intertwined with those facts, is the story of the Pierce family. How Mr. Pierce's father went out to get flowers one day and was not found for 3 days. That episode started a journey for the author.
He eventually lost his father and four uncles to the illness. In Hard To Forget, we share the pain of the family as they struggle through so many of the same denials we all deal with, it is an all too familiar story. The promise to "never put me in a home", the grieving process, the feeling of loss when the loved one is here but not, the affects on the entire family...it's all here.
Mr. Pierce makes us feel it all and educates us as well. We learn where AD began and, hopefully, where it is going. It is a window into the future. And in looking through that window, we also see hope.
I found it to be a book I could not put down. It was informative, sweet, sad and, at times, funny. A wonderful addition to a caregivers bookshelf.
Hard To Forget: An
Communion Service in AD Unit
One area of AD care that is sadly neglected is the spiritual care of the patients. Sad to say this area is often neglected by the medical care givers, the family caring for the needs of the person with AD and the clergy.
My mother was so blessed by knowing her only son was a priest. Even as AD advanced she realized that my calling to serve the Lord was special.I would enter her room and she would make the sign of the cross and point to me and fold her hands to pray. At her bedside she kept a standing cross with a risen Christ figure. Every night she "talked" to the Lord on the cross in words that only God could understand. This brought peace and comfort to her.
When the time came for nursing home care due to mother's inability to be left alone for even a minute. That cross with the risen Christ went to the nursing home. My brother in law glued this cross to a small table top - so it could not be removed from her room. Mother would take other AD patients into her room and show them her cross. And the nurses found other AD patients kneeling before that cross talking to the Lord. The medical personal found this amazing that this symbol attracted AD patients this way.
I suggested that I be allowed to hold a service of Holy Communion in the AD unit. The director at first rejected the idea but the nursing home staff encouraged and desired the service to be held on the floor of the AD unit.
I asked a retired missionary to bring her guitar and play the familiar hymns. The communion service had familiar Gospel, Psalms, The Lord's Prayer, confession and absolution, and consecration of the bread and wine, and reception of communion.
What happened was amazing the AD patients calmed down and participated making the sign of the cross, singing and remembering some of the words of the scripture readings and the hymns, praying the Lord's prayer and coming forward to receive communion.
My brother in law took photos of mom and her friends taking part in this service. My sister Sue treasures these photos. Many of the staff had tears in their eyes it was deeply moving to see these people struggling with AD respond to the presence of God that filled this place. This was a celebration of life lived now and the hope of eternal life to come.
Please pester your clergy person to not neglect those with AD the symbols, liturgy, prayer are powerful means of communication that is not dependent on words. People with AD need care for their souls.
The Lady With The Chartreuse Shoes
Florida is filled with elderly people. You expect to see them. Because my mother has Alzheimer's Disease, I guess I notice them more than most. Today, as I drove down a major street on my way home, as I sat at a traffic light, I noticed a little, delicate looking woman. She was carrying an umbrella. She was wearing a tropical print dress (as so many people wear here), chartreuse floppy brimmed hat and matching chartreuse shoes.
The light turned green and I moved on. And I thought, that lady is fine. She is one of so many happy, healthy elderly people here and everywhere. But she matches. My mother used to, she used to have impeccable taste in clothes. She knew what looked good on her and she knew what my father used to like her wearing.
It used to make me happy, when I got older, to see them getting ready to go out for the evening. A dance perhaps or cards at a neighbor's. He would look handsome in his very best suit and she would have a new dress or they would be sporting their best casual wear. They would be in a happy mood and be flirting with each other. I didn't realize it then but I know it now because I'm grown. And because I know they had a good marriage.
After Dad died and Mom was diagnosed with AD things were very different. Mom started not to match. I miss that. It seemed to be such a part of her. Now matching is a sign. When I see an elderly person with plaid shorts and floral shirt coupled with "that look", I know and grieve again for my mother.
That's what I thought when I saw the lady with the chartreuse shoes.
