Volume 4, Issue 7 - The Ribbon Newsletter

Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease
Volume 4, Issue 7
October 1, 2000

Memory Walks are happening all over around this time. Ours was last weekend, it got rained out. I hope you have the opportunity to participate in your local Walk. It is a grand occasion to meet others who deal with Alzheimer's whether it rains or not. A donation was made for all of us in the name of The Ribbon. The donations are so very important for The Alzheimer's Association to keep up the work helping all of us.

Sharing

Karen and I started The Ribbon in order to help caregivers and families as they journey through the maze known as Alzheimer's Disease.

We chose to keep it a free publication whether you get it via email or by US Mail. It is our vocation to share what we learn and to do so without cost to you.

We are thrilled when one of you writes to let us know that you are making copies and sharing them with others. That is our whole purpose; to share information, tips, answer questions, and to just share our lives with others who understand what caring for someone with Dementia entails.

What we don't understand is why a lot of others do not wish to share...or...they will share for a fee. Why wouldn't everyone who has any connection whatsoever with Alzheimer's Disease want to help someone else travel the maze?

Our world has gotten so "lawsuit happy" and so "money hungry" that we must be so very careful about what we print and where we send or give out The Ribbon.

Let us as caregivers and families unite and demand that information be distributed and shared without the fear of reprisal. After all, aren't we all just looking for answers in every nook and cranny we can find?

We do run into wonderful people who feel as we do and hopefully others will join in and realize they need to do the same.

The Ribbon will always be shared freely. You always have our permission to copy and distribute it to those in need. We are now working on a flyer that has the web address and Mail address so we can send to Nursing Homes, Senior Centers, Doctor's offices, etc. If you would like a copy sent to you so you can do the same just let us know.

Jamie and Karen

A Deeper Love For Mother
by Mary Emma Allen

Caring for one's mother when she develops Alzheimer's can be sad and frustrating, but it also can bring joy and a deepening of love.

Throughout my life Mother was a loving mother, but a rather domineering woman. I realize now her attempts to control her children's lives resulted from her mother love and what she considered best for them. But this made closeness and confidences difficult, especially when I married.

However, as Mother developed Alzheimer's after my dad's death, it seemed to fall to my husband and me to care for her and attend to her business affairs.

"Why me?" I wondered. "Why Jim and me?"

An Answer

However, as Mother required more and more care, I began to receive my answer.

It's not easy to care for someone with Alzheimer's, to make decisions for your parent when she resists, to realize you're now the parent to your parent.

There's a bittersweet sadness as you accept the fact that your once vibrant, independent mother is now your responsibility, a woman who might resist you sometimes while accepting your directions with relief on other occasions.

Love Changes

But gradually, from this care of my mother, I realized my love for her had changed.

It was no longer something taken for granted, something that was expected because she was my mother.

I suppose I could have turned my back on her, refused to care for her. But from caring for Mother, now childlike, I found a different, yet deeper love and joy.

Love From Serving

This deeper love has developed as I've served and cared for her.

To know I can give her security and comfort and joy, even when she no longer knows me, results in a feeling of satisfaction. But even more than that, there is a love for this person who needs me as she never did when she was independent.

To realize I can bring her pleasure with a hug, a pat on the cheek, or a song becomes a reward I never would have known if I'd refused to care for her as she developed Alzheimer's.

"She knows it's you, Mary," said the nurse as Mother smiled when I spoke to her and held her hand while she sat in her wheel chair.

Whether Mother realized who I was or not, it was gratifying to know I was bringing her pleasure and making a difference in her day.

(Mary Emma Allen has written a book, "When We Become the Parent to Our Parents," about coping with her Mother's Alzheimer's. Mary also has begun publishing a newsletter, "Parenting Our Parents."

