Anyone else struggling with putting the family member you care for into a nursing home ?? Even though I have found the most wonderful place I’m struggling with putting my husband in there but I need to have surgery and won’t be able to look after him for six weeks so it looks like I have to put him in permanent
Maybe it’s just time I don’t know but it doesn’t feel right now it’s crunch time
He is very high care now and I have looked after him for 5 years never ever thought it would come to this in a million years
Look after yourself people I’ll let you know how it goes xx
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Dance1955
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I’m in the same boat my mum is constantly in and out of hospital. She is currently in again and the hospital have said