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July 30, 2014 / 3 Av, 5774
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My Answer (Part 1)

Last week I published a letter I received from a former caregiver, Mrs. D. She had befriended a well spouse – a friend’s mother who was in a different city and was in a somewhat similar care-giving situation, and she wanted to help her. They spent much time speaking by phone, and Mrs. D. made herself available to her new friend whenever she needed to talk.


 


Mrs. D. asked me for some guidance and direction. Some of the issues raised were the lack of a frum support group, clinical depression, burdening our children, financial worries, how she can best be supportive and asked where and how her friend can find outside support. Though each of the several topics can easily be a whole article, I will try and answer them in an abridged form.


 


Talking:


Talking to someone who can understand what you are going through is huge! It helps to unburden yourself to a non-judgmental listener who has had similar experiences. “It was good to talk,” was what she told you. Don’t underestimate how much talking to you has probably helped her. You may be the only person she can unburden herself to safely. I hope it has helped you as well.


 


We so often get when we give. Your offer to be available for her whenever she needs to talk provides her with her own mini-support group. Your own experience and your willingness to share what you’ve learned can be of tremendous help to your friend. She is just beginning the journey that you have finished. But I need to add a word of caution. Mentoring care giving can be very draining.


 


You may want to set up these conversations on a regular schedule that works well for both of you and does not pull you between your own family and your friend, and pull her between her needs and her spouse’s needs. Do not be afraid to let her know when the timing is not convenient for you and set up a better time to chat or you will burn out.


 


The lack of “frum” support groups:


I have always been surprised how many varied support groups exist in church basements and how few in synagogues. Perhaps it is our compulsive need for privacy or fear that sharing our pain and difficulties will be bad for our families. We seem to always need to present as “fine,” and “fine” does not allow us to receive help.


 


There is no question that the tone and ideas expressed in a support group comprised of people from various backgrounds will sometimes feel terribly foreign to a religious person and seem totally irrelevant. Yet, there will be things said that will also be “right on” and some of the irrelevant discussion may become very relevant after 10 years of care giving.


 


If there is no religious support group where you live, try and find one wherein the caregivers are all coping with the same disease. That will increase the chance of it being relevant for you. Also, attend a few times before you decide to quit. New members first meetings tend to inhibit everyone. I also know of many “frum” women who preferred going to a meeting outside of their community where no one knows them for the sake of privacy. They felt they could express themselves more openly and honestly in that setting. But if a “frum” support group is what you are looking for, approach various Jewish agencies in your city and see if you can get them to start one. My experience was that many Jewish agencies feel there is simply no need for caregiver support groups because people have not asked for them. And, we caregivers need to tell them the need is there. Lastly,  many of the online family care giving sites will start an internet support group if there are enough people seeking it. Approaching them about a site for religious caregivers might just provide you with what you are looking for.


 


Clinical depression:


Depression is very common among ill spouses as well as their care givers. Apparently, depression caused by a situation can be treated as effectively with medication as can depression caused by hormonal imbalances. Yet, in the maze of what the doctor is dealing with, depression can often get overlooked. There are wonderful medications out today that can help both the ill spouse and the caregiver with depression, but it may be up to the well spouse to bring up the subject to the doctor. With everything the family is coping with when chronic illness invades, depression no longer needs to be one of them.


 


More on this topic next week. You can contact me at annnovick@hotmail.com.

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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.

Dear Ann,

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.

Dear Ann,

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.

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