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September 2, 2015 / 18 Elul, 5775
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When What You Can Do Changes (Part III)

Well spouses need to re-evaluate often their situation and how they are relating to their loved ones.  They need to be acutely aware of changes in themselves and how they are able to care-give.  Angry retorts, refusal to return words of endearment, excessive use of force during care giving are all signs of overload and resentment. They are warning signs that the caregiver has reached a point that requires change, immediately.


But how do you suddenly change your role and not neglect the person you are caring for?  First you need to realize that it is not neglect, but care of your ill spouse when you put support in place for yourself and make changes in your care giving routine that makes you less resentful. Everyone benefits; especially the person you are caring for. As you decrease your burden, your anger lessens and your relationship with your spouse can be more pleasant.


Evaluate your stresses. What gives you the most stress? Is your visiting the hospital or care facility every day making you angry about losing your own life and having no time for yourself? Are your visits becoming negative experiences for the both of you? Wouldn’t visiting less often, but keeping the visits enjoyable for you both be better? Which would you prefer if you were in your spouse’s shoes, an angry visit daily or a pleasant time together a few times a week?  Taking a bit of time for yourself, instead of daily visits, could help both of you enjoy your visiting time much more.


Exhaustion from lack of sleep because of your spouse’s uncontrollable shaking limb or other symptoms of his illness is very common.  Perhaps your exhaustion comes from not being able to sleep until his care-worker puts him to bed at night. Is sharing a bedroom, and therefore sharing the symptoms of your spouse’s illness making you angry and resentful? Perhaps separate bedrooms would help.


There is a tremendous emotional loss in no longer sharing a bedroom. It requires an acceptance of where you are in your marriage that you may have tried not to think about.  But being able to sleep through the night and feeling refreshed in the morning may give you back more than the illusion you lost. It may make your days together easier and more pleasant.


If your anger is spilling over because you need to keep to your spouse’s schedule instead of having one of your own, there may be an alternative.  When you finally get to go out as a couple and you have to leave early (even though you are enjoying yourself for the first time in a long time) because of his adaptive transit or care-giving times, resentment and anger at your spouse may result.


The anger is at the situation, but after experiencing this loss for years, the recipient of the anger can be your spouse. Do you have to drive him and/or accompany him everywhere he needs to go? Perhaps using a cab or care van to keep him on his schedule while giving you some flexibility to enjoy your evening is an alternative worth considering.  Seeing you happier and more relaxed and relating to him with less anger will be something your spouse will value as well as you.


Using a care van can also help you avoid the difficult task (that gets harder with age) of transferring your spouse from chair to car, folding the wheelchair, putting it in the trunk and then repeating everything in reverse when you get there. The care van driver will not only deliver your spouse to the destination but will also take him into the destination. This is no small plus during excessive cold, snow, rain or heat.


Most well spouses are constantly on guard for changes in their loved one’s illness. Always ready to appropriately make changes in our care giving, as the need arises. Keeping the same watchfulness on ourselves, as caregivers, is just as important over time, but rarely done. 


Making sure we can still perform the tasks we have done over the past decades, without harm to our health or mental wellbeing and without the spillover of anger or resentment is just as important to the sick person as it is to the well spouse.


But making changes when the well spouse’s physical or mental health changes is rarely done. It is certainly not encouraged by people around us. However, it is something that needs to be done. Without it, the care giving will begin to lose its care and may, G-d forbid, become abusive. Ignoring the changes that we have undergone can only create a situation that cares for no one.


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.

Printed from: http://www.jewishpress.com/sections/magazine/when-what-you-can-do-changes-part-iii/2008/08/20/

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