Alzheimer's disease

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• December 5, 2012 9:39 p.m.

  Ella: Like you, I look back in wonder at the years I have spent caregiving. I have no regrets. The journey is long and hard, but I have learned much from it. I have been caring for my husband for 10 years. As the disease has progressed and he has become virtually oblivious to his loss- and oblivious in general, the burden of caring has lightened in some ways. He is mostly joyous, and caring for him has its joys though it is physically very taxing. I have help and emotional support from paid caregivers. I manage well and apparently appear to do what I do effortlessly, as over the years family and friends have mostly stopped coming, rationalizing their distance by saying they prefer to remember my husband as he was. About the latter, I am mostly philosophical, though sometimes get angry. My sense: the disease goes on so long that for those who are not living it, it becomes "old news" and no longer an issue of ongoing significance. God's blessings to all of us who live this disease with our loved ones until the end.

  - Linnie

• December 4, 2012 7:10 a.m.

  to Ella: to read a book is a thing. But it is not all. In the daily life the human with Alzheimer desease have to do anything in the day. All the thing he can do training for his brain. Because the brain cells are working in connecting, it is the input. And then the output is better. All the things we are doing, is good for our brain, but not for his brain. So we have only to help a little bit. But his doing is not like our doing. So we have to help in his line, with speaking in his words.This is also connecting the brain from the human with Alzheimer desease. His words are the key in his brain. The cells are working better, because the biochemicals are als better. For more questions, please write. I am a caregiver for long time.

  - Susanngab

• November 30, 2012 7:27 p.m.

  Dear Betty, I just took a few minutes to tearfully seek our Lord's strength and comfort for you. I KNOW how you feel. My husband is now in a Nursing Home so I am less weary but the pain is still there! He doesn't know me and has to be sedated to quieten him or he causes havoc with the other residents. I, too, pray that the Lord will welcome him home before he becomes vegetable-like. I visit him every day but I do take time away to visit family on occasion. I find that that renews my energy. I thank the Lord for the 51 years we have had together and find that my love for him continues to grow. May the God of all comfort encourage and strengthen you for the job He has given you to do.

  - June

• November 30, 2012 4:36 p.m.

  Dear Betty, I could have written your letter...my feelings exactly. My dear sweet husband passed away 4 mos. ago after 10 yrs. with this horrible disease. I miss him so much, I was always so busy and now....I have time on my hands. I'm not young anymore and don't care to go places and do things. My health has gone downhill. I don't regret being his caregiver & wish I could have done more, had more faith & patience. You MUST find a way to get a few hra. for yourself. I have 6 awesome kids and their spouses so I did have support, but he went everywhere I went, (even to the bathroom!) We were married almost 57 yrs. He was a farmer so he was home 24/7 and for breakfast, lunch, & dinner.....he was a big part of me. And when he was in Hospice the last few days of his life, I begged God to take him. I will pray our Lord gives you and all caregivers the strength they need. (The "36 HR. DAY" was most helpful for me, among others) Mary

  - Mary

• November 30, 2012 1:24 a.m.

  I marvel that so many people are thrust into this awe-full situation which goes on for years and years, yet we must each forge our own way. What a test of character or faith or resilience! Congratulations to all of us for persevering. Thank you to the authors of the personal and informative books usually written out of a caldron of woe. For me, so many years of reading (12 years) that the books no longer speak to me. They are old territory. Some members of my support group are in disbelief that death has come to their charges but they keep attending, still stunned by how they've spent so many lonely years. The new ones who come in the early stages are full of grief and anger and I don't have much to offer them anymore. Once I did. Now I want to leave it to the social workers. So I guess it's time to graduate from Support and just move on. I'm so thankful that my husband's angry years are gone and that our time together is peaceful and loving, though still requiring physical stamina and patience I never thought I'd have at 80. I look back at the woman of 68 I once was and think it's quite amazing that he and I have made it here with dignity. Count whatever blessings you can find on your incredible journeys. It's worth the trip even though you didn't want to get on the train. It will be all right.

