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Husband with Alzheimer’s, looking for hope

Poppy08

New member
Oct 9, 2020
4
0
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 He’s home now and we’ve managed to get some sparkle back in his eyes, but he is so withdrawn.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
 

Blossom50

Registered User
Aug 22, 2016
24
0
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
Dear Poppy, hello
I really feel for you, my dad has alzheimers, diagnosed around 10 years ago. Until last April my mum cared for him at their home. She passed away in April, I found her collapsed on the floor, after 10 days in hospital. She died of covid, but I'm pretty sure it was predominantly exhaustion and sheer loneliness making a difficult situation worse.
The reason that I am telling you my sad story is that I totally understand how awful your situation is. Mum never expected to be my dad's carer, they were life partners, and built their ife together. Dementia changes everything in relationships in so many ways that most people who have never experienced it could ever begin to understand.
You asked how you can bring him joy again, maybe joy is too much to hope for. Hold his hand, put your warm hands gently on his forehead, talk to him about things you did together, be his memory. He is still the man you love, but he is lost in the fog, he will appreciate you being there for him.
Make time to look after yourself too. One thing I found helpful to pass the time and empty my mind was painting by numbers, I'm not particularly good at it but found it quite soothing to get absorbed in.
Keep looking and reading on this site. You are not alone
X
 

Vitesse

Registered User
Oct 26, 2016
243
0
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 so sorry to hear how desperate you feel and understand totally, as I have been through the same difficulties. My husband isn't bed bound, but he has no idea of where he is, who I am etc. He was diagnosed in 2017, but the symptoms had been there for a couple of years before that. The last three years have been very difficult, and I felt so alone. Please don’t let the medics and the SS ignore you. Unfortunately, they would be happy not to hear from you, and let you get on with it. In this world we seem to have to make nuisances of ourselves to be noticed, and then things may happen. In reality, there isnt too much they can do for the PWD, except tweak the medication, but they can do things to help the carer. I have cried on The phone to my GP, the Mental Health specialist and any one else who may catch me on a bad day. They will take note and there are systems out there to help. Don’t try to be brave and hide your anxiety. i would start with your GP and ask him/her what services are available. My husband was referred to the mental health team, and after a shaky start, that set the ball rolling.
 

Poppy08

New member
Oct 9, 2020
4
0
Dear Poppy, hello
I really feel for you, my dad has alzheimers, diagnosed around 10 years ago. Until last April my mum cared for him at their home. She passed away in April, I found her collapsed on the floor, after 10 days in hospital. She died of covid, but I'm pretty sure it was predominantly exhaustion and sheer loneliness making a difficult situation worse.
The reason that I am telling you my sad story is that I totally understand how awful your situation is. Mum never expected to be my dad's carer, they were life partners, and built their ife together. Dementia changes everything in relationships in so many ways that most people who have never experienced it could ever begin to understand.
You asked how you can bring him joy again, maybe joy is too much to hope for. Hold his hand, put your warm hands gently on his forehead, talk to him about things you did together, be his memory. He is still the man you love, but he is lost in the fog, he will appreciate you being there for him.
Make time to look after yourself too. One thing I found helpful to pass the time and empty my mind was painting by numbers, I'm not particularly good at it but found it quite soothing to get absorbed in.
Keep looking and reading on this site. You are not alone
X
Thank you so much @Blossom50 for such a kind response. I am so sorry to hear of your loss, I can’t imagine how hard that must be for you. so devastating, after everything you’ve lost with your dad. To lose your mum like that, just can’t even begin to find the words.
I think me and my family find it hard to talk to others about, as youre right... no one truly can understand until you have experienced it yourself, and id never wish this experience on anyone.
your words brought tears to my eyes, we have gentle moments and moments where we feel like we have him back just for a second. we all try to cherish those and try to remember the happy times.
my daughters worry about me not making time for myself, but it’s hard at the moment for everyone to escape with this awful pandemic. I have started on a jigsaw, will have to hunt for some painting by numbers.
take care of yourself, thank you so much again for your response, it means so much x
 

