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!
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.
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.....
Linda Morrison Combs
MOM, WHY ARE YOU CRYING?
"Why are you crying?" he asked his Mom.
Later the little boy asked his father, "Why does mother seem
to cry for no reason?"
In Passing: Those We Must Remember
just to let you know
my Mom passed away Fri
thank you so much for the information and support that the ribbon has provided to me over time.
Mom died yesterday, Jacksana
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
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 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
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.