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FORUMS > Alzheimer's Disease
Replying to Topic: Early Age Alzheimer's
Created On 1/22/08 8:58 AM by Zaidy


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Zaidy
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1/22/08 8:58 AM
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Alzheimer's does not affect only the elderly. In some cases, younger people can be affected.

My wife was diagnosed at a fairly early age. Aside from the "usual" problems with the disease, there are additional complications for Torah Jews.

Taharas HaMishpacha is a major problem. Just because a woman is ill doesn't mean that the loving relationship with her husband ceases. It becomes impossible for the woman to perform bedikas. Another problem is kashrus. The frequency of mistakes in the kitchen increases, and it becomes halachically problematic to rely upon her noticing when there are errors. When caregivers are brought in to the house, they may be non-Jewish and this also creates major kashrus problems. Shabbos creates its own problems. Light switches can be taped of otherwise marked, but the person may ignore this and use them anyway. Finally, the Gemara discusses cases in which an animal enters a house that has been searched for chametz before pesach, but what of a person who is disabled with dementia? Not easy.

There are no universal solutions to these problems, but if you know any people who are affected they will surely need help.

We should share simchas.

-- Zaidy
 
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Frummy
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3/18/09 7:45 AM
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Dear Zaidy:

My husband has been diagnosed with early onset Alzheimer's/dementia. He was a successful attorney on the west coast as well as a beloved Rav. He had to give up his practice due to his illness and we lost our home and were forced to move to the East Coast to be near our children. It's been so hard....... Then 3 months ago, at a regular check-up, I was diagnosed with lymphoma. I don't know what to do; I don't want to be a burden to our children. I just need a shoulder - someone to talk to.

How is your wife doing? Do you have a large support group. If you'd like to talk.....I'm here.


Be well.

Frummy

 
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Zaidy
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4/3/09 9:16 AM
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Dear Frummy --

I am very sorry to hear of the diffuculties you are experiencing. It is hard enough to face a major illness, but you are in the process of losing the support of your husband and best friend.

I wish I had something magic to say, something that could make it all okay, but I do not. Yes -- I did find some support through support groups. The first one I attended was too big, and there was little chance to really discuss each person's situation. The second group was very valuable since it was small, but it had a limited duration. At the end, I arranged to see one of the facilitators privately for a year or so, and she helped me tremendously.

The problems come in several categories

The first is emotional -- I lost my best friend. In addition, I have had great difficulty understanding how this person can be the same person I knew for so many years. I get lonely and depressed. But -- I have learned that this is "normal" so at least I don't worry about it! Also -- crying might be normal even for men.

The second is Hashkafic -- Why is HaShem doing this to such a wonderful person who should be enjoying her grandchildren at this point in life? I have no answer, but one of the things I feel we must all learn is that we live with uncertainty and cannot understand everything.

The third type of problem is practical -- the needs of both the affected person and the caregiver. There is an excellent book that all Alzheimer's caregivers should have called "The Thirty Six Hour Day" by Peter Rabins. It is available in paperback. It is vital that the caregiver look out for themselves. There is apparently a new edition, although I have the old one. Here is a web site:

http://www.amazon.com/36-Hour-Day-Alzheimers-Dementing-Illnesses/dp/B0014JPH5E/ref=sr_1_1?ie=UTF8&s=books&qid=1238764351&sr=8-1

The fourth problem is, frankly, money. Care is expensive, and it can get very expensive. It is important to do some financial planning with a person who has expertise in the issues of older people.

I think it is important to find a professional (such as a social worker or counselor) who has experience with care giving. There are many practical details that such a person should know. It may not be possible to solve all the difficulties, but at least some progess can be made.

I am glad that you are near your children. A non-Jewish friend of mine just had a minor stroke. His girlfriend of many years (decades?) left him and he can no longer work. He lives alone and is now totally isolated. My expereince has been just the opposite, boruch HaShem. I live in a frum community and people have been coming out of the woodwork to help. My children have been wonderful. I hope you are able to find much family and community support.

I do not know your name, or who you are, but I will doven for you. Have a wonderful Pesach.

-- Zaidy

 
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Frummy
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4/4/09 9:51 PM
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Dear Zaidy:

Thank you so much for replying to mr and for you words of sympathy and support. Yes, I have seen the book, The 36 Hour Day
 
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Frummy
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4/4/09 10:11 PM
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Dear Zaidy:

Thank you so much for replying to me and for your kind words of sympathy and support. Yes, I've seen the book, The 36 Hour Day and have read parts of it. I have been in contact with the Alzheimers' Organization on-line and although they are not Jewish, they are kind and supportive people and it is good to sound off once in a while to a willing ear.

