Volume 3, Issue 5 - The Ribbon Newsletter

Volume 3, Issue 5
April 14, 2000

Somehow, someway we have all survived the winter of '99 -'00. Changes have happened, some good, some difficult to accept but as always, life goes on. The promise of Spring, the ever-increasing sunshine, the flowers blooming again, all give us a sign that there is hope and good things ahead. When things become difficult for us as caregivers, we need to take pause to see these things, to "stop and smell the roses". It is so easy to become overwhelmed and to lose sight of life beyond caregiving.

Let spring open your eyes and your heart.....enjoy!

E-Mail Bag

From FibroFrazzled

Hi......

I have so many questions about Alzheimer's Disease. My stepmother has been diagnosed. She will be 83; my Dad will be 83 in March.

Her first symptom was loss of speech which made a diagnosis almost impossible to obtain. This was several years ago. The diagnosis of Alzheimer's was finally made. At this point she cannot talk at all. Most of the time is having problems dressing herself, Dad does her make-up, most of the time. Her bowel and bladder habits are not under control any longer. Most of the time its controlled, but not always. Her balance is poor. She cannot get up from a sitting position such as from a chair without help. Aricept has not helped at all. I do believe she is taking Zoloft for depression.

My stepmother was a very meticulous person. Now, on Sundays' when they go to a restaurant its very difficult. Usually spills whatever liquid she may have. When she eats she misses her mouth more than not. One night for example she spilled a Malted Milk at the table while we were playing cards, she didn't even care, and she took the cards and was playing in the malted milk on the table. I was attempting to get a wash cloth and clean it up, but I could not move fast enough.

If she does not see my Dad, she panics. Or if we tell her he will be right back she is at front door watching for him.

She does have 4 daughters, one of whom lives in the same state. All 4 seem to be in denial. The daughter who lives in same state, just acknowledged a week or so ago that her mother is not well, and its obvious. Two of her daughters are quite well off, should anything happen to my Dad, I physically cannot take care of her. We do live in the South, are from the North originally. One daughter is in the North. Stepmother has refused to go north should anything happen to my Dad. This was a week ago, there are times that she is very coherent, other times she has a blank stare, which is a fairly new for her.

From what I have read she is in Stage IV. Testing is next to impossible because of the speech impediment and has been almost from the beginning. All tests such as MRI, CT scan are within normal limits.

One of the problems now is Dad has a hernia from lifting her from sitting position; will need surgery. He also has a pacemaker and I feel that he is not telling anyone his true medical condition because he knows what I will say. He does have the buzzer (for lack of better word) around his neck to call 911. Took a long time for me to get him to get it. He feels he is in a prison in his own home with no outlet. he is unable to go to a support group because she has to see where he is, if not panic sets in. I go online to the support groups when I can, which is not often, for I am physically disabled. As it stands right now, I am partial caregiver, I support him, talk on phone with him, etc. We have taken care of the legal work a best we can due to the type of living trust will they have.

Is there a next step for her? Such as what possibly will happen next? I do realize medicine is not an exact science and in a lot of diseases there is no way of knowing what can happen next. But there must be some way of getting an idea of what is next for them.

We have tried to find help for them in cooking a meal maybe twice a week, cleaning the house once a week. But what I have learned is the cost of this is astronomical. Insurance does not cover it; as they are on an HMO.

We have totally run out of ideas to help. I wish I could do more, but with the diseases I have, I'm unable to do anymore than I am doing which is research and calling for him. I have FMS/CFS; rheumatoid, osteoarthritis, with osteoporosis, diagnosed sleep disorder and epilepsy due to auto accident in 1970. You may well know about Fibro; recent memory loss, confusion and what we all call Fibro Fog. Until the disease is diagnosed the patient is in a pure panic state not understanding what is happening to them. I can see the decline in my health in the past year.

My mother passed away in 1975 of CA, she had it for 17 years, and I helped Dad with her care, and what I remember even though she had the CA for 17 years, Alzheimer's is totally different and in many ways much more difficult.

I did get your newsletter from a fellow Fibromyalgia patient in one of the chats I go to. I am unable to sit and follow the chats as my eye sight is not that good, also due to the fibro.

