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.
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