Mt husband seems to be slipping away right in front of my eyes. He's having trouble telling time now and must make diagrams of clocks to help him in this area, He refuses to shower or allow me to wash his clothes and this is a great cause of concern and sorrow to me, as you might understand. I cry, thinking of the man I married almost 44 years ago------so strong and brilliant.

I, too, am very fortunate to have the love and support of my children and grandchildren. They are there for me and help in every way they can despite having large families, k'ah, of their own. I feel guilty about taking them away from their families and jobs so much, but things have gotten to the point where I need them------especially since I've been diagnosed with lymphoma a short while ago.

I start chemotherapy Chol Hamoed and I am terrified, quite frankly. I cannot count on my husband for support or even understanding, and I do not blame him as he is in a hell of his own. I ask Hashem why this has happened to me; it's just too much to bear, but I know He has a reason for everything He does, although I cannot understand it.

My husband has been unable to work since June and so we are living on Social Security ------that's a great situation too. You know---it never rains, but pours. I pray that we all get through this hard time and we come out better people for having endured these hardships.

How is your wife and how are you coping? If you have some time, please let me know how you're doing.
Have a Chag Kasher V'Sameach and may we hear only good news in the future.

Frummy
 
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4702125952
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4/18/09 11:28 PM
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My heart is with you all and wish you much strength. I read an excellent book called The Myth of Alzheimers. Below is a short summary: (taken from the drlaura.com website).

For millions of people today, the term "Alzheimer's disease" generates fear, paranoia, angst, and stigmatization while evoking powerful social and emotional images. "A diagnosis of AD," says brain aging expert Dr. Peter Whitehouse, "can act in many ways as a death sentence of the mind, which imprisons many still-functional adults to a mental 'death row'". In his provocative and ground-breaking book, THE MYTH OF ALZHEIMER'S, now in trade paperback, Whitehouse challenges the conventional wisdom and assumptions about AD, questions the current approaches to its treatment, and brings a new understanding to everything we thought we knew about brain aging.

In Parts One and Two of the book, Dr. Whitehouse exposes what he believes to be the unsound clinical, political, and scientific framework of Alzheimer's disease and explains why it continues to be so difficult to treat or cure the condition. According to Whitehouse, Alzheimer's disease represents our culture's attempt to make sense of a natural process (brain aging) that we cannot control. Alzheimer's disease cannot be differentiated from normal aging, says Whitehouse, and there is no one biological profile of AD that is consistent from person to person. All the biological hallmarks of AD, he says, are also the hallmarks of normal brain aging. "The promise of a panacea for one of our most dreaded 'diseases' is a powerful cultural myth," says Whitehouse, "and one purveyed by powerful pharmaceutical companies, advocacy organizations, and private researchers with much profit to gain." According to Whitehouse, even scientists in the field of AD research believe that a cure is unlikely and that we need to invest our dollars more wisely by putting them toward prevention and care rather than predominantly in cure.

In Part Three of the book, Whitehouse explores preventive measures that can be taken to reduce the risk for cognitive aging, and presents examples of how to maintain cognitive vitality and a sense of fulfillment and social contribution as we age. He provides answers for when it's time to see a doctor for memory loss, how to find the right medical team, and how to develop a collaborative relationship with your physician.

Backed up by extensive research, full of practical advice and information, and infused with hope, Dr. Whitehouse's book strives to liberate people from the crippling label of AD and teach them how to best approach memory loss and learn how to age with wisdom, while preserving their quality of life.

Dr. Whitehouse answers important questions, including
Is Alzheimer's actually a disease?
What is the difference between a naturally aging brain and an Alzheimer's brain?
How effective are the current drugs for AD? Are they worth the money we spend on them?
What kind of hope does science really have for the treatment of memory loss? Are there alternative interventions that can keep our aging bodies and minds sharp?
What promise does genetic research actually hold?
What would a world without Alzheimer's look like, and how do we as individuals and as human communities get there?
For the millions of people diagnosed with Alzheimer's disease and their families, this book will help them understand why what they have been told may be incomplete, even wrong, why the treatment they are probably being given is inadequate, and most importantly, how they can get the help they need. Says Whitehouse, "Thinking about brain aging not as a disease, but as a lifelong process fraught with challenges, will change our whole approach to aging and add quality to our later years and to the lives of those we love."

About the Authors:
b> PETER J. WHITEHOUSE, M.D., Ph.D., one of the best known Alzheimer's experts in the world, specializes in neurology with an interest in geriatrics and cognitive science and a focus on dementia. He is the founder of the University Alzheimer Center (now the University Memory and Aging Center) at Case Western University. His most recent work includes ethics, integrative health care, and quality of life. DANNY GEORGE, M.Sc., works at the Memory and Aging Center in Cleveland, OH.





 
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