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.
“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.
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