Thursday, April 15, 2010

Heading for a home

There is a lot of talk these days about "home" and news of foreclosures and people not having homes is distressing, but a call from a very dear friend brought the word "home" into a different perspective of stress. At the other end of a teary phone call was someone I met over a decade ago in Florida, someone who has sheltered me in her home, and who has listened to my tears of rage or anguish or grief just as I was listening to hers today.

"He needs to be supervised, 24 hours a day now," she cried out to me. Her beloved husband has been afflicted with a brain wasting disease similar to Alzheimer's, but still different. Frontotemporal Dementia begins with the loss of being able to identify certain well-known items and gradually the loss extends to all aspects of speech and identification. The ability of each individual so afflicted to manage day-to-day activities varies. At first it was annoying to his wife that he would go to the Dollar Store and buy lots of trashy foods and be proud he was "saving money." Gradually she came to see that it was part of a more serious evolution of his ability to make good decisions. His situation has evolved over at least seven of the ten years we have been friends, and possibly it was beginning its erosion before that, subtly - excused as part of the aging process.

We were able to have some joy together when we visited in Utah last summer because his wife was glad he was able to count the number of deer that visit in a park near their home, he was still able to drive (although sometimes she felt as if she was his hostage as he drove for hours without listening to her pleas to stop) and he enjoyed being able to walk alone to the Church of Latter Day Saints temple nearby. A few months ago he tried to force his way into the Police department to demand that he be given his license back; and his wife's quick thinking diverted him from getting into more trouble with the law.

We cried together today when she said now he cannot be allowed to be off on his own for fear he will get lost "and since no one would suspect his condition, and they will most assuredly be offended by his four-year old behaviors and blunt speech, it's too risky." she worried aloud.

The life she imagined of getting older together as a couple and walking on the beach is over. She knows that in order to get him the full benefits from the VA, she has to become legally separated and commit him to the care of their services. She has to give up her life of full-time caregiving for being a part-time visitor. She has no other choices because there are none. The disease will continue its ravage of his brain and his capability to reason and react. The dangers are many. The expert medical team has cautioned her that there is no more time left and he will have to be sent to a "home."

We wept together today because even seven years ago we both had hopes for the future with no sense of it; how could we imagine this outcome back then? Now today we can see the sad reality. In the beginning when I still lived in Florida, I listened to my friend's complaints of his strange behavior and observations about his language skills; but I didn't know what was troubling him. Five years ago they went to the VA and got the diagnosis which explained many previously "peculiar" things.

Each time I have visited them I have seen the changes... at first he made excuses for not being able to find certain words, then he couldn't remember all the real estate deals we had worked on together, and then he asked me last year, "Do I know you? It feels like I do." I said, "Yes, our boys went to high school together. We used to live in Florida near each other." He smiled, but I could feel that it was confusing for him. He moved over and whispered to his wife, "What is Florida?"

A lovely gentle man who cared deeply for his wife when they married over two decades ago is now more like the child they never had, although she helped to raise several of his children from a former marriage. My friend is in wretched torment on so many levels and I grieve with her for the man I once knew, who did so much to help me, and now I cannot do more than listen.

Disease takes its toll on families and friends. Now the word "home" has lost its appeal; the sense of comfort is gone. The assurance of the vows of commitment have been stripped away by the government' s demand for payment, protection and shelter for a loved one which can only be guaranteed by a legal maneuver - and what about a home for his wife when all his benefits go for his care? Is it any wonder that we wept?


  1. UPDATE on this story: My friend called me today and said that some of the medical support people working with her and her husband have said it is "Ridiculous for you to tamper with your marriage vows to satisfy some government entity." So they have begun to help her find other solutions to keep her husband with her, while still giving her some daily relief from the 24-hour care that is becoming necessary.
    The assistance from other members of the Church of Latter Day Saints, along with the medical team, are "giving me hope for better solutions than I had last week," she said on the phone. "We will be looking for his children to take on more responsibility and for every possible home health support solution available to keep him here as long as we can," she added. "I hope my story brings hope to others facing similar challenges with their loved ones - yes, it's inevitable that he will have to be in a "home" eventually, but with help we can delay it; and maybe it is all about involving the community - our family and friends - in not sacrificing our beliefs for money."

  2. A friend whose mum and grandmother had alzheimers is convinced she will get it sooner or later and we joke about it because that's how we deal with things. But the reality of it is so harsh, she has already altered her will so that our government can only claim half of it should she ever need to go into a care home. Warm wishes to your friend.