Hello, I’m new on here.
I am caring for my husband with alzheimers, he was diagnosed in 2017 and I was in denial for a long time. He has deteriorated so rapidly this year from recurring uti‘s and hospital stays. He was on risperidone when he was first diagnosed as is personality had completely changed... he was discharged from the memory clinic once he was on the full dose of memantine and the risperidone was never monitored- he was on it for two years until I demanded it be reviewed. We felt so let down and like my husband had just become invisible. I think this has led to muscle stiffness in his legs and parkinsonism.. although I feel like everything is just guess work right now.
I know we’re not alone in feeling abandoned with not much help available - I feel like an Alzheimer’s diagnosis is viewed as a lost cause.
Long story short but he was in hospital with a kidney infection and sepsis for 3 weeks in December, with no contact because of COVID. Hospital is not the place for people with dementia, of course he needed medical treatment but we were told for over a week that he could be discharged but nothing was happening - we had to fight to get him home. When he did come home he looked so beyond lost, not been showered, shaven, teeth not brushed, vacant look and not talking and has lost so much weight and muscle. They said he didn’t always want his food, but he needed someone to help him eat - there was zero care for his dementia on the ward.
I could go on and on, I know we all feel anger when it comes to this diagnosis. He’s home now and we’ve managed to get some sparkle back in his eyes, but he is so withdrawn. we have carers 4x a day, he is currently bed bound and are having to use a hoist to very slowly get him back into a chair. It’s the cruelest disease.
I feel so much guilt, I worry he doesnt want to get better and back on his feet as he resists help and closes his eyes.,, I know it’s the illness, but how can I bring him joy again?
Sending love to all going through this, it’s so lonely and I often feel so trapped especially with everything else happening in the world. X
I am caring for my husband with alzheimers, he was diagnosed in 2017 and I was in denial for a long time. He has deteriorated so rapidly this year from recurring uti‘s and hospital stays. He was on risperidone when he was first diagnosed as is personality had completely changed... he was discharged from the memory clinic once he was on the full dose of memantine and the risperidone was never monitored- he was on it for two years until I demanded it be reviewed. We felt so let down and like my husband had just become invisible. I think this has led to muscle stiffness in his legs and parkinsonism.. although I feel like everything is just guess work right now.
I know we’re not alone in feeling abandoned with not much help available - I feel like an Alzheimer’s diagnosis is viewed as a lost cause.
Long story short but he was in hospital with a kidney infection and sepsis for 3 weeks in December, with no contact because of COVID. Hospital is not the place for people with dementia, of course he needed medical treatment but we were told for over a week that he could be discharged but nothing was happening - we had to fight to get him home. When he did come home he looked so beyond lost, not been showered, shaven, teeth not brushed, vacant look and not talking and has lost so much weight and muscle. They said he didn’t always want his food, but he needed someone to help him eat - there was zero care for his dementia on the ward.
I could go on and on, I know we all feel anger when it comes to this diagnosis. He’s home now and we’ve managed to get some sparkle back in his eyes, but he is so withdrawn. we have carers 4x a day, he is currently bed bound and are having to use a hoist to very slowly get him back into a chair. It’s the cruelest disease.
I feel so much guilt, I worry he doesnt want to get better and back on his feet as he resists help and closes his eyes.,, I know it’s the illness, but how can I bring him joy again?
Sending love to all going through this, it’s so lonely and I often feel so trapped especially with everything else happening in the world. X