Dear Frustrated and All:
Please do not feel guilty about your fears and worries. I too felt that way when John was ailing more and his dementia was becoming worriesome. Not to the point your husband has but when he fell and hurt his head this brought on more of the dementia and I too was worried about sharing when everyone else had larger problems.
I do believe I shared that John was so mixed up wanting to leave the condo, etc, at the point where he wanted to push me, etc and we had to call the ambulance and 3 police cars came as I had told the operator John had dementia and was becoming violent. First question from operator: Do you have any guns in the house": No, then 3 police men came, etc. etc.
I feel for your as this actively dying was what John went through even though the drs didnlt say. It is hard to see the changes, the desire to live and the need to pass, this is what we went through and thank goodness he never had to be placed in a care home as the doctors, hospital and I felt I could no longer care for him no matter how much I loved him and cared for him for nearly 2 years.
His higher power took over and as I stated he had a stroke and passed the next morning. I grieve, but I like you have been grieiving for over 2 years with his illness's. Now it is tears I am shedding for all the time we missed with his illness but I am thankful for a death where he went to sleep after his stroke and his last words to me and the family.
My heart goes out to you and all who are caring for their loved ones, the anxiety, uncertanity and questions go on and on and then when it happens it seems sureal.
I wish you well and pray that your husband will find peace soon and not have to go through all the illness he has and that you find rest soon knowing you did all you couldand as my doctor said to me when I was upset about John being so agitated and agressive, " You did all you could, you were a good wife, a good nurse and you cared for him for so long...now you cannot look after him at home and you are not safe" I cried as it was hard to know I was not safe.
Off he went to the hospital and passed before he could be placed in a care home. Somewhere there are angels and they hear our prayers and often they are answered.
I pray you will have a caring angel help you and help you get some rest and give your husband rest and peace.
Love and Hugs
Xenia
P.s. I will write about the rememberance we are having on Saturday. Our children have taken over and arranged this. It will be in our daugher's home. It will be small as most of John;s peers have passed and our family is not large but it will be a time of tears and laughter and rememberance of their father, grandfather to one grandson and to me, his wife.