Hello
First time I post on this forum
My husband has been in a care home for just over a year now
Before that , I was caring for him at home as his mobility was declining
He has vascular dementia and they think he’s also got Alzheimer’s
I am not 100% happy with the care home and keep wondering if I should bring him home
I would need carers coming in 3 or 4 times a day
The care home and social worker tell me I wouldn’t cope but I also know my husband is not very happy there
So I am asking fellow carers here with maybe this sort of experience what do you think ?
I don’t entirely trust the care home recommendation because , at the end of the day, it’s a business
I trust the social worker more but she doesn’t really know my husband
So maybe you can help me decide
This wrestling in my head is no good for me , I don’t sleep well and as a result, feel tired most of the time
Hope you can help me
Thank you
Warm welcome @Christounette
I’m so glad you decided to post on the forum, I read-hear your worries and this is why the forum is so good for all of us.
A big hug first - it sounds like you need one!
I helped my Mum care for my dad who had many many health issues, included heart failure, bladder cancer and after a hospitalisation in 2015 he was diagnosed with Vascular Dementia…in addition to rheumatoid arthritis and difficult stability we cared for him until his last breath in Jan 2020. His bladder cancer made him pee rosé, blood clots and his arthritis and lack of strength meant he had many falls around the house
For all those reasons may I offer that your husband is in the best place for BOTH of you.
Could you share a little about your own health, how you are doing and if you have any friends/family support?
There were 2 of us - both of is in good health and it was an acutely traumatic for us to care for Dad. We had glimmers of being wife and daughter, but I was mainly shower, clean-up person and safety-compliance officer…with no sleep stripping the bed, remaking the bed and listening out for every bump, thump and shout out in pain…
I understand why your husband is not happy and I understand even more why you’re worrying and not happy BUT believe me it’s traumatic trying to care for someone with lots of mobility issues and incontinence issues.
The WORST time is not during the day it is overnight and Friday to Monday morning when there are limited or NO support in the community if an emergency happens.
I empathise with the emotional turmoil you are feeling…however, I really need to highlight the physical and traumatic emotional time you could go through if your husband was at home. Running around trying to organise everything, NOT just tend to your husband’s care.
Sending some hugs because none of this is easy. xoxo
@Christounette I have to echo Victoria. It gets to a stage where the person needs 24/7 care to keep them safe and this is impossible to provide at home. Also please remember that the conditions you describe are progressive so in a few months you would be REALLY struggling to cope. I do understand your ambivalence. Do you have a local ‘Support for Carers’? If so may be worth phoning them for advice. If you remove him from the home, and then find even with Carers 4x a day, you cannot cope there may not be a vacancy in a local Care Home as so many are struggling. What sort of life will YOU have if you have to have Carers 4x a day? You will still be ‘on call’ for the other 20 or so hours especially at night. Are you strong enough physically to cope with his incontinence?
I care for my 85 medically non compliant husband. Yes I can get out for limited periods but am constantly ’ on edge’. Sleep is difficult due to his coughing fits as he wont take the inhalers properly. He has a brain scan next week and I personally am convinced he has frontotemporal dementia. Frankly I would much prefer him to be in a Care Home as I have been caring since Jan 2013.
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Welcome to the forum @Christounette. I hope you find it as helpful and supportive as I have.
I have had experience of both sides of the coin unfortunately and the best advice I can give you is to look after you! My dad had to go into care for his last two years as my mum couldn’t (and wouldn’t) cope with him and it became a safeguarding issue in the end because he wasn’t safe at home. It broke my heart but I knew it was the best thing for him. The care home we chose was wonderful and he had better care than I could give him. As important was the chance for me to go home and refresh every night and eventually I started sleeping again, so that I could be bright and breezy when I visited. When the end came we were all treated with dignity and compassion.
Conversely I am now caring for my mum who is physically frail but mentally ok and she refuses flatly to go into a home. As a result I am run ragged, exhausted and resentful. Despite having paid carers, I am on call 24/7 and I feel like my life has disappeared entirely. How I long to sit by her bed and read to her or chat through the daily papers while someone else does the caring and caters to each and every of her needs.
I send my love and support. It is so very hard and so very heartbreaking but you absolutely must think about yourself, because if you break then so will everything and everyone else. Take care 
What are the specific problems with the home?
I just think it’s a sad environment
The residents just sit in the lounge and stare at nothing
They do nothing , they just seem to be waiting to die
Not all staff are nice and that can cause difficulties
My husband is not happy and that in turn distresses me
The food isn’t great : they never get fresh vegetables or fruit
It’s very difficult to get any information about my husband : when you ask questions, you are made to feel a nuisance
Hello and thank you for your reply
I am 17 years younger than my husband
My main problem health wise is arthritis
And depression !
I feel very lonely and I don’t like living on my own
Yet I am not free to try and find someone else
My 2 adult children live locally and support me to an extent … but I feel I can’t ask too much and they don’t get how lonely I am
I don’t know if there is a carers group nearby
How do you find out ?
Thanks again
Maybe talk to CQC about your concerns relating to the food? Have you read their reviews of the home?
Is he self funding, funded by Social Services, or NHS Continuing Healthcare?
I spent years trying to make my housebound mum happy, but it never worked. Lots of people here have tried in vain with their relatives. Especially with dementia, I wonder if it is possible to feel happiness any more?
Are you OK? Have you been away somewhere new since your husband moved into the care home? How do you feel?
I feel very lonely
I don’t like living on my own and don’t know what to do about it
@Christounette BIG hugs
@selinakylie is younger than her husband too
Perhaps you could visit together with one of your children and get them to ask the staff some questions, so that you don’t feel it’s all on you. It’s terrible that you’re made to feel like a nuisance when you’re worried about your husband - what a lack of empathy and support!!
