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Last week I began my response to a letter I received from a former caregiver, Mrs. D. She had befriended a well spouse in a different city who was in a somewhat similar care- giving situation and wanted to help her. They have spent time on the phone with Mrs. D. making herself available whenever her new friend needed her. Mrs. D. asked me for ideas of how to best go about lending support. Last week I discussed the power of talking and listening and how to avoid the pitfalls, her issues on not having a religious support group, and coping with depression. This week I’d like to address her other concerns about: burdening her children, financial worries, and where and how her friend can find outside support.
Jewish parents, as a group, try to avoid burdening their children. Well spouses often lie to their children about their own worries and difficulties in order to “spare” them. Many refuse to move closer to family who live far from home, despite their children’s wanting them to do so and knowing what a help it would be for the ill and well spouse if they did, because they don’t want to impose chronic illness on them.
But are we really sparing them? When I spoke with children of the chronically ill many talked about what a burden “being spared” put on them. They told me they know the situation is always worse than their care giving parent tells them. Never knowing what is really happening or how bad the situation really is, keeps them in a constant state of anxiety and worry.
Honesty about what is going on would be much more welcome and easier to cope with. If they knew their parents were telling them the truth, they could at least relax during the better times and be there when things got worse. Always guessing what was going on was exhausting and full of stress for them.
Children living far from their parents told me that having their parents move closer would be a relief and not a burden. Packing up, arranging for children and running home when there is a major crisis is physically and emotionally horrendous. Further, many of our children want to help their parents and welcome the opportunity to do so. We just cause them to have feelings of guilt, self-reproach and eventually remorse when we “protect them.”
Today’s economy frightens us all. It is important for your friend to investigate what programs, financial and otherwise, her husband may qualify for. There is government disability insurance that can supplement private disability payments. Some communities have income-based day care for Alzheimer patients which would help him with care and stimulation and reduce her stress when she leaves him.
Tell her to check carefully into her health coverage from work, if she has any. There may be resources there that she can tap into that will help her and save her money. Contact agencies in her community, you mentioned the name of a Jewish organization, to see what help they can add.
There are many government grants that help with the cost of house modifications if needed. Depending on your finances, it may be beneficial to consult a financial advisor who is familiar with disability issues. They can advise you on the best course of action. She should involve her children in her financial concerns. Chronic illness affects everyone in the family and everyone needs to be part of the plans for the future.
Finding Outside Support:
The Internet is a wonderful resource. Every public library will gives access to the computers at no cost. There is on line support from groups like the Well spouse Association www.wellspouse.org and the National Family Caregivers Association firstname.lastname@example.org. They can help with support, inquiries, programs and coping and may even be able to direct her to other religious caregivers or a religious support group if one exists. Government programs can be accessed on the computer as well.
She may want to access “chesed” hours in the local yeshivot for both her husband and herself. Chesed volunteers can provide some stimulating care for her husband and possibly free up some of her time by relieving her of some everyday chores. They could also give her help with Internet research for information orfrum support, the latest medical research, appropriate programs in her community, etc.
Next week I will address some additional supports experienced caregivers can pass on to those new to the experience of care giving.
You can reach me at email@example.com
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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/my-answer-part-2/2009/02/18/
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