I will admit, that I am a Tar-Tar when it comes to some stuff, but I have read the first Post a few times, and STILL can't figure out what was said. Go ahead, and tear me up on-line if need be, but I am just wondering??
Okay - and no I don't think you're a tar-tar. The following is a little difficult to write, but if it's not clear to you, it won't be clear to others, so here we go.
People who spend a good bit of their lives caring for ill people, particularly in nursing homes or (as family members or hospice folks) in home situations, have unique life experiences of an emotional nature that isn't well understood by people who haven't had the same experience.
Some caregivers, like family members who care for a permanently ill family members, have their lives altered in a very profound way by the situation.
I, for example, used to have hobbies and a flexible schedule and the ability to travel. My home life consisted of fun time with hobbies and less-fun time doing guy chores. When I was cooking I was usually grilling out, though I was never too much of a slouch in the kitchen.
I was on a business trip to Texas when I got the call that my wife had been diagnosed with Multiple Sclerosis. That was in 1997. By 2004 she was put on Social Security Disability due to the loss of mobility and muscular control, and in 2007 she woke up paralyzed one morning and asked to be put in a nursing home. In 2009 I took her back out of the nursing home and spent $30,000 of my own on medical equipment to make it possible for her to live at home. Home was no longer our house in Hollywood, which couldn't accommodate her wheelchair and bed. It was a rented condo with an open floor plan.
My lifestyle had gradually fallen apart as her condition gradually worsened, and now I was the caregiver - meaning: bathing her, dressing her, helping her go to the potty and cleaning her up afterward, getting her in and out of bed, managing her medications and treating the multitude of quirky medical problems that crop up with bedbound or wheelchair bound people with immune disorders. I cooked, did the housecleaning, managed the family finances, managed doctor appointments, etc. And I also held down a 35-hour-a-week job at NAVAIR.
Things are a bit better in that our weekday caregiver is our daughter, but I pay her the going rate for her services - about $500 a week. I still have no freedom and still can't do the things that need a guy to do them, I still can't travel in association with my job (a constant struggle to manage).
And their are some heavy emotional issues, too - some too hard to understand for anyone not in my position. For example, this weekend she (my wife) had an exacerbation of uncommon cruelty. She had already lost the use of both legs and one arm. Yesterday she was in agony as the nerves in her mouth felt like she was getting high-voltage shocks all day. When that went away, we noticed that she has lost almost all use of the one good hand and arm. Since she is now secondary-progressive instead of relapsing-remitting, the loss could very well be permanent. Distressing to say the very least.
Does that answer your question?