Poppy08

New member
Oct 9, 2020
4
0
I am so sorry to hear how desperate you feel and understand totally, as I have been through the same difficulties. My husband isn't bed bound, but he has no idea of where he is, who I am etc. He was diagnosed in 2017, but the symptoms had been there for a couple of years before that. The last three years have been very difficult, and I felt so alone. Please don’t let the medics and the SS ignore you. Unfortunately, they would be happy not to hear from you, and let you get on with it. In this world we seem to have to make nuisances of ourselves to be noticed, and then things may happen. In reality, there isnt too much they can do for the PWD, except tweak the medication, but they can do things to help the carer. I have cried on The phone to my GP, the Mental Health specialist and any one else who may catch me on a bad day. They will take note and there are systems out there to help. Don’t try to be brave and hide your anxiety. i would start with your GP and ask him/her what services are available. My husband was referred to the mental health team, and after a shaky start, that set the ball rolling.
Thank you @Vitesse for your kind response. I’m so sorry for what you’re going through too. I often feel alone in this, but I know im not, I wish no one had to go through this. Sounds like our situations are very similar, with timelines.
we have continued to shout and be heard, its definitely much better than it was and i have help from carers now and a social worker that’s really helped me over the past few months.. I just wish we had found this help sooner as sometimes it feels too late, especially now hes bed bound and chance of physio and rehabilitation seems futile.
thinking of you and what you’re going through, these messages really helped to comfort me.. which is priceless .
take care x
 

RosettaT

Registered User
Sep 9, 2018
548
0
Mid Lincs
@Poppy08, my heart goes out to you, we were in a similar position 2 yrs ago, my OH was also diagnosed in 2017.

He collapsed because of an infection (turns out it was sepsis based) he was in hospital for12 weeks including a 6 week stay for rehab, which I really had to fight for because they took one look at his diagnosis and made a decision without accessing him as an individual. In the general hospital there was no appropriate ward for him (in those 12 weeks he was in 7 different wards) so he was pushed from pillar to post. I visited at meal times to help feed him but was off for a week with a cold. When I went back in they had drawn up a chart to monitor his food and drink intake, because they said he wasn't eating or drinking, which they then failed to fill out. He was in a dirty PJ top, hadn't been shaved for a week, had oral thrush so bad his lips were white and had an eye infection. I went ballistic....

He too was on risperidone which I have to say saved my sanity at the beginning but I questioned it's use 4 times with the hospitals and doctors as he had been on it for 6mths, but they just dismissed my concerns, the NICE guidelines say it shouldn't be given for more than 6-8 weeks to people with dementia.

Anyway when I eventually got him home with the help of a private physio and OT he blossomed. (Private because the Community Physio dept weren't interested in him, they actually said to me they could get 8 people off their books by the time my OH would show any improvement) He was by now very stiff in his joints and would be very rigid.

The OT requested a referral with Care of the Elderly consultant because she thought he may have Parkinson's. The consultant took one look at his meds and immediately said 'He's coming off that' and I was to reduce the dosage down to .25mg over 4 weeks and then stop it altogether. The change in him was immediate, tho' she did say it could take months. He now does much more for himself than he was doing, is much less stiff and isn't quite so slow in what he does do. He has suffered no withdrawal effects and doesn't need any alternative meds. He walks with my help from his bed to his chair in the lounge twice a day, thereby dispensing with his hoist.

All I can say to you is follow your instincts, if you feel his meds need reviewing push for it. Does your your local hospital have a Care of the Elderly department he can be referred to ? I know now is not a good time for consultations, my OH's took 6mths because of last March's lockdown but sometimes they will do a consultation by phone.
 
Last edited:

Duggies-girl

Registered User
Sep 6, 2017
2,336
0
Hi @Poppy08 So sorry that your husband has deteriorated in hospital but not surprised. My dad had 3 weeks in hospital early in 2019. They didn't look after him and whatever I said was basically ignored. We had to get him out in the end and I moved in with him. He was admitted with pneumonia and unable to stand. He went on to have a heart attack and a stroke while in hospital and three falls, one of which was quite serious. The hospital put dad in incontinence pants, he was not incontinent, they just could not be bothered to help him to the toilet and that was the problem because he would try to take himself. They gave him totally unsuitable food when he should have been on soft food only because he had oesophageal cancer and had stents in his oesophagus. If I hadn't been able to visit twice a day then I know dad wouldn't have lasted more than a week.

