I am at my wits end with caring for Andy, he can still walk a little but needs help with showers and cleaning himself in the bathroom.
I have a bad back and find helping him harder and harder.
I have also found out there is no one I can call for help they all have to know before hand, like I will know when he will need help.
how do others deal with this?
Lillian, I can understand and empathize with you. I have KD and my wife has had some interesting and not often fun experiences ... especially when I have fallen and broken a fibula or tibia. I added a topic recently about a shower stool that I use. Prior to the stool, my wife had to be by me the entire time (stepping in, showering, drying, stepping out). She now doesn't have near the concern. I also made a decision after breaking three bones in four months to use a wheelchair most of the time. I only stand to transfer, cook, exercise, and do a few minor things where I am not having to walk without some support. This has made a tremendous difference in my wife's life. She has far less concerns for my safety and her stress level has dropped significantly. It might be time to have a heart-to-heart discussion on the subject of safety, concerns, and your health including the stress. Have your husband try a show stool ... it does make a difference for both husband and wife. Have him consider reducing the amount of walking activities where little or no support is available. There are plenty of opportunities for your husband to continue to maintain a certain quality a life without taxing his and your mental, emotional, and physical health. I hope this helps. Regards, Bruce
Location: San Luis Obispo CA
You might consider seeking out a local support group for ideas. The MDA includes SBMA it its scope and they offer many good services and help with buying equipment like power chairs. Most likely you will also find local care giver support groups that can help you deal with the challenges you are facing.
email:rheitzman at gmail
I'm worried about this same subject. We do not know which one of us will need to help the other first on a long term basis. Since we are both disabled, it will be difficult either way. We get "Ability" magazine which has a lot of good articles as well as plenty of ads on where to get equipment that I had never even thought of.
Does medicare pay for home aids? We don't need em yet, but will someday in the not so distant future.
God is the greatest physician of all.
Lois, yes, there is some available aid through Medicare. The service has to be short-term in nature and prescribed by your doctor. There are some longer term benefits also, but they are not quite as robust.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614