For more information, visit her web site: http://homepage.fcgnetworks.net/jetent/mea;
E-mail: me.allen@juno.com

In Passing: Those We Must Remember

From Punyun

Dearest Karen, well my dreaded moment has come and now gone. I lost my Mom...my friend who was always there for me no matter what...on Labor Day September 4th. The last two days of her precious life was so sad. I can't say enough about the Hospice angels for the last two days they were here back and forth most of the day. They were even going to stay the day she died so I could get some sleep. Hospice was a blessing for me as I knew when Mom came home this last time that I didn't know what to do. Here I had cared for her the whole time and had done everything and I was stumped. I was scared I didn't know what to do and Hospice was suggested. They came in and took charge of everything I didn't have to do anything except try to get Mom to eat. They handled every thing that came along. They corresponded with the doctors and made sure that Mom was not in any pain. They explained everything to me right thru to the end. She was comfortable until the end and medication was increased as it was the end and the medicine hadn't been being absorbed the last day. I truly don't know what I would have done had they not been here. I watched this horrible horrible disease right thru to the end. God Bless you all who have loved ones with this disease and for me...I'm lonely without my one friend I could tell everything to. She always guided me, always there for me with a listening ear. I will miss that....Ginny

Links

Top Alzheimer's/Caregiving Sites, brought to you by A Year to Remember
http://new.topsitelists.com/bestsites/bpsibley/topsites.html

As this issue is being put together The Ribbon is in first place. Please continue to vote for us and also check out the many wonderful sites Brenda has listed. I have found them all to be very informative.

Alzheimer's Disease
http://alzheimers.about.com
Loads of information at this site. It's also very easy to navigate.

Email Bag

From Cwadephill

The Heart Remembers

I have of late begun to gather and appreciate quotes as they convey much in a few words. As much as I like poetry and write some from time to time, I have never been able to remember and recite any from memory. But quotes are a different story -- short, sweet and to the point. Relationships are sometimes very hard to define, but the quote from Lord Byron, "Man's love is of man's life a thing apart, 'tis woman's whole existence," really seems to sum up relationships of many in my era and before. Katherine Hepburn wrote: "Love has nothing to do with what you are expecting to get, only with what you are expecting to give, which is everything." -- This was pretty much how I entered into my partnership with my husband. And when my children came it was miraculous the unknown void in my heart that was filled -- Something a man can never really understand this early in life I don't feel -- the completeness it brings to one's being, for the depth of a mother's love is truly immeasurable. My husband even admitted when our daughter was 5 or so and was in for stitches from a fall, that he hadn't realized just how much he loved her till her plaintive cries of "Daddy, don't let them hurt me," pulled at his heart and he was helpless in the situation. But women are different creatures. Our life is centered on our home, husband and family. Doing our best to create a loving, secure home, a safe haven from the world. I don't mean to sound 'Pollyanish', for truly my family's life would not be likened to 'Ozzie & Harriet'. A roller coaster ride for sure, and at times the familiar sameness of a merry-go-round. But through it all the love and security of our relationship remained.

And you wonder, "So, where's this leading to?" Actually more quotes!! (Sorry I don't know these authors) "Nothing the heart gives away is gone, it is kept in the heart of others" "The Heart Remembers"

As my memory fails more and more, I find that I rely on my heart more and more. Long after someone's words or deeds, long after the love, hurt, disappointment or embarrassment, I recall how that person made me feel. Call it a woman's basic instinct, or intuition -- it seems to have become more clarified. And I believe that this is so for many other dementia patients. Long after the words are gone, long after the names and relationships are forgotten -- there is a recognition from the heart, from the soul, that shines through when someone comes that represents love, safeness, security. And so I write to ask you as Caregiving spouses, partners, to value that as the last spark of our life of who we were, its a very fragile one at best -- for many it will be all that is left of our lives having lost everything even ourselves. The head may no longer be thinking, but the heart remembers.

I am not trying to judge you, indeed my head does understand the need for you to be comforted and supported. But as sure as I sit here and write this I believe that your spouses and partners in life had very strong feelings about not being the one to share the fruits of your lives with you having been taken away with this living death sentence weather or not they shared these concerns and frustrations with you. The guilt that they felt at having unwittingly having placed you in this position of caregiving -- although there is a certain desperation, hoping that you will not listen to the bravado "Move on, find someone else...I understand" Ah, as I said the head does understand, it is the heart that is crushed.