In a message dated 4/15/00, M2252 writes:
"His brother does have power of attorney for all of moms assets and bank accounts. We have yet to receive the check book so we can use what's left of her SS$ for necessities for her. We have managed to get Medicaid and a nurses aid for 4 days a week and she goes to a senior center 3 days. But (God forgive me) I'm concerned about her accounts. She has a house that has been sitting vacant since Aug of 98 when she came to live with us. His brother insists that it cannot be sold or rented."
I read your
post and it's a shame family relations are compromised when this,
or any devastating long term illness hits. My family not
is such a controversial subject and rarely does anyone write
about it. But I seem to always be the one to open the preverbal
can of worms so I feel qualified to open this particular one.
More and more younger people are being diagnosed with this evil
disease. It seems that it is relentless in its quest for victims
and where age used to be a factor, it no longer is. So this is
how I have handled my life. It isn't for everyone, I will be
criticized, I will be scorned, and most of all there will be
those who will say "How could you?" I make no excuses to
anyone for the way I am trying to balance my life. Only the past
month have I been diagnosed with having strokes and just two
weeks ago the last one was much more serious. But life choices
were made before the strokes. The last article I had in The
Ribbon was received with such positive responses from everyone. I
don't expect that this time. I'm sure that you all remember I am
supposed to be writing a book. I wanted everyone to know the
prospective of losing a spouse to this insidious disease and the
feelings and emotions you feel. When I first started, once I got
past deciding on a title the words just flowed from my soul. I
couldn't type fast enough, but as the disease progressed, it
became increasingly more difficult to sit down and write about
events that were so painful. From yesterday when death came so
close I think I felt better about my decision. When he decided
that he didn't want to live this life and in his confused state,
I had to go too. Not finding shells for his shotgun was the only
thing that saved either of us. After that moment I finally
realized that those of us not afflicted but carry the burdens
don't have a place. We are sandwiched in their lives between
Physicians, nurses, the pain of having had to have them placed
and the constant guilt that consumes us.
From HOST AHTH AC
I have found this site that I think is worth checking out. It lists the latest breaking news on anything related to Alzheimer's.
Alzheimer's Disease -
Doctor's Guide to the Internet
I hope this
finds you doing well. I have really missed so many of you, but it
has just been a struggle to get through the day. I have come down
with Arthritis in my lower spine. Now the pain doctor is doing a
lumbar on my spine and putting cortisone directly into the spine.
Two weeks ago, I found out that I have about 10 ulcers, so it
just seems to keep getting worst. I know I am luckily compared to
many. My MIL is getting worst each day, but we all know that is
how AZ works.
The Long Goodbye
Four years ago, Elsie and I started plans for full time retirement. I took an early retirement and started a consulting business. Elsie was a Flight Attendant and had switched to international flights. These plans were about to become unraveled, and our lives changed forever. The following synopsis, is familiar to those of you who have been through it, and for those who have not, hopefully it will help to answer some of your questions.
Elsie began experiencing short-term memory impairment, and behavioral/ psychiatric signs and symptoms began to suggest dementia. The forgetfulness worsened; aphasia/dysphasia began including: difficulty writing and articulating ideas and impairment of speech; and apraxia problems surfaced, e.g., inability to differentiate between pushing and pulling, front and back, confusing right from left and turning an object in a CW or CCW direction, etc. Paradoxically, Elsie's coordination at tennis was good enough to hit the ball.
We could not get a satisfactory diagnosis of the problem from the family physician, but because Elsie was put on 5 mg of Donepezil, (Aricept), the doctor most likely suspected dementia of the Alzheimer's type. She was already on meds for hypertension and hypothyroidism. Several highly recommended neurologists took MRIs and found no indications of AD or neurological damage.
Elsie had a bad car accident receiving a violent blow to the head, which was diagnosed as a concussion syndrome. Face x-rays revealed no neurological damage. Elsies condition deteriorated and was unable to work. She became depressed and psychotic, e.g., She saw dead people were rising out of the ground, I became two persons: one a good friend Bill and the other a bad husband who only came around to take money, and Strangers were coming into the home. The agitation gradually changed from disruptive and non-aggressive to physical aggression. A state appointed psychiatrist diagnosed severe dementia, possibly type AD.