  - Ella

• November 29, 2012 4:19 p.m.

  "The 36-Hour Day: A Family Guide to Caring for Persons With Alzheimer Disease" has been my bible through several years of caregiving for my wife at home and still actively consulted now that she has entered an assisted-living Alzheimer's residence.

  - Terry

• November 29, 2012 4:00 p.m.

  Dear Betty, The first three years of my husband being given the diagnosis of early stage of Alzheimer's disease were very turbulent for me... emotionally and mentally. He was angry everyday and I had to live with that anger. People who give advice are always around to tell you their advice,but truly, it is the carer who is the only one who goes through the turmoil of trying to care,love, and understand the person with the memory problem, and at the same time, trying to live intact through all the daily unexpected experiences the carer encounters. I found that it is prayers that have helped me cope with my husband's situation. Prayers have extended my love for my husband and increased my understanding of our situation. Each morning now, I wake up to thank God that I am alive and ready to do what is in store for the day, and each night, I thank God for the day that I was able to handle. Each day is a new day. I try not to dwell on the past, and I try not to think to much of the future. Handling each day that comes makes it easier to live.

  - Paola

• November 29, 2012 3:42 p.m.

  Betty, I do sympathize with you. I have experienced the same feelings. I have had to put my husband in the hospital in a behavioral unit and look for a nursing home to place him in. He is in his 50's and this is truly heartbreaking to me. I sometimes pray that the LORD will take him before he has to go through anymore. I will pray for you. The holidays are very challenging this year.

  - Rose

• November 29, 2012 2:22 p.m.

  Dear Betty, We are with you in faith and prayer as we all go through each day. Our days are one at a time. Please try to have some get-away time for you. It does make a difference, even a couple hours a week.

  - Ruth

• November 29, 2012 2:16 p.m.

  Another great book for caregivers; The 36 Hour Day by NancyL Mace, M.A. and Peter V. Rabins,M.D.,M.P.H. I am on 3rd reading, get more out of it eaqch time.

  - Ruth

• November 29, 2012 11:37 a.m.

  The 36-Hour Day : A Family Guide to Caring for Persons With Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life is a great book. After my mother was exhibiting signs of dementia and it was clear that she wasn't herself, I read this book and found a lot of practical information that helped me cope.

  - Bev

• November 29, 2012 11:36 a.m.

  I'm trying hard to "build happiness, not resentment" each day and especially during this Christmas season. Resentments, pain, and challenges seem to pile higher and higher each day. Yesterday, my once very dignified, fastidious husband peed in the neighbor's yard. How humiliated he'd be if he were aware! I know that my God is "bigger than the pile," but many days I'm not sure how much longer I can do it. Every step ahead seems to lead to two or three back, and I'm tired...tired of having to always be there, do it all, plan it all, fix it all...you name it. I have prayed that the Father would allow me physical, mental, and emotional strength along with the faith in Him to be able to take care of my husband until the day He calls him home to be with Him, that He would release him from this eternal confusion and pain before He allows this disease to make him a bedfast, helpless man, and that I would be found faithful. I ask all who read this blog to pray with me, as I will pray with you. Our God is ALWAYS faithful!

  - Betty

• November 27, 2012 9:10 a.m.

  Nominated for a Pulitzer Prize, “Conversations with Nora” follows the journey of two sisters, Allison and Louisa, as they each struggle to understand the grip of Alzheimer's on their family. The novel, inspired by a true story, takes the reader from the sisters' first realization that something is wrong with Mother; through her agonizing denial and efforts to thwart the daughters' attempts to care for her; and then plunges the reader along with the entire family into the dark and confusing maze of dementia. http://www.amazon.com/Conversations-Nora-Familys-Journey-Alzheimers/dp/1468058983/ref=sr_1_1?ie=UTF8&qid=1353961298&sr=8-1&keywords=elaine+lohrman

  - Bill