Quote:
Originally Posted by janmcn
All hospitals have social workers that deal with situations like this on a daily basis. Perhaps it's time to get a third party involved who can ask the proper questions to the patient and the caregiver. Perhaps they can offer solutions you have not thought of.
Also, a caring compassionate physician should be brought into the discussion. He or she knows more about what lies ahead physically and emotionally.
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We are back from the three day test at the hospital in Orlando. Indeed I did take advantage of all the case manager/social work help that was available at the hospital. It was pretty clear to everyone that I was exhausted and really did not know what to do. This 3 year decline has also been devastating for my husband too. He went from a vibrant man to someone completely dependent, weak and sick.
The results show that NPH (normal pressure hydrocephalus - a treatable disease - yes treatable - all this time) is very likely the diagnosis. He will have a shunt implanted in the brain to drain the excess spinal cord fluid into the abdomen some time within the next couple of months. He has the potential to return to more of the person that he was. I am so heartened and encouraged yet in a state of shock at the length of time that it took to come to this. (3 years - tests, tests, more tests, hospitalizations, doctors, trip after trip to Mayo - no answers) Plus the toll it has taken on us both - he, sick, weak, dependent - me, Caregiver Stress Syndrome written all over my face.
In the interim, he has agreed to go to a rehab hosp to gain some strength and give me a rest.
I guess we can put off moving decisions for a while and give this a chance to turn our lives around. Time will tell.
My heartfelt thanks to all of you. I cannot believe how long this thread has gone on. The kindness and concern of strangers (yes - I know - some of you know exactly who I am and that's ok) is incredible. That first sleepless night when I sat here and started off with an idle generic type question was just amazing to me. As the night went on and more and more responses came, it became so clear that there were a tremendous number of really caring people out there. So much wisdom in the responses, plus I received several personal messages that were so comforting to me.
I will continue to follow up on this thread as it is pretty clear to me that so many of you really care. Thank you, thank you all - from the bottom of my heart.