Husband recently had 10 days in respite. He suffers from FTD with Parkinson like characteristics and anxiety. He is classified as Younger Onset Dementia because he is only 63. When he came home I realised just how bad he is getting. Stumbling, poor vision, couple falls (two serious) wanders and now cannot chew his food and has trouble swallowing. I called care facility to make an appointment to speak with director about future permanent placement. He asked me if anyone had talked to me about how FTD can sometimes turn out for sufferers. I said no and he began to explain how as the brain continues to shrink people can become very difficult to manage and even violent and should this happen they would have to move him into a specialist ward of which there are only two anywhere near us.
Having read posts on this site I know that if DH is already in permanent care it is the facilities responsibility to place him in new facility. I am now concerned that if I don’t already have DH “in the system “ and things go bad I will have next to no chance of finding a good placement for him because he is under 65 and he would most likely end up in some terrible public psychiatric ward.
I am tired of hearing family members say to me how awful and sad it is for DH to have worked so hard for the last 41 years and saved and planned hard for retirement and now he will never get to enjoy it. All true. However there was another person every step of the way whose retirement and savings has gone down the drain as well. Me. The last five years of my life has been hell, But nobody seems to see that. My BIL rang two days ago and said you are his wife you should be looking after him. No one else. Mil wants me to try harder to get better doctors and try new methods. Why haven’t I tried pot? Son says today why did Dad sound good a couple of days ago but terrible today? All of them live in other states and have not actually visited. MIL says she can’t even look at him as it will be too upsetting for her even though she knows how much it means to him to see her even if only by video link. Thankfully he has stopped asking about her. Not once has anyone asked how am I coping. Not one of them trust me and think I am scheming to be rid of him. Try harder. Do more. My brother came from England for a week to see DH and helped me with getting him into respite. Completely understands. Understands my feelings and worries how I will cope.
I wonder what the attitude would be like if it was the other way around?