Others on the forum are more experienced about care homes, like @bowlingbun so I defer to their experience of best ways to get more info and to advocate for yourself and your husband.
It sounds like you’re exhausted in addition to depression - actually that’s all one thing and exhaustion compounds depression it’s hard to motivate ourselves when we feel like that.
As this wet, darker and colder weather can’t be helping perhaps you could join an online forum
Carers UK have meet ups E.g. Care for a Cuppa | Carers UK
Of course, there’s always someone here to text-chat with too
Here you can look for support near you: Support where you live | Carers UK
The Alzheimer Society can point you towards local meet-ups: Dementia Café – information and advice for people in a relaxed setting | Alzheimer's Society
May I also suggest a listening service like Admiral Nurses: What is an Admiral Nurse and how can they help? - Dementia UK
I’ve heard good things about them, and they understand dementia and how difficult everything is
I hope that information doesn’t overwhelm you, I wanted to give you a few options of how to connect with others ‘who know’, if you can’t easily get out in this weather.
I was widowed suddenly when I was 54. One of my husbands friends, widowed in his 30’s gave me a fairly stern lecture about making a new life, which I didn’t appreciate at the time. By chance I came across a book called Starting Again by Sarah Litvinoff. It changed my life. Easy to read, it’s not telling you what to do, but encouraging you to think about what you have done in the past, and what you would like to give up. Also looks at what you always wanted to do but never had the chance.
@Christounette I think you must be going through some sort of grieving process? You have ‘lost’ your husband? You could google ‘support for Carers’ and see if you have a local branch and if they have meetings. Mine have monthly meetings but I cannot easily get out for long so I have a telephone befriender. Might be worth a go as they have often been Carers themselves. Also what about voluntary work? In my area the local charity shops are always looking out for volunteers - you can ‘sort’ if you do not want a face to face roll. Animal charities often want dog walkers or kitten socialisers. There is a whole world out there. I realise you may not be ready yet for big steps but maybe baby steps? My husband is 23 years older than me, and I feel that I have mourned the ‘death’ of my husband as he is certainly no longer the man I married. Some of it is his fault due to the non compliance and years or heavy drinking, some due to him naturally being so much older. One day you will be able to look back at the happy memories but it will take you a long time. Counselling may be an option? To work through your feelings?
@Christounette…welcome to the forum. I have a little experience with regard on what you’re going through. My husband moved into a care home 6 months ago due to severe mobility issues. It got to the stage where he was having carers doubled up 4 times a day. It was really tough and I couldn’t cope especially as the carers last visit would be around 7pm at night. We were having to call them out in the night if he had “accidents”. Since he’s moved into the home if I’m honest I am so much happier. He’s unfortunately not but I know that neither of us could cope if he was home. He’s only 59 years old and I’m 55. I wouldn’t bring your husband home if I were you as there comes a time where you have to think of your own well-being and health. It will get easier for you both over time though I understand how tough it is for you right now.
@Christounette, watching someone you love go through any form of dementia is heartbreaking and I’m sorry you are dealing with this. There is a thing known as anticipatory grief, more information can be found here:
Would there be an option to move your husband to a different care home? Most areas have more than one in the vicinity and shopping around might be an idea, you could go and visit, look around, speak to staff and residents just to get a feel of a place.
If you are able to do more things just for you, where you can meet other people, that might help with the overwhelming depression you are feeling.
Please keep posting, there is always someone around to talk to here.
My dad had dementia and I cared for him at home until a few weeks before he died earlier this year. For the last few weeks he was in hospital and then we made the decision on a care home rather than coming home. Sadly he was only in there for a month but I can say it was a big relief for me. He had very poor mobility, catheterised and was incontinent towards the end. Carers did come in but the responsibility the rest of the time was huge and the night times were horrendous (he didn’t sleep and spent a lot of the night shouting, so loudly the next door neighbours called the police at 2am once). We asked social services for help and reassessing needs etc etc but nothing happened in time. Dad never ever wanted to be in a care home but in the end it was the right place for him and although there were things a didn’t like about the place, I did at least feel he was safe. I think in your position I might look at options for a different home maybe but I don’t think I would consider bring him home. Take care of yourself too.
I will certainly read the book
Thank you for that bowlingbun
But the difference with you and me is that you were widowed , and I am sorry for that , which meant that you were free to ‘start again’
However, in my situation, it is difficult to see what I can do as my husband is still alive although he’s not the husband I had
That’s the main problem for me really
@Christounette I do not think your feelings are unusual. Would you consider checking out the Dementia UK Forum? There are people on this Forum who will be going through similar emotions and could maybe offer support? Also there is a helpline and again worth a try to talk your feelings through. Dementia is a long term bevreament isn’t it as the person we once loved is present in body but the spirit is slowly going.
Thank you selinakylie
I have also joined the dementia support forum and it’s very good
But most people on there care for a loved one with dementia but that loved one , in most cases , is still at home
So I am finding it hard to find people exactly in the same situation as me , with a husband who has got dementia and is in a care home
@Christounette I think you will find that some of the posters are in the process of looking for or having had their partner admitted to a Care Home. Dementia is progressive. But I am glad that you have found that Forum. Maybe do your own post? I think there is an ‘Introduce yourself’ section? I am sure you would get support as I know others must be in similar positions.
Think back to when your husband was well. I’m sure he would not want you to waste your life because he is ill? I still have a brain damaged son to care for, who lives nearby, for health reasons I can’t care for him full time, and my eldest son and grandson live with me. I know I NEED time away to look after my fragile health. The book will help you look towards a different future that you didn’t want. Just try it, there are various ideas which helped me.