So I only ask a few simple things of you. If you find yourself in another relationship, it is perhaps a guilt that you will have to find a balance for in your heart. As you search for solace and an understanding heart to help you shoulder your burden as you journey through Alz. D do not share that relationship nor guilt with us. Do not mention their name in conversation. Do not bring them to visit. ( I think women's instinct for feeling the change, charge in the atmosphere is basic, intrinsic) If it is someone that you have brought into the home to help and you find a flirtation perhaps developing - find another helper (be respectful, it is their home -- take it elsewhere) Remember as the disease progresses we digress to infants, and most of us were a pretty good judge of other's emotions then. You'll recall the infant whose eyes had not yet focused, whose head turned at the sound of their mother's voice and was calmed instantly be her touch. Again a basic instinct -- How you make us feel. Is it loved, secure, safe? Or threatened with a loss of your love? The only proof to ourselves left that we have lived.

From Cwadephill

I shared my article with a friend, another diagnosed with Alz. D to see if he could or would like to add anything from perhaps a man's perspective. He is someone whose opinions that I value and trust. The following was his reply. -- I found his closing sentence most touching. - Jan

I don't think there's a separate "man's" point of view--I think the answer is in the heart, and that's universal.

I'm led to think how we with dementia feel unlovable and that the most we can hope for from others is kindness or that they honor their commitments.

We with dementia aren't the only people in this world who feel unlovable. There are the overeaters, the people-pleasers, the men who feel they can only be valued for what they achieve, etc. So maybe if we can help each other feel deserving of love, we can do something for humanity as well as ourselves.

---Morris

Editor's note: Jan is an occasional contributor to The Ribbon. She has been diagnosed with Early Onset Alzheimer's Disease. I truly admire her and now Morris for keeping us aware of their point of view. It is important for those of us who are caregivers to know what they think and feel.

From aginginhome8@aginghomeservice.com

Saturday, November 18
9:00 a.m. - 2:30 p.m.
Turnstone Center
3320 N. Clinton
Fort Wayne, IN

An informational workshop free of charge with emphasis on how to deal with healthcare professionals, preventing isolation, taking care of yourself, and financial and legal planning.

For further information call Aging & In-Home Services at (800) 552-3662

Thank you.
Kathy

From Datel123

The Fallout of Alzheimer's

I have made a vow to never be less than honest with the readers of this wonderful newsletter and as hard as this will be to tell, I can't stop now. Last Thursday night I had decided that I could not do this any longer. There were too many burdens and I have been doing them alone far too long. There were so many things that preceded this to cause me to temporally lose my mind I'm not sure I can even remember them all. First of all I have been sick for a week with diarrhea and couldn't shake that virus. I lost 10 pounds in less than a week. Yes, I desperately want to lose weight but not this way. I ran out of toilet tissue and I am one of those people who always have extras so I never run out of anything. I was down to using Kleenex. The new commode in the hall bathroom broke. The taxes on the houses I had sold were so delinquent by the time I found out they had been turned over to an attorney for the City to take them. I haven't had any money on those houses or the house they rented next door for their daughter in 4 months and that is how I live. I was hit with almost $10,000 back taxes and they had to be paid or the property would have been auctioned. To have to worry and try and decide what and how to do is overwhelming. We are in the process of having to get John a new leg and here we go again with another uphill battle with workman's comp. to pay for it. He had called me crying two weeks ago saying his leg hurt and when I got there and saw his stump I could have killed off half of HH. They just assumed that because he always has something hurting that it was his arthritis. He pulled that blood, pus, soaked wool sock and I just lost it. How had he been walking? When he had someone call me and tell me his leg was hurting I told them to tell him I would be there. By the time I walked in, and yes I hurried he was sitting there at his dining table with his head almost in his plate and tears were falling into his food. I did everything I could and knew that the place we go to have work done on his prosthesis would be open only half a day the next day. I left three messages on their machine telling them we would see any technician but he had to be seen. I got him there and I have to go into the very middle of downtown Houston. I have already called his primary physician about the infection. They adjusted it as much as they could, said he had to have a new leg, he was put on complete bed rest and I took him back to HH. On the way to Houston there was a lady in a white Ford Explorer who got on the freeway at the same time we did. Her left rear driver's side's tire was almost totally flat and traffic is heavy. This woman seemed to stay in front of me, beside me or behind me. Now I have never had a blowout or flat driving 60mph but with so much traffic I'm convinced that there would have been a wreck so I am trying to stay away this woman without alarming John because he had already said she was going to kill us all. I could see a HPD sitting on the side of the freeway in front of us and she pulled up right behind me, I changed lanes, she did the same thing and I did the same thing. The next thing I am being pulled over written a ticket for not signaling when I changed lanes. This cop was the biggest jerk I have ever encountered. He would not let me say one word in my defense, told me to tell it to the judge. Now all I have done is change lanes without signaling and if you put everyone in one big place that drives I10 every single day and doesn't signal when they change lanes it would fill a city the size of Chicago. So here is another worry, do I fight this thing, have to go downtown to a place where I know nothing about the court system and know that I don't have a prayer of winning or do I try and find the money to pay it? Do I go and spend a day and as much money as the ticket taking defensive driving and all the problems of getting that set up? I had used up every cent I had in savings to pay those taxes. I am terrified of having no money and it looks like my worst fear is upon me. I lose my box of checks. My checks, the Miller Fund, everything and it cost me $70.00 to get me checks by Monday. My house looks like a tornado went through because I was frantic looking for those checks.

