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My Answer (Part 3)

       The last few articles have dealt with advice that an experienced caregiver can pass on to someone who is new at it. The articles were prompted by a letter I received from a former caregiver who was trying to help out a friend who recently found herself in a similar caregiving situation.

 

   Some of the issues she raised and which I addressed in the last weeks were:  How best to support her friend, what she can say, the lack of availability of a religious support group, dealing with clinical depression, reluctance to burden children, financial worries and where to get outside supports from agencies, etc.

 

    Today I’d like to address some of her other concerns.  The experienced well spouse was reluctant to make some suggestions to her friend, feeling that though they worked for her they might be inappropriate in the friend’s situation  - or worse, cause further depression. She was also concerned about the abuse, emotional and verbal, that was starting to emerge at the hands of the ill spouse.


 


Making Suggestions


 


        “I am reluctant to send her a book I liked very much (Taking Care of Mom, Taking Care of Me) because although it’s so upbeat, all the relatives were “end-of-life”!    My friend B”H, seems totally at a different point,” was what Mrs. D. wrote in her letter.

 

    It is very difficult to know how someone will react to our suggestions. Everyone brings their own experiences to whatever they engage in. That experience determines whether they will react positively or not about what you are suggesting. There is no way for you to predict their reaction. That is why I feel strongly that we always let adults make their own decisions about everything in their lives and never make decisions for them.

 

    Well spouses are powerless in so many ways because of the illness of their spouses. To make decisions for them about caregiving just takes away what little power they may have left. What you can do is to share your reasons for your recommendations, (whether it is a book, an action plan or even a specific doctor). Tell them why something may have worked for you and share why you are hesitant to recommend it to them. And then step back and let them decide what they will do.


  


Emotional And Verbal Abuse


 


     Unfortunately, it is quite common for well spouses to experience abuse at the hands of the loved ones they are caring for. This should never be allowed or even tolerated and must be nipped in the bud. The first time we experience abuse and just ignore it, we are giving it license to escalate. And it will escalate. Illness does not give anyone the right to be mean or nasty to those around them. Illness is not a license to mistreat another person. If you allow the abuse because “she is sick,” or convince yourself that “he really didn’t mean it,” the abuse will only get worse and become more frequent.

 

      It is OK, under such circumstances, for well spouses to be angry with those they are caring for. It is important that you express that anger at the inappropriate behavior. If you’re visiting your spouse in a facility and she becomes emotionally abusive, that is your cue to leave immediately. Make sure to tell her why you are leaving and that abusive behavior is simply not going to be tolerated.


 


    If you are at home, leave the room or the house if possible. Do whatever you need to (short of being abusive yourself) to make it clear that you will not just stand by and allow yourself to be treated in an abusive manner. 


 


One Last comment


 


     The letter writer said, “Actually what I had tried to tell her was that once you arrive at a certain acceptance of your spouse’s illness, that itself opens possibilities for good things to happen that arepossible.”  How true that comment is and how important hearing it is – for all of us on this journey of chronic illness. Whether you are an ill spouse or her caregiver, acceptance of the situation marks the beginning of getting on with your life and opens the possibility for positive things in the future.

 

    You will not be open to seeking solutions or trying them if you have not accepted “what is.”  Wishing illness away or grieving for the life you lost is a necessary part of the adjustment to a spouse’s illness, but those feelings must eventually be left behind if you want a future. You cannot look at how to make your life better or happier until you have accepted the problems that surround you. Whether it is modifications to your home, to your relationship or to your lifestyle, acceptance is indeed the first step to any positive experiences in the future, whether individually or as a couple.


 


You can reach 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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