Wednesday October 24, 2012

The pay is usually $0, the hours are unending and the toll it takes on people and families can't be measured. Yet, there are some rewards and that helps to keep people doing what they do.

Caring for a family member or friend who is chronically ill and/or suffering from some degree of dementia in your home is the toughest job in the world. I am not saying this only from the perspective of a health care professional but also as someone who has done the job on a number of occasions.

It helps to have a health care background, but it is not necessary. You can learn the things you need to know fairly quickly and community resources are readily accessible. What is of prime importance is a commitment to do whatever it takes to provide comfort and care and an unending supply of humor and commons sense.

Armed with all of the right tools, a caregiver will still be stressed out often and find themselves asking the question, "What have I gotten myself into?" more times than they wish to tell. They often learn to maintain a constant internal dialogue that reminds them that they are doing the right thing and that their friend or family member is better off with them.

One of the toughest things to deal with in this 24 hour job is all of the unplanned for happenings. There are many time when you just have to hope that your instincts are good and that things will work out.

My wife and I took care of her father John for close to a year. He had what was diagnosed as multi-infarct dementia. It meant that his confusion about time, person and place remained pretty constant and he did not seem to get worse over time. There were still plenty of challenges, but things were made somewhat easy because he had a mellow temperament and he carried that with him into his journey with dementia.

It was an early morning and my wife and I both had to get to our jobs as visiting nurses. It was my task for the day to get John to The Gathering Place adult day care. I had been getting him in the car and driving him there in the morning.

On this particular day he decided he did not want to go. I told him where we were going and he said he did not want to go. He got a bit defiant and no matter what I did I couldn't get him into the car. After about an hour of struggling I gave up, called my boss and told her I couldn't make it to work.

This is when I learned that lying is one of the essential tools you need to use when dealing with someone with dementia. There are times when you have to tell them what they want to hear, once you figure out what it is that they want to hear.

In John's case I told him we were going for a ride and when he asked where we were going I changed the subject. I just kept repeating that he needed to get into the car. That tactic worked and my wife and I learned to lie when necessary.

Then there was Gerry. He was a former visiting nurse patient whom we had cared for. After that relationship ended we became support people for him. We became friends. Gerry had been diagnosed with lung cancer and was living alone in an apartment in Bellows Falls. He knew that as he got sicker he would have to move to a nursing home. It was something that troubled him more than the prospect of dying.

We told Gerry we would take him in when he got to the point where he could no longer live alone. Unfortunately, as a result of chemotherapy, Gerry had a stroke and he could not talk and the entire right side of his body was We knew that Gerry had some degree of mental illness, but what we didn't anticipate is that the expression of his mental illness would be more severe than the progressive death from lung cancer. The physical care was difficult, but it was something that two nurses could handle.

The real struggle came when we realized that we had to treat Gerry like a two year old kid because that was pretty much how he was behaving. He had become the two year old version of the rabid dog Cujo in the Stephen King story. (Perhaps a bit of an exaggeration, but it felt like it at the time.)

All of you who do this work may not be rewarded in any material way, but you have to know that very few people will reap the unique kind of rewards that will come your way, even if you are too tired or burnt out to appreciate them.

Richard Davis is a registered nurse and executive director of Vermont Citizens Campaign for Health. He writes from Guilford and welcomes comments at rbdav@comcast.net.