The Geriatric Center of a leading university hospital became Elsie's primary physician, and I enrolled her in the Alzheimer Disease Research Center (ADRC), where she was screened for AD. The diagnosis was AD in the moderate stage (MMSE 14). Elsie began wondering off more frequently; I received phone that Elsie was walking down the road. She would go into the woods and hide. If I tried to approach, she would run away. Fortunately, we live in the country where there is little traffic and it is safe. The frequency, duration, and severity of agitation increased, and the physical aggression became increasingly difficult to manage. Elsie called 911 and reported that I was in her house to steal money. In another incident, the police set up a roadblock, when Elsie suddenly became violent while we were in the car and I had to restrain her from getting out of the car while we were moving. A driver called the police and reported domestic violence. In a shopping strip, Elsie got out of the car and ran away. It was dangerous because of the high traffic. I caught her and had to physically take her back to the car. People observing didn't know whether to come to her defense or not become involved. Luckily the police were not called this time.
At the ADRC annual examine, Elsie scored a 4 on the Mini Mental State Examine, which placed her in the chronic level. Based on the behavior problems, she was placed in a university pyshiactric hospital, where she remained for eight weeks. Elsie's depression and psychotic behavior increased exponentially. The medical team attempted to stabilize Elsie with anti depressive and anti-psychotic meds. Elsie's condition deteriorated rapidly. She went without sleep and walked constantly, when not in restraints, until totally exhausted. Her gait was unsteady, and she would be placed in restraints to prevent falling and hurting herself. Weight loss became a concern and when she became dehydrated; the medical team feared aspiration and death. Elsie somehow miraculously survived this hellacious ordeal and was discharged to a memory-impaired unit of an assisted living facility.
Several months later, Elsie became combative and was discharged to a psychiatric unit of a long term acute care facility. It was clear, after several weeks that a psychopharmacologic approach did not work, the court was petitioned for electro convulsive therapy.
The situation was turning critical. If the physical aggression could not be controlled, Elsie's options were few and unacceptable. Recent Patient Rights federal and state legislation restrict care facilities' ability to manage disruptive behavior. Employment of physical restraints and/or sedative drugs, places cares facilities at high legal risk. Skilled nursing homes willing to accept AD patients with aggression problems are so pricey that life savings are depleted at an astonishing rate, unless you have no assets and qualify for Medicaid or a multi millionaire. What took years to accumulate could be lost in several years. If a specially equipped skilled nursing home will not admit a patient whose behavior presents a likelihood of self inflected harm or harm to other residents/staff, the only option is a state mental institution.
Facing these options, I began researching off shore alternatives, which resulted in visiting care facilities in Costa Rica. What I discovered in Costa Rica relieved the anxiety over the future. A palatable solution is available. Fortunately, a judge approved the petition and Elsie went through an inpatient series of treatments. The ECT worked and Elsie was discharged to the assisted living facility. Elsie is currently undergoing maintenance ECT treatments, and the incidences of agitation/aggression decreased and Elsie is happier, heather and there seems to be a slight improvement in speech and comprehension. As long as ECT works, Elsie will probably continue to reside in a US assisted living facility. The long-term plan is to relocate to Costa Rica, where she can receive the level of personal care and dignity she deserves, without losing our hard earned savings.
If anyone has experienced similar problems with caring for an AD patient with aggressive behavior, I would appreciate hearing from you. I currently do not have a web site, but can be reached at email@example.com.
Just wanted to drop you a
note about a friend of mine that had a very horrible experience
happen to her; it ended fine, but very scary nonetheless. She was
driving down the road and her husband, who has Alzheimer's, got
upset because of her turning off the radio. As a result, he tried
to get out of the vehicle which was moving at over 65 mph.
Fortunately, the vehicle was new to the family and so he could
not find the door handle. The friend, however, was scared
spitless. She asked to remain anonymous, however, she wanted me
to share this will all of you and implore each of you to
investigate getting child locks on your vehicles. I think it is a
very wise thing to do!
As Always We Wish For You