Volume 4, Issue 2 - The Ribbon Newsletter

Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease

Volume 4, Issue 2
July 24, 2000

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:

The Ribbon
1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

Thanks for your help with this.

Book Review

"Hard To Forget"

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 Alzheimer's Story
Charles P. Pierce
Random House

Editors Note:
The Ribbon is currently looking into adding a Book Nook to our web site. When that happens, books such as this will be available to our readers. Watch for it soon!

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.

God bless,
Rev. Joseph Broz
Philadelphia, PA
cmajoe@ix.netcom.com

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.

Karen
KMenges581

E-Mail Bag

From LPNYFLGANY

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 withstanding.

I realizing you were venting your concerns, and don't necessarily expect a response, but I think the following may avail you an opportunity to put your concerns to rest..... or validate them, whichever may be the case.

Something struck me when you mention that you managed to get your mother in law Medicaid while she owns a house. You brother in law said it can't be sold or rented out. This may not be entirely accurate.

When you applied for her Medicaid, surely your brother in law was involved to have provided some of the necessary paperwork; deed, checking account statements, etc.??? It would've been required to have disclosed that she owned a home. If it was disclosed and she got approved, there's a strong possibility that a change in the deed took place, hence her eligibility.

One possible change that could have made that possible is that she (or her POA) transferred the home to her son or sons but 'retained life estate' privileges.

What this means is that she'd be entitled to live in the home as long as she's alive, but cannot sell it or be forced to do so by Medicaid. When she passes away, her interest in the home is gone and it is solely owned by the person or persons she transferred it to.

If this is the case, your brother in law is right; that it cannot be sold, without jeopardizing her Medicaid eligibility. It does not necessarily mean she'd be entitled to rents derived from it. (and then jeopardize her eligibility) It all depends on how it is worded in the deed and up to interpretation. This is where I'd strongly recommend you take a good look at the deed and ask the opinion of an attorney, preferably an elder law attorney who is versed in Medicaid Law. I'm relaying what I learned from our family attorney here in NYC. My brother and I subsequently gave Medicaid a signed affidavit that we assume all monetary responsibilities of the house, it's repairs, maintenance, etc hence our entitlement to rent received.

The Deed itself holds the KEY:
If your husband's name is on the deed, with the brother in laws, and the mom retaining life estate privileges, you could put your concerns to rest as far as the house is concerned.

Hope my input is helpful
Good luck
Linda P

From Datel123

This 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.

We don't have a name because there isn't a word used to describe all the things we do, but we do have a purpose and that is to be their anchor. When they feel they have lost everything and are so scared, we are the one consistent thing in their lives. But have you noticed that everything is referred to as being their needs.

But this fatal disease has a place for us. Have you noticed how I always reiterate the word "Fatal"? It's a place that none of us want to be. We are held in a time warp. We can't go forward with our lives, we can't go back, we are just dangling by that thin wire in between places. Those of us having spouses with AZ. has to be the worst. We are married, but are we? There is no one to discuss our day with, there is no one to help with decisions, there is no one to hold us and tell us that everything will be O.K. when we have a problem and are scared. There is no one to just walk by and feel the warmth of their body and know that they are here with us. We don't know the meaning of the word normal life. What we do have is a huge responsibility of caring for our spouse, loving them but the act of love has shifted and that love has changed from someone you are deeply in love with to the love you feel for your children. Either way it is a love that as we all know is overwhelming. They become our children, that is a fact. Where does that leave us? How many days, weeks, months, and yes years are we expected to be alone? This subject has been bantered to death. I have been to so many meetings, seminars, just discussing it with others in the same situation. There will be a different answer from everyone. This is one decision that no one but you can decide and it is your choice and decision. Regardless of what we do the guilt will consume us because we already feel that there had to have been something to keep this monster out of our lives. I have always been as they say on the AZ. Board brutally honest and I won't be any less with the readers of this newsletter.

Circumstances that I won't go into had changed the role reversal in our marriage many years ago. For more years than I want to remember I have been the parent and him the child. But just the thought of someone other than John in my life was unthinkable. I have a single friend who spends all of her free time with Internet romances, and going to singles meetings. She invited me on several occasions to go with her but it was something I never gave a thought to doing. For me to do that was and still is inconceivable. I would never in a million years deliberately go looking for someone to fill that huge void in my life even though the loneliness was killing me. I told myself that I didn't need anyone, I was just fine. So I just spent more time at HH with John. I would just live in his world. The thought of having someone in my life was unthinkable. I didn't go looking for anyone but whether through God's intervention or pure coincidence I did meet someone. I never realized how isolated and alone I had actually become.