I hope I have put things in a fair order here, I am hoping to get some type of answers about stepmother's case. I have read the book 39-hour day, I believe its called. If there are any questions you may have, please feel free to email me, my addy is: FibroFrazzled@aol.com I don't know if we have any other options or help for Dad or stepmother. He does refuse to put her in a Nursing Home. As far as he is concerned that will not happen as long as he is alive. I've tried to explain and remind him, that if he is very ill, or has passed away that this will not help his wife at all.

I do appreciate you taking the time to read this and any ideas that you may suggest are appreciated.

Thank you very much
Dori aka FibroFrazzled@aol.com

From Datel123

I literally live from month to month for The Ribbon. I am so sorry for Jamie's loss and it really touched a nerve with me. I stay on the fence regarding my feelings about this disease and have written and had my letters printed each time to The Ribbon. A few months ago I backed away from the Alzheimer's board. I felt I was consumed with this disease and wanted to just work on my book and not respond to questions or relate to anyone on a daily basis. Well, I quickly discovered I couldn't write. Before the words that literally flowed from my soul now seemed to be stiff and sounded so unlike the real way it was. So I didn't write. I have done so much soul searching and I am in the same place I was when this all began. You think that there will be a day of acceptance in your life. One day you will wake up and everything will fall into place and you say to yourself, Why did it take me so long to understand? It doesn't happen that way, it never has, it never will. This disease is so much harder on the families than other fatal diseases. Unless you have lived it, you will never understand. I gave up long ago trying to get others to understand because I finally realized I was beating my head on that brick wall again. You learn to live with the relentless questions, you even learn the way to handle the answers. What you never learn to do is forget. How can we? We all want our lives to be as they were, but they won't and its up to us to face reality. Lately for some unknown reason my mind has been thinking about when he is no longer with me. That is something I, for the life of me know is reality but cannot face. Death has come so close to me this past year and I have never handled it very well. Actually that is an understatement. But to think there will actually come a day when I can no longer see him, regardless of his condition and know that I will never be able to touch him or put my arms around him ever again is unthinkable. My heart can't even stand the thought so when it becomes reality how will I ever be able to let him go? How will I ever be able to wake to a day and know I will never see his smile again or feel his touch? Yesterday on the news I heard that by the year 2040 there will be 40 million with this monster in their lives. Now there is an estimated 4 million. We are regressing with the research or have come to a complete halt. You will never get the general public to understand the devastation that AZ does to the lives it affects. Until your feet have been in those shoes there will be no understanding.

Not only is it an unforgiving disease, it also is one that seems to never let go until it has stripped the person afflicted of every ounce of dignity they ever had and the families are sometimes destroyed. So much of the time the stress of caregiving causes the caregiver's to die first from the relentless stress. Try telling that to someone. The main thing with this particular disease is the guilt we feel. This gut wrenching heartbreak feeling of being unable to do absolutely nothing that will change the chain of events. There is no way to describe the guilt we feel every day of our lives and the looking back at the way we did things and beating ourselves up wondering if somehow we could have done it differently? Would it have changed anything, could we have done a better job, why did we do it that way? I could go on forever with the wondering of, Could I have done something better or different that would have increased the quality of his life? I constantly question the placing. Could I have done something, anything and not placed him when I did? I will never know because I can't change events of the past. At the time it was the only thing that I could do but I will always have to live with the decisions that, not me, but his physician made. I am losing him more and more each day. He refers to me as his mother on a regular basis. When I do allow myself a few weeks away I am consumed with guilt for not being able to maintain my sanity enough to never have to take time away. The way his face lights up when he sees me is the only bright thing I have left with him. The way he holds my hand, like a small child does with his mother and the way he holds me so close and I feel the warmth of his body. I suppose there is really no subject for this rambling. It's just that the thought of him not being here with me someday is beyond anything I can comprehend. There is no love stronger and Alzheimer's will never take that from me. It can take his mind, his body, it can take every tiny thing from me but it can never touch the love I have in my heart for this wonderful man I married.

Dean

From Linda Combs

Thank you so much for including me in The Ribbon for the last several months..... My caregiving days have ended with the death of my mother and father only seven weeks apart.... so, I no longer need to receive your newsletter.... But I thank you for the service you are to others and wish you the very best as you all continue your love-giving and caregiving journeys.....