The tremendous burden of the strokes has left me financially ruined and had another one last week and one the week before when I almost bled to death when I fell and cut my mouth and the blood thinner wouldn't let the bleeding stop. A night in ER. Last week I fell and my head hit the concrete and I had a knot on my head the size of a goose egg. I saw my neurologist and was told this last one was much worse than all of the others put together.

That night I had hit rock bottom and actually saw no way out of this mess. I cry every day of my life for the loss of the man I love. I cry for all of the things he will miss in the grandchildren's lives. My heart breaks because he is failing more each day and he is starting to fall. His mind has diminished so much, I can barely stand it. So all of these things are going through my head and I kept thinking. "What am I going to do?" I can't even take care of myself, much less John. I came over to the computer and put everything down for Dan and Lisa, I took a shower, and went to bed. Then I started taking pills. The ironic thing if there is one is that I have maintained my entire life that I would never take my life. Clinical depression runs in my mother's side of the family and when she tried to commit succeed I can remember thinking how utterly selfish she was. How dare she? But that lonely night when I felt that I couldn't take another step it seemed the only thing to do. As you can see, I didn't succeed, I ran out of pills. But that night gave me so much insight into the way things really are. Houses are merely that, something material. So is the ticket, something that can be managed. The money problem will somehow solve itself and if it doesn't it won't be the end of the world. I hurt and disappointed a lot of people that night and I now realize that I was not solving a problem. I was creating one that could have never been repaired. So I am very disappointed, frantically furious at myself for even thinking of doing anything so stupid and foolish. But there were lessons learned that night.

I have seen my Family Physician and we realized the reason for the depression. The Prozac which incidentally is the ONLY thing I can take is $284.00 a month and I had cut the dosage in half and the medication that was working with it, I had increased. I was shooting myself in the foot. The medication is straight, my mind is healing. and my body is slowly healing. But I want everyone to know that the past 12 years have been one nightmare after the other and it has been me and me alone doing all the caring and I felt I couldn't do it anymore. I turned it over to God and I would allow him to have it for a while but I always reached over and took it back. No one but me could care for John. But taking my life was not the answer for any of us. It would have destroyed what is left of this family and what a legacy to leave your grandchildren. I have shared this with you as I have every aspect of my life but if you are going to be critical of me please keep your feelings to yourself. I am still too fragile to deal with anything negative. There is nothing you can say to me that will make me feel any worse than I do, believe me. I love you all.

Dean

From Isnyder@ucsd.edu

I recently visited you web-site and think you are doing a wonderful job with The Ribbon. I wanted to make you aware of a resource that may be of interest to your readers. I am the Clinical Social Worker for the University of California, San Diego's Alzheimer's Disease Research Center. Last year a book I co-authored with seven persons with Alzheimer's was published by W.H. Freeman Publishers, New York.

"Speaking Our Minds - Personal Reflections from Individals with Alzheimer's" may be of interest to your readers as it gives caregivers insight into the subjective experience of the disease. You can find out more about the book on Amazon.com, and if you have any question about the book and the work,please feel free to contact me.

Again, thanks for all of your good work on behalf of families.