He is a computer specialist and had come down from San Antonio to work on my neighbor's daughter's computer. He has 23 special needs children that he supplied with computers and keeps them running. He came over here and put a modem on my computer and I didn't even know what a modem was. My neighbor said I needed one to go on to the Internet for my research. He seemed to be a nice man but there were no bells and whistles. He just told me if I ever wanted to practice my typing I could say Hello to him. For a year we just talked back and forth. We became very good friends but neither of us was ready for anything else. We had planned to spend a week at the beach when a tropical depression came through and messed up my friend's beach house so we decided that I would go to SA for a week. I can't even begin to tell you about that week. We both walked on eggs, but he did so many thoughtful things for me. He would go to the store and bring fresh flowers. I was exhausted both mentally and physically as we all are dealing with AZ. I slept a lot. He made breakfast and brought it to my bedroom for me. For the first time in such a long time there was someone to talk to, laugh with and just for a while things almost seemed normal. I couldn't discuss these feelings I was starting to feel with anyone except the Psychologist at HH. In my mind and heart this was the ultimate betrayal.

When John repeatedly fell in and out of love with the nurses, even insisting I buy gifts for them, I understood. Then he fell so in love with this other lady. He spent every waking moment with her. When I was down there she would sit outside his door in her wheelchair. They were eventually found in bed together. I have researched this disease so well, I knew that this was completely normal and I even bought a nice Christmas present for him to give her. I understood and did not cause a fuss. But when it came to me having someone in my life it was an entire different story. By now he has become such an integral part of my life I can't imagine life without him. But their is a purpose for me opening my heart for all of you. There will be those of you who will never accept my decision. There has always been the age difference between John and I. Today I was talking to a dear friend who is seeing someone older than she. I told her if I could go back in time I would do nothing different. I will say this and it's not in defense of anything I do, have done or will ever do. I could never have formed any kind of relationship with another man without his understanding that my husband has and will continue to be the first priority in my life. Not only does he understand but he encourages me. I can't be the one to say the decision I made was right or wrong. I can tell you this. He has held me when I was totally out of control crying for my husband, allowed me to cry and understood. He not only encourages my care of John, he is always thinking of ways to enrich his life. Believe me he has received the brunt of my anger at AZ so many times and accepted the anger. The choice I made isn't for everyone and don't think I don't feel guilty. There never will be a time when I don't carry this tremendous load of guilt for choices I made. The thing that has to be remembered is that we are given so few choices. We can either go back in time with our spouse and stop living because unfortunately that is the only choice they have. Will there ever be a right or wrong thing to do? We are not dealing with normal circumstances. The word normal and Alzheimer's can never be used in the same sentence. The thing I did was to put my life back together the best I could and that included bringing someone else into the relationship. I can say I love this man, not the way I love John but I do love him. I am very blessed to be able to say that my daughter finally not only understands but has accepted. There is a choice. We have a choice, unfortunately our spouses don't. I feel that I am a much better caregiver, more patient, understanding and sensitive than before. Do I feel guilty? Absolutely, but as I told my daughter this relationship isn't about this big sexual revelation. It has been built on mutual love for one another, respect and knowing that our number one priority has and will remain John. But the part that has kept me sane is knowing that there is someone to share the events of my day. There is someone who loves me unconditionally for who I am and the things I believe in. Just something so simple as holding hands, laughing at nothing, trying to learn to cook again. It's so not about sex that it's funny. My daughter even asked me why it wasn't important. We have both been alone far too many years. The joy of taking a walk, having someone to carry on a conversation with who actually understands. I'm not ready for anything else and he understands. I have shared this with my friends on the AZ. Board and had so much support. Getting support from those dealing with this in their lives and it being their spouse has been overwhelming. The hardest part has been accepting the fact that I can never have a life with John, no matter how much I want that. The only thing you can do is follow your heart. If you do ever decide to allow someone in your life you will be surprised at the difference in the quality of that life. You also realize being happy makes such a difference in the way your responsibility of being a caregiver.

What I do in my personal life will never touch John in any way. But my decision was to not stay behind with him. There is nothing worse than losing your temper with an AZ. Patient. The lack of understanding on their part is something that we alone carry. I try so hard to never cross that line because I have seen the anguish, fear, and yes abusive behavior from him. But we didn't deliver this death sentence to them and we have to keep that in our mind and heart. This isn't something we caused or can do anything about. I realize I have broken one of the Ten Commandments but it will be me and me alone who will have to stand in front of God and be judged for my sins. He is the only one who will ever be qualified to judge me. This is my life and I am doing what I feel I can live with and live with some degree of sanity. Just please until you have walked in my shoes, don't feel that you know what is in my heart. It wasn't easy when he was diagnosed and it sure isn't easy now. We just all do what we feel in our own hearts is the right thing for our life.

Sincerely,
Dean Datel.

From HOST AHTH AC

Hi Friends,

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
www.pslgroup.com/ALZHEIMER.HTM

From VGrgory

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.

Please, get me back on the mailing list or let me know how you are doing. Please take care, you are a life line for so many.

Praying for us,
Vickie

From clause8@ibm.net

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 clause8@ibm.net.

From PHOTOLJT

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!

Additionally, I am thrilled about the Ribbon and am very happy it is alive and well.

Love Always,
Linda

As Always We Wish For You
Hugs and Peace,
Jamie...DrMOM1955@aol.com
and
Karen...KMenges581@aol.com