Best regards,

Linda Morrison Combs
author of 'A Long Good-bye and Beyond'

From OldRmebrat

MOM, WHY ARE YOU CRYING?

"Why are you crying?" he asked his Mom.
"Because I'm a woman" she told him.
"I don't understand," he said.
His Mom just hugged him and said,
"And you never will"..........

Later the little boy asked his father, "Why does mother seem to cry for no reason?"
"All women cry for no reason" was all his dad could say........

The little boy grew up and became a man, still wondering why women cry...
Finally he put in a call to GOD; when GOD got on the phone, the man said,
"GOD, why do women cry so easily?"

GOD said.......When I made women she had to be special.

I made her shoulders strong enough to carry the weight of the world and yet, gentle enough to give comfort....

I gave her an inner strength to endure childbirth and the rejection that many times comes from her children......

I gave her a hardness that allows her to keep going when everyone else gives up and take care of her family through sickness and fatigue without complaining......

I gave her the sensitivity to love her children under any and all circumstances, even when her child has hurt them very badly....... This same sensitivity helps her to make a child's boo-boo feel better and calms their fears.......

I gave her strength to carry her husband through his faults and fashioned her from his rib to protect his heart.

I gave her wisdom to know that a good husband never hurts his wife, but sometimes tests her strengths and her resolve to stand beside him unfalteringly.

I gave her a tear to shed, It's hers exclusively to use whenever it is needed. It's her only weakness.... It's a tear for mankind....................

In Passing: Those We Must Remember

From Ann

just to let you know my Mom passed away Fri
mtty
ann

From Jacksana

thank you so much for the information and support that the ribbon has provided to me over time.

Mom died yesterday, Jacksana

From M2252

My door has always been open. I cared for my dad when he needed me and took care of my Mom for 10 yrs in and out of psychiatric hospitals. I'm married, have raised 2 step children and two of my own ( all here in our home). My father-in-law passed away in 94. Now Mom (my mother-in-law) is living with us. Yes, she has AD. I insisted she come to live here because I knew she was not safe in her own home alone. I more or less make the decisions in our house. My husband is just not good at making decisions. I've always done the best for him and our family. He does have a brother, who lives near by. However, my brother-in-laws wife wants nothing to do with having Mom stay with them. It's not a problem for us, like I said, my door is open. However, there seems to be some animosity building between my husband and his brother now. My husband is not good with words and has a tendency to blow up and get angry and say the wrong things. He has therefor avoided talking to his brother and his wife at all. They rarely come to visit her or invite her to their home. Still no problem. 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.

Just troubled

M2252

From MicheMcClelland

My Father suffered a stroke on Christmas Day. The stroke left him brain damaged with severe dementia. I think he was having problems with dementia for the past 6 months or more before the stroke but after the stroke I got worse. He is very aggressive and hard to handle. He went through the rehab cycle until they told us there is nothing else they can do. We have placed him in day care and me and my siblings watch him at night. He needs 24/7 supervision. He is 84. My Mom is 85 and cannot care for him alone. We are having trouble trying to keep up at night with him and care for him. He took a few swings at me and my other sister. He is still strong even though a bit unsteady. Even the Haldol and ambian and avavan does not help. He are now thinking we may need to think about a nursing home. I've read your articles and I am glad to find the information. Finances are hard because my Mom feels as though she is loosing a husband and everything she has saved.

Sorry got a little long winded when I only wanted to say thanks for being here and I would like to subscribe.

Michelle (daughter) and Mary (wife)

From AnnC731

From the little I have seen in my short visit,you all are to be admired and encouraged--that you are, indeed, making a wonderful difference! Thank You--Ann

From persnickety_2000@yahoo.com

I was recently diagnosed with EOAD and want all the information I can gather before I am no longer in a position to research the topic.

A note from The Ribbon staff to all our loyal readers:

Jamie and I sincerely thank you all for the notes and e-mails we have received recently with your thoughts and prayers. As with our caregiving, the sharing has helped us both to cope in the present and to hope for the future. We thank you also for your understanding and patience.

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DRMOM1955)