Husband with Alzheimer’s, looking for hope

[carry]

Thank you all for your kind replies. I'm sorry I haven't responded to everyone individually... I'm very slow when it comes to technology!
It's awful to hear all your experiences of how you have too, felt let down when your loved one has been ill.
I hope you're all coping ok in this lockdown.. my family are finding it pretty hard this time round. Grateful that spring is slowly on its way and will hopefully bring a bit of joy with it. My husband is making slow progress of being able to sit in a chair again, it's very slow and struggling with the bathing and washing and daily incontinence. Trying find ways to reconnect and find time for some precious memories too, but I run around like a headless chicken most days. Need to get painting with numbers as suggested by @Blossom50 - hope yours is going well. I think I might try cross stitch.. currently dont have a table to finish my jigsaws.

Sending love to you all x

A BIG TRAY WOULD BE GOOD FOR YOUR JIGSAWS IF YOU HAVE ONE

 

[None the Wiser]

This thread has made me feel so sad and angry the way your loved ones have been treated in hospital. Goodness knows what I’ll do if my husband has to go in for some reason. It doesn’t bear thinking about how frightened, confused and vulnerable someone with dementia is when in an unfamiliar situation, with no one there who understands them or takes time to ’care’. It’s unforgivable that the system is such that nursing/ support staff don’t have time to feed patients, and look after them properly. My husband reacts negatively to all sorts of things at home e.g. loud or sudden noise and movement. It would be a total nightmare for him.

In addition, hearing how people are trying to manage at home with very little help. The support seems to always kick in too late. No wonder we feel overwhelmed by it all. I have huge respect for those of you in your 80’s that are coping with incontinence etc. I’m in my 60’s and am exhausted with the physical effort of changing, washing, dressing, etc. especially after broken nights. Goodness knows how I’d cope if I were 15 yrs older.

I find I can’t concentrate for long on anything so jigsaws, magazines, etc. are good. I haven’t tried painting by numbers so may give that a go.
Take care everyone.

 

[vannesser]

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

My husband as vascale told in 2016 for past 2 year he been in hospital 3 times
1time 2 years a go with chest infection / was there 2 weeks came out needing simmer frame to walk and and wheelchair .was walking with walking stick till then.went in last June sent in with septis that went in 2days they was going to discharge him i asked if he been out of bed as day he when in it took 3 of us to hold him up they then checked had to come home with hospital bed 2 cares 4 times a day . bed bound can not sit up or turn on sides.hosted to chair .he just came out of hospital this week after problems do to coven 19 .had to tell them he can not move came back out with sores on bottom and saw round privets got thrush and bad cough
He was sleeping a lot before he went in so cares think he was just left not turned or changed a-lot they just left him sleeping .