It was the worst experience of my life and his. We were called in to say goodbye one night but he made it through the night then I had to get a commode for dad and put him on it in the morning because there was nobody available to help me.. I could go on and on but we did get him home and he made a remarkable improvement. He came home in a wheelchair and we could just get him to the bathroom with two of us supporting him. I set about getting dad standing up and sitting down again with help from us and his frame. It was hard work and it took a while but he was eventually pretty mobile with his frame and he had a good quality of life at home for another year before he died of the cancer.

We had no help at all and it was baby steps all the way. I remember we got a call from occupational therapy some months after dad came home and I told them they were too late because I had already got dad walking.

You are right hospital is no place for someone with dementia. I am still angry at the way dad was treated and I am sorry that you have experienced similar.
 

maryjoan

Registered User
Mar 25, 2017
1,574
0
South of the Border
Brings to mind my foster son, who had cerebral palsy, but was an intelligent and happy lad. James had frequent bouts of pneumonia and he was in hospital on one occasion and I simply had to go home just for one night because of my other children. When I got back to following morning, another child on the ward called me over and told me that James hadn't had any breakfast. So I asked the nurse and was told that they had put his breakfast in front of him, but he did not eat it. How must that have felt to poor James. He loved his food, but he needed someone to feed it to him because of his disability.
I was disgusted at the nurses response, but when I complained I was told that they 'were there to make sick people well, not care for the disabled.'
James died when he was 13 and that is a long time ago now, you would think attitudes would have changed, but, obviously , in some hospitals they have not.
Either that, or our wonderful ( and it is) NHS just isn't geared up to care for disabled, or people with dementia, because there simply is not the funding..........
 

RosettaT

Registered User
Sep 9, 2018
548
0
Mid Lincs
Yep, I came to the conclusion that the hospitals were very good at diagnosing, prescribing and dispensing medication but any actually nursing required just wasn't on their radar.
 

Blossom50

Registered User
Aug 22, 2016
24
0
Thank you so much @Blossom50 for such a kind response. I am so sorry to hear of your loss, I can’t imagine how hard that must be for you. so devastating, after everything you’ve lost with your dad. To lose your mum like that, just can’t even begin to find the words.
I think me and my family find it hard to talk to others about, as youre right... no one truly can understand until you have experienced it yourself, and id never wish this experience on anyone.
your words brought tears to my eyes, we have gentle moments and moments where we feel like we have him back just for a second. we all try to cherish those and try to remember the happy times.
my daughters worry about me not making time for myself, but it’s hard at the moment for everyone to escape with this awful pandemic. I have started on a jigsaw, will have to hunt for some painting by numbers.
take care of yourself, thank you so much again for your response, it means so much x
He
Thank you so much @Blossom50 for such a kind response. I am so sorry to hear of your loss, I can’t imagine how hard that must be for you. so devastating, after everything you’ve lost with your dad. To lose your mum like that, just can’t even begin to find the words.
I think me and my family find it hard to talk to others about, as youre right... no one truly can understand until you have experienced it yourself, and id never wish this experience on anyone.
your words brought tears to my eyes, we have gentle moments and moments where we feel like we have him back just for a second. we all try to cherish those and try to remember the happy times.
my daughters worry about me not making time for myself, but it’s hard at the moment for everyone to escape with this awful pandemic. I have started on a jigsaw, will have to hunt for some painting by numbers.
take care of yourself, thank you so much again for your response, it means so much x
Hello Poppy,, I'm just wondering how you are today. It's lovely to hear you have daughters, I'm sure they will be keeping an eye out for you. My Mum was fiercely independant and so reluctant to ask for help, but I did persuade her to contact the Admiral nurses. They were really great, so experienced in all aspects of dementia, they really helped me make sure social services were informed when mum went into hospital and I was trying to work out how to get the right care in place for my dad. One particular thing I also really appreciated was that, when I didn't feel like talking to them, they gave me time and space to get back to them when I felt ready. These winter months can tend to make us sad and gloomy and, of course lock down makes it all that much harder. I hope you found a good jigsaw to do. My daughter found me a paint by numbers on amazon, when I opened it up, it looked so complicated and I thought I could never ever finish it, but little by little I worked it out, and got there in the end. It's a bit like life really, when it is all complicated and overwhelming you have to work out what you can do with what you've been given, and just do the best you can. It will never be perfect but it will always be yours and always be unique. X
Thank you so much @Blossom50 for such a kind response. I am so sorry to hear of your loss, I can’t imagine how hard that must be for you. so devastating, after everything you’ve lost with your dad. To lose your mum like that, just can’t even begin to find the words.
I think me and my family find it hard to talk to others about, as youre right... no one truly can understand until you have experienced it yourself, and id never wish this experience on anyone.
your words brought tears to my eyes, we have gentle moments and moments where we feel like we have him back just for a second. we all try to cherish those and try to remember the happy times.
my daughters worry about me not making time for myself, but it’s hard at the moment for everyone to escape with this awful pandemic. I have started on a jigsaw, will have to hunt for some painting by numbers.
take care of yourself, thank you so much again for your response, it means so much x
 

