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Alzheimer's

With Mayo Clinic health education outreach coordinator Angela Lunde
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January 11, 2008 4:14 p.m.
'You suffer because you love'
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By Angela Lunde

For my first entry in 2008, I am sharing something I find very powerful and profound. These words are from Dr. Dan Gottlieb, a psychotherapist. He shared them in his keynote address at the Frontotemporal Dementia Caregiver Conference in 2005:

"You (caregiver) do not suffer because of them (person with a dementia). They have a disease, a neurological illness, that's a fact. But that's not why you suffer.

You suffer because you love. If you did not love, you would not suffer. And the more you love, the more you suffer. Problem is, when you try to do something you cannot do, or be something you cannot be, the guilt, shame, anxiety and fear makes the love go underground ... and you can't feel the love anymore. Love is learning to live with your helplessness in the face of your loved one's suffering."

I look forward to our dialogue this year. I hope you find some relief in writing your own thoughts and some comfort in the reading the words of others.

22 comments posted
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June 26, 2008 4:43 p.m.
I give-up my job just to take care of my husband,because I, love him he is my life.,married to him for 40 years. its just like a fairytale to me. there are time that I hate myself,its not that I, dont want to care for him, but I miss those happy days of our life.he still remember my name. being with him everyday at home is good memory from him.
- Rebecca
April 15, 2008 9:18 p.m.
Just discovered this site. How comforting to hear the comments. I am an only child w/grown children in other states. I have been solely responsible for my Mother for the past 20 yrs. She is 96 and was diagnosed w/moderate Alzheimer's about 8 yrs. ago. She now lives in a nursing home and is angry, depressed and miserable there. She falls frequently and just returned from the hospital. The hardest thing is knowing how to relate to her. She always recognizes me and can be very alert, cognizant and rational at times. Other times she is delusional and is convinced there is a mother cat and kittens who live in her room. (She always loved animals). She's confined to a bed w/rails and an alarm and is angry and miserable at being so helpless. I cannot express how I grieve over her every day. Having to live out the remainder of your life in a nursing home without any independence or dignity or interests and without your beloved pet causes me such despair. I only hope I will die before I have to live like that.
- Dale
April 11, 2008 11:07 p.m.
Doann, my heart goes out to you. The only times my mother has acted like that, it has turned out that she has had a urinary tract infection, without any obvious symptoms. When it is treated, she stills has alzheimer's but is not terrified and hallucinating. Take care
- Mary
April 2, 2008 1:36 a.m.
My Mom, my best friend and a truly incredible woman, was diagnosed with AD just a few months ago. She'd had an MRI 6 months ago for an injury and, because she has macular degeneration and is practically deaf, she was terrified. She thought they were trying to kill her. She just turned 91. It seems that the AD has accelerated since the MRI. Could trauma have made this happen or does she have another type of mental or emotional disorder? She's in an assisted living where she's very happy and I'm afraid to move her into a nursing home or AD facility. She's stopped showering and won't let the caregivers help her. She's such an incredible woman who has never asked for anything. She's prayed every night since she was a child, but never for herself. She's been hallucinating and tells me all about what (and Who) she sees. The doctor and people I know who have been through this tell me that she doesn't know what's happening to her, but I'm afraid she does. She asks me if she's losing her mind or if she's seeing things. I think she's afraid and confused and I don't know what to do to make her feel better. I've been her caregiver/assistant for 16 years and this is the first time I don't know what to do. I know that I'm losing her and I don't know what to do. I read all the other comments and they all feel the way I do. Help! i just love her so much I hate to see her go through this.
- Doann
March 5, 2008 10:11 a.m.
My grandpa was diagnosed with Alzheimers disease. It has been quite a struggle. My husband and I try our very best to cope with the situation. Alzheimers is not the greatest. It's hard to see him like this. I really try to visit him as much as possible. I have a alot more life ahead of me and I need to help him as much as possible, but I also need to deal with my career. I care for this man so much, I just hate seeing him like this.
- Bella
February 26, 2008 6:31 a.m.
My father (67) was diagnosed with Alzheimers a year ago and I can not believe how in just the past year he is not the same man. He struggles so much with everything he tries to say and do. I believe he has had it for quite some time. It is heartbreaking for me to see him like this and it is only the beginning. I see him 5 days a week at this point and always leave brokenhearted just watching and looking at my father struggle with whatever he is doing. My father has always been a kind and gentle hearted human being, and now the anger that comes out in him is not him. I have a long road ahead of me, but I don't think I'm mentally prepared, but will deal with everything as it comes, because I love my father so dearly. I will do anything for him.
- julie
February 16, 2008 1:11 p.m.
My Mother, My Best Friend, was diagnosed with Alzheimer’s at the time I was studying Echart Tolle’s book “Power of Now”, as I was trying to learn to live in the ‘Now’, my mother was going to be my teacher. My first lesson was to accept. Not easy, but I had a choice (this is the fork in the road) to remain distraught or to embrace, what I could not change, I chose to embrace. She showered me with lessons of ‘true’ importance, that nothing matters but ‘Love’. To get out of my world, where she could not enter and enter her world. By my entering her world we had such joy and fun. I was able to receive her gifts of final lessons with great gratitude and my gift to her was ‘letting go’ with knowing I would be alright. Life demands: acceptance, embracing and letting go. Are we being caring when we try to keep them here? For who are we thinking of? Is it for them or for us? I recently read: That people that are ill, suffering great pain or dying , they often call out for their mothe
- Marcia
February 16, 2008 12:25 p.m.
My Mother and Best Friend, who lived from age 86 – 90 years with Alzheimer’s. I want to share some of the wonderful gifts I received along the way. I feel that we must change how we view these diseases or we will never get the final gifts they are trying to give us. The first gift was when she was diagnosed with Alzheimer’s and at the same time I was studying the book “The Power of Now” by Echart Tolle. She was to become a living example of what I was trying to learn………Living in the Now. The second gift was when she left her home and never looked back. The home she loved and treasured, not missing the jewelry that was so much a part of her life, loosing her glasses, not missing them and being able to wear someone else’s glasses and as I watched others that lost their hearing aids and yet they seem to hear. Nothing matters – all those things that have been so important no longer mattered. The third huge gift is the meaning of ‘relationships’. It is all companionship. We a
- Marcia
February 7, 2008 9:38 p.m.
Only time gives relief. You still love him and miss him, and ache for him in his pain and humiliation of the disease...but somehow time heals over your deepest wounds, and life goes on...and your love for him goes on also...it's been 18 months.
- Marcella
January 31, 2008 2:44 a.m.
My husband died of alzheimer's on January 4, 2008, at 3:43 A.M.. Bob had been in a nursing home for seventeen months. He couldn't speak for the last few months of his life, nor did he know I was his wife of 55 years, our anniversary on July 26, 2007. What a horrendous disease it is. I am grieving his loss and only want to hold him once more. Is this selfish? I prayed that the lord would take him as he was in pain and suffering, finally going into a coma the last two days. Why is my grief so overwhelming then? He is out of my sight now and I no longer have that purpose in my life to plan my day around. I hope he knows I did all I could for him, and that he now knows that i am his loving wife. My tears come as I write this. Joan C
- Joan Carpenter
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