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I have been reading your column in The Jewish Press for quite a while and enjoy it very much. It has been very helpful. For many years, my mother, a”h, lived with us while she was going blind from glaucoma and becoming demented from Alzheimer’s. G-d bless my wonderful husband and family for helping to love and care for her. She was nifteres last month.
A friend put me in touch with his mother, and it is about her that I am writing. I have never actually met her or her husband. He has a host of medical issues, along with a diagnosis of Alzheimer’s. She is suffering. I asked if there is a support group in her area, and she said she had attended one, but it was a general, non-Jewish group, and did not jive with her Torah way of life. Having attended an Alzheimer’s support group here, I totally can understand that. I did pick up a few “tips” at the meeting I had attended. The atmosphere and general way of thinking, however, was not compatible to my way of thinking.
My friend’s mother does live in a frum community, but apparently there is nothing available there. She works, during which time her husband is left at home, and basically “does nothing.” He is clinically depressed, has heart issues, and is sometimes paranoid. He hasn’t worked for a few years, is on disability and she is worried financially on top of everything else. On the other hand, during the course of my one conversation with her she informed me that once a week, her husband can and still does teach a shiur (with the help of a family member). When their married children come to visit, it livens everyone up, and they do visit as often as they can. But she does not feel that she can “burden”them with her and her husband’s issues, as their children have young families and live at least a couple of hours away, if not more.
Can you advise me as to any direction to point her in? I told her to feel free to call, because I know that just a listening ear is helpful – and I mean it – I so feel for people who give care. I read a book once, called The Best Friends Approach to Alzheimer’s (D. Troxel) which, as I remember, seemed to help a lot – the attitude was very upbeat.
Any other book I had been referred to was so awful in approach. They were very depressing. She told me, from what she picked up (two things) from our conversation was, that it was good to talk, and that she needed to accept the fact that some things would just not “get better or change.” Actually what I had tried to tell her, was that once a certain degree of acceptance occurs, that itself opens possibilities for good things to happen that are possible.
I also recommended she call Ohel Family Services for a referral, since they are the only “group” I know about. I told her that I would be writing you, as I don’t think she has easy access to the Internet.
I don’t want to say the wrong things. I am reluctant to send her a book that I did like very much (Taking Care of Mom, Taking Care of Me, by Devorah Schloss) because although it’s so upbeat, all the relatives described were at the “end-of-life” situation! My friend, B”H, seems at a totally different point.
(She) is suffering because her husband is still relatively young, and all her hopes for him at his age seem to not only be dashed, but she feels overworked and, sometimes, abused -(emotionally and verbally). The money is tight, and she is worried (it) might run out very soon.
So here are two questions: what can I do or say to help (or not do or say), and can you offer any referrals?
Thanks so much for reading this and I will look forward to hearing from you.
Thank you so much for your letter. I am sorry for the recent loss of your mother a”h.
I’m very glad that your family was so helpful when it came to caring for your mother. It is obvious from your letter that your journey as a caregiver has taught you a great deal. Perhaps more than you are even aware of. Our experience as well spouses or care givers for family members, is a tremendous resource. Your willingness to share it not only turns a difficult experience into something positive but it makes you a mentor. All this is something you need to be proud of. It is also clear that you have already been a big help to your friend. You raised some very common and interesting questions in your letter. I will try to answer them the next several columns.
I can be reached at firstname.lastname@example.org.
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When one is blind one learns to use Braille to read. When one cannot walk, a wheelchair gives mobility. Sign language allows a mute person to speak and ocular implants assist in hearing when one is deaf. These are all compensatory strategies that help a person function despite his disability. But compensatory strategies are not just for physical problems. Understanding our psychological weaknesses and setting up our lives to ensure that we are not tempted to repeat our past mistakes, is as necessary as any aid to the disabled.
Well spouses have often discovered that their friends and relatives, despite their closeness to the situation, often don’t realize the tremendous emotional impact living with chronic illness has on the family. With the best intentions, suggestions, ideas and criticism are offered, based on the non-experience of those with healthy families. Even when the good intentioned get a taste of the difficulties, it is sometimes not enough for them to then identify and understand what the family of the chronically ill must face on a constant basis.
Over the past two weeks I have shared letters from a therapist and a well spouse. Both of the letters gave personal insights into the process of losing hope, how we react when that happens and some ways of coping when test scores, diagnosis and just simple repetitive behavior indicate that change for the better is impossible.
I’ve read your last few articles on psycho-neurological testing (Oct.8-22) with interest. As a therapist who has counseled couples dealing with chronic illness, I’d like to give you another perspective.
Your articles on the Neuro-Psychological Testing were right on (October 8-22). My husband underwent testing twice and your articles explained it things exactly the way they were. Besides the test, we also tried therapy.
Very often when we can’t face our big hurts or big loses we focus on the little ones. We can discuss those. We can cry over the small loses, be angry at the smaller hurts even though it may look trite and sound ridiculous to others.
Over the last two weeks we have been discussing one way in which well spouses can determine whether behavior displayed by their ill partners is caused by their illness or is a way they have chosen to act. We have focused on Psycho-Neurological testing, what it can tell us, as well as its pros and cons.
Last week I discussed a question that haunts many well spouses: not knowing if the difficult and often inappropriate behavior frequently displayed by their partners are caused by the disease and therefore not-controllable, or if the behavior is a choice the spouse makes and can therefore be changed. This doubt can be the source of much frustration and many marital disagreements. One way of alleviating this doubt is by having a psycho- neurological work up done. But that path is not so simple.
Printed from: http://www.jewishpress.com/sections/magazine/a-letter-to-seek-help-for-a-friends-mother-coping-with-a-disabled-husband/2009/02/04/
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