Susanjean

New member
Jan 12, 2021
1
0
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
Hey Poppy08. I just joined a few minutes ago myself and yours was one of the first things I read and it hit home. My significant other has been diagnosed with dementia. I am still in denial and wanting to stay there. This brilliant man of mine - gut wrenching. And yet at this time he remains aware of our relationship and still tries to maintain it as best he can. With Covid, we are so isolated and that is not good. At the same time, going outside of the home environment makes it harder on him and on me. Lately, he has had problems biting his lip when eating and the dentist says this is a typical sign of late stage dementia. I definitely didn't want to hear that! I guess I am still waiting for a miracle.

Regards,
Susanjean
 

Poppy08

New member
Oct 9, 2020
4
0
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
 

carry

New member
Jan 28, 2021
2
0
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
Hello, I have tears in my eyes reading your post, it is so like my own husband, he is ot here anymore,and when I cry with despair for him he does not even notice,I give him no medication for his Alzheimers as he had a fall a few ears ago and i read it can make him sleepy, I do not want him to look like the inhabitants of thenursing home that appear to be sleeping all day.He is now refusing me to change his incontinence pants so I have to be insistant and manually pull them off and i hate doing that, I am 84 and it is too much for me, I have been told to get help but they could not do what I have to do, I even have to wash his bottom when he soiles himself as he will not sit on the toilet now either. I cry even as I write this as I remember when we wete married over 63 years ago and we promised to care for each other for better or for worse and he was the best father anyone could have, he gave his own life for all of us and I have to do it for him, last night he got out of bed after saying he wanted to go and for over7 hours he walked around the room in his bare feet, sometimes in my slippers, putting on a coat and talking to himself, I could not take it any more and left my bed and went to another one, I had to get up and check that he was alright and there he was on the side of the bed I had no proctective sheet on, I tried to move it to the side he was on but he was a dead weight and i could not do it, I went back to my new bed and did not get to sleep until 4.30 in the morning and he slept until 11.30, then the fight to get his pants off again started all over again and I am still crying at 1.00pm, I feel for you too
 

Evie5831

Registered User
Nov 7, 2015
150
0
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
 

jennifer1967

Registered User
Mar 15, 2020
2,262
0
Southampton
could you get an assessment of his needs done. you need to take care of yourself as well. my husband has vascular dementia and no way near your husbands stage. both posts made me for sad. i have lost quite a bit of him already especially empathy and cuddles only a husband can give with the shared history we share. i hope im as strong as you ladies are when i get to that point.
carry you could really do with some help, you are going to make yourself ill
 

Evie5831

Registered User
Nov 7, 2015
150
0
So sorry to hear how poorly your OH has been , hospital is the pits atm with COVID. At least now he is home he can gain comfort from being back with his love ones.. my thoughts are with you and him
 

