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July 28, 2014 / 1 Av, 5774
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When What You Can Do Changes: The Nursing Home Alternative (Part V)

I have been writing about the need for caregivers to acknowledge the changes in themselves as their physical and mental capabilities change. The failure to see your limitations cannot only affect you adversely, but can also result in unwitting abuse of the person you are caring for. I wrote about the need to look for alternatives in how you have been caring for your partner, as well as the participation of the ill partner, if possible, in these new ways of caring. But as chronic illness progresses and we as caregivers age, many of us reach the point of no longer being able to adequately meet the growing needs of our spouses.


No matter how we have feared and dreaded this moment, we know we must look at that final alternative, the care facility. For those of us living with chronic illness in our home, we know it is the final alternative. The nursing home is not a temporary placement. There is only one exit door and it is not one that we, or our spouses, want to think about.


Placing someone in a nursing home changes everything. The tasks of caregiving do not disappear, but they change to something more emotional and less physical. Often, the chronically ill resist the placement and the well spouse is engulfed with feelings of guilt. Usually, all other alternatives have been tried and there is really no other choice.


The best scenario is when the ill spouse sees the need for the placement and agrees to it. This happens in only a small minority of cases. In one such situation the ill partner told me that he was only changing where he slept. Once he was washed and in his scooter he kept (as much as possible) the same routine he had before the placement. He used the public adaptive transit system to “go home” for the day and return to the facility in the evening.


Sometimes, a doctor or social worker will help a well spouse convince their partner of the need for the placement. Mostly, however, the well spouse has to deal with the decision of placement alone – with no help, and even less support. One well spouse, who had recently placed her husband in care after 15 years of caregiving, had him home for a family gathering. When it came time to return to the facility, he grabbed on to the doorframe and refused to go back.


Her guests, some of whom had placed parents in care, asked her to reconsider and take him home again. She told me that there was no mention of whether she’d be able to care for him at home. They just wanted their discomfort dealt with without regard for her reality.


Often, because the ill partner didn’t want the nursing home placement, visits to spouses can be awful events. One well spouse told his support group that each time he visited his spouse she would be verbally abusive. Though he visited her every day, she harangued him for not visiting enough. She accused him of all sorts of horrible things. He dreaded the visits and left more depressed each time he went. Then, at a support group meeting, the speaker talked about how to get rid of the negative energy that sticks to you after just this type of encounter.


The speaker told him to stop just outside the nursing home, before he gets into his car, and literally rub the negative feelings off of his body. He was to take his hands and rub the feelings off of his neck, his arms, his chest, etc. just as if they were something he could see and feel.  The well spouse could not relate to this idea, but the next visit to his wife was so terrible, he thought he’d try this technique.


Much to his surprise he felt better. He told me it was like taking off a coat of these feelings and leaving it in the parking lot. He could not believe how he began to feel better over time and was able to deal with these visits in a much better frame of mind by using this simple technique after each visit.


Nursing home placement is a difficult and painful decision. It only comes when all else fails. It comes when you recognize that keeping your spouse at home is something you can no longer do safely. Without placement, neither of you will be able to go on with your life. Unfortunately placing a spouse in care is not as supported as placing a parent in care, and if you wait for the support from those around you, it may never come. You need to realize and accept that you are doing what is best for both of you, and find strategies to deal with the fallout.
More about selecting a nursing home 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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