Lisa Snyder

From PPear

I am a national advisor for Sigma Kappa Sorority. We raise money and support alzheimers. I would like to recieve the news letter and see if you can help me in locating a "speaker" for my collegiate chapters in Indiana on Alzheimers. Thank you for all that you do. Paula

Editor's note: Is there anyone who can help? I think it's wonderful that young people are getting more and more involved.

Question to Karen about VA Benefits
From Keyso

In latest addition of The Ribbon newsletter you mentioned a family getting
help because the husband had been a vet. Here comes the stupid part--is any spouse eligible, no matter what their financial situation is, or just those in running short on funding?

Thanks,
Gayle

Karen answer

That family was mine, the husband was my dad. The benefit is based on need. It is not an automatic entitlement. In other words, if you need it, if there is not enough money for the widow to support her needs (long term care), then the benefit is forthcoming.

You must apply for it, there are reams of paperwork, and evaluations to determine if the widow truly requires 24/7 care. As I said in the article, we initially got some help in paying for in-home care and just a few months after that was in place, Mom got physically ill, was hospitalized and we moved her from the hospital to a care facility.

It took about 3-4 months for the VA to "reevaluate" her case and for the increased amount of money to start coming in.

I hope this answers your question, Gayle....if not let me know.....Karen

Replies to Jamie's question

From Sals62

Dear Jamie, My husband is now in full time care but he was very much against day care at first and so what I did was take him and then tell him they needed him to help with the other folks in there and it would be like a part time job now that he was retired. He complained a couple of times, but I kept telling him that he really was needed and they could not do without him and soon he was looking forward to going and "helping". I know that is one of the difficult stages that I had with him. But now that he is really not knowing anyone and very frail looking I look back and realize that that was a good time since at least he knew who I was.

Love, Sally (Sals62@aol.com)

From JRNYWMN

When Janalee and I wanted to get Mom interested in the day care, we went with her and stayed there and talked with everyone for 2-3 hours....making it seem very fun and interesting. We went to see a play they had; we entered their craft fair. It wasn't easy, but Mom started seeing familiar faces and it helped.

Good luck! Ann and Janalee

From babesmail@home.com

You might try an activity that we have been doing with patients in Day Care. It is called "collage conversations". We place magazines and,or, photos in front of them, when they see something that they like, or brings back some fond memories, we cut them out and paste them onto a colored poster-board. (if there are words chosen, use them as well as images!) When the board is filled, adhere it to a wall, on a table or any place where they can enjoy looking at it. It can be laminated for safe keeping. It will give her pleasure every time she looks at it, and be proud that the collage was her art piece. Please try it, and give me some feedback. I want to know her reaction and how well it worked. Along with the making of the collage, try some conversation about the chosen images. It really works! This is part of a program called "RETURN TO INNOCENCE". It's still in the developemental stage, but we are already doing workshops with family caregivers, and it's been very successful.

Helen Fleder, Sarasota, Florida E mail address babesmail@home.com

From Lyno55@hotmail.com

Lost With Words
By Lynn S. Keane

What do you say to your friend when someone close to them dies,
that they look good when they're dead, when you see tears in their eyes.

I feel the hurt inside along with your fear,
I rest my hand on your shoulder to show you I'm near.

I feel the darkness and loneliness and sense how strong you try to be,
I try to say a few words to you but it's really hard for me.

Someone very close to you that person is gone,
you blame yourself and ask what you did wrong.

I stand next to you to let you know I am there,
I will be by your side to show you I care.

Mother's Nature
By Lynn S. Keane

We start out so small, curled up inside.
as we grow in life, we stretch and open up so wide.

We learn, choose and absorb our knowledge through many years,
but as we see ourselves get older we also see the fears.

I see you fragile, sad and closing up as you get old,
It hurts me inside to see you age , lose strength and watch you fold.

I see you as a child; lost looking for a way,
I will be there for you as we take each day.

I have to accept that one day you will be gone,
but for now, together, you and I will stay strong.

You can read more from and about Lynn by going to www.poetry.com and entering her name under "Search for a poet".

A gentle reminder: Please continue to tell your friends and family to contact us to "resubscribe". We must have a request on file. This is for AOL subscribers only. The web based subscribers we were able to keep on file. Thanks for your help.

Hugs and Peace,
Karen and Jamie