Evie5831

Registered User
Nov 7, 2015
150
0
Hello, I have tears in my eyes reading your post, it is so like my own husband, he is ot here anymore,and when I cry with despair for him he does not even notice,I give him no medication for his Alzheimers as he had a fall a few ears ago and i read it can make him sleepy, I do not want him to look like the inhabitants of thenursing home that appear to be sleeping all day.He is now refusing me to change his incontinence pants so I have to be insistant and manually pull them off and i hate doing that, I am 84 and it is too much for me, I have been told to get help but they could not do what I have to do, I even have to wash his bottom when he soiles himself as he will not sit on the toilet now either. I cry even as I write this as I remember when we wete married over 63 years ago and we promised to care for each other for better or for worse and he was the best father anyone could have, he gave his own life for all of us and I have to do it for him, last night he got out of bed after saying he wanted to go and for over7 hours he walked around the room in his bare feet, sometimes in my slippers, putting on a coat and talking to himself, I could not take it any more and left my bed and went to another one, I had to get up and check that he was alright and there he was on the side of the bed I had no proctective sheet on, I tried to move it to the side he was on but he was a dead weight and i could not do it, I went back to my new bed and did not get to sleep until 4.30 in the morning and he slept until 11.30, then the fight to get his pants off again started all over again and I am still crying at 1.00pm, I feel for you too
 

Evie5831

Registered User
Nov 7, 2015
150
0
Hello,
I am so sorry to hear the distressing time you and your husband are having. Have you enquired about respite care to give you a chance to recharge before he comes home again? Do you have daily carers to come in who could shower your husband and save you some of the very heavy work.
Would you ever consider a care home , I know it’s a hard decision to make but once I made that decision for my dad I found he was happy to be in there and I went back to being his daughter rather than his full time carer
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,217
0
High Peak
Hello, I have tears in my eyes reading your post, it is so like my own husband, he is ot here anymore,and when I cry with despair for him he does not even notice,I give him no medication for his Alzheimers as he had a fall a few ears ago and i read it can make him sleepy, I do not want him to look like the inhabitants of thenursing home that appear to be sleeping all day.He is now refusing me to change his incontinence pants so I have to be insistant and manually pull them off and i hate doing that, I am 84 and it is too much for me, I have been told to get help but they could not do what I have to do, I even have to wash his bottom when he soiles himself as he will not sit on the toilet now either. I cry even as I write this as I remember when we wete married over 63 years ago and we promised to care for each other for better or for worse and he was the best father anyone could have, he gave his own life for all of us and I have to do it for him, last night he got out of bed after saying he wanted to go and for over7 hours he walked around the room in his bare feet, sometimes in my slippers, putting on a coat and talking to himself, I could not take it any more and left my bed and went to another one, I had to get up and check that he was alright and there he was on the side of the bed I had no proctective sheet on, I tried to move it to the side he was on but he was a dead weight and i could not do it, I went back to my new bed and did not get to sleep until 4.30 in the morning and he slept until 11.30, then the fight to get his pants off again started all over again and I am still crying at 1.00pm, I feel for you too
This is far too much for you to cope with and you sound close to breakdown. Contrary to what you think, carers will do exactly what you do - including getting him up, bathing him, washing his bottom, changing sheets, cleaning the carpet, etc. Please get an assessment of needs for your husband. And a carer's asessment for yourself - you can't go on like this.

I'd suggest a care home where there are staff around day and night to help him but I'm guessing you are reluctant to do that. But it doesn't mean that you have failed or that you no longer care. You could be his wife again while others do the heavy work. You sound absolutely exhausted.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,803
0
Yorkshire
hello @carry
a warm welcome to DTP

you sound so worn down and worn out .... I'm glad you've joined us so are able to share with folk who understand

please contact your Local Authority Adult Services to arrange an assessment of your husband's care needs and a carer's assessment for yourself ... details will be on its website
home carers will take on all the tasks you undertake, including washing your husband
and they may have some useful tips for you, such as using kylie sheets on the bed
what they can't do is stay overnight, unless your husband's finances can afford a nighttime carer ... so please also begin to consider residential care as you must look after yourself too ... I appreciate that's not an easy decision to make, especially with Covid restrictions in place