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    • CommentAuthorJan K
    • CommentTimeJan 20th 2018
     
    Recently the social worker from the local council on aging came for DH's yearly review. I always dread when she comes, even though she is very nice and the whole thing is fairly easy. After she left, I just wanted to cry and cry--or walk out on the front porch and scream. I kept trying to put into words why these reviews made me feel so bad. The best thing I could come up with was that since I had to go detail by detail through all of DH's worsening symptoms with her, it was like having my nose rubbed in our situation. I knew I needed better words than that.

    Then that same night I saw a PBS show about another dreadful disease, and the husband of the lady who was ill said that he didn't think too much about their situation most of the time. It was just how they lived their lives. But then when they were around other people, and he saw the situation through their eyes, then he had to ....recalibrate. At that point his face crumpled and he began to cry. And I knew where my need for tears had come from.

    The husband also said "What's impossible to capture is just how hard this is, day in and day out. I feel like our lives are just frozen in this kind of sickness amber."

    At another point in the show, the wife, who was the patient, was watching a beautiful video of a sunset, and she said it was so wonderful, and ....almost like being there. And then she began to cry, from what I thought might be realizing that most of the sunsets she would be seeing would have to be on video. And I feel like that, too, because we are almost housebound here. Sometimes we nearly miss a whole change of seasons because we haven't been out of the house in so long.

    The wife also said that living with that disease is like dying and having to stay here and watch life go on without you. I think caregivers can also identify with that feeling.

    On a slightly different note, there was a lot in the show about how when doctors don't know what something is or how to treat it, they often classify it as a psychological issue. They said right up until the first CT machine was used, they classified multiple sclerosis as "hysterical paralysis". It helped me to see that dementia is not the only disease where doctors are not much help. It's still sad, though. There are all these people who need help from doctors, and sometimes doctors not only don't know what's wrong, they do very little to find out.
  1.  
    Great post, Jan. Really says it all.
    • CommentAuthorCO2*
    • CommentTimeJan 21st 2018
     
    Jan, your post is really very well written. Where you said I feel like our lives are just frozen in this kind of sickness amber is something I experienced as well. In May it will be 3 years out and as I look back , which I try not to do very often, it seems like a bad dream and that I still find it hard to realize I survived. There were many many days that I wondered how I could get through another one. I still have twinges of guilt for having placed him but my sanity was at stake and one has to do what you have to do to survive. For me watching his daily decline was beyond words painful. And then when people would say but he looks so good, it would depress me and give me this hopeless sense I think because a person who has not gone through this just does not understand and at the time I just wanted one person to understand what I was going through. This website was the only place that I found understanding. You will get through this, Jan. We love you and r here for you.
    • CommentAuthorbhv*
    • CommentTimeJan 21st 2018
     
    Your post.struck a.chord with me too. Sometimes my neighborhood ladies get together for pot luck lunch. It is very weird when some of the gals ask if my husband is any better. I laugh.and say, no hon, you don't get better with this disease.... only worse and then even worse. Generally they are speechless then. But they ask the same thing next time. I am lucky though because two of the gals really get it, even though their husband's problems are easier to deal with. They are big helps when they go out to lunch with me and check up on me to cheer me up and are available for me to call in emergencies. Haven't had to do that yet, but I think they will actually follow through.

    I keep trying to figure out how and if I can survive all that is coming. My hb is 74. In perfect physical health. Takes no medications. Still.strong. So it seems to me this could go on for 10 or even 20 years more. Whenever I say this, health care providers shake their heads and say no, sweetie, it won't last that long. Well Jan just.said it has been 18 years. We are only 8 years in. When they say no it won't last that long, I say one can only hope.

    Why would a social worker do an annual review?
    • CommentAuthorRodstar43
    • CommentTimeJan 26th 2018 edited
     
    Reread all your posts. You sure capture a lot of what I feel. Our lives are just frozen day in and day out. I try so hard to control my emotions, but I Know that this expererience is wearing me down and taking a toll on my body and mind. My toll bridge is full. Yet, there is tomorrow and the day after that. Am I as strong as I think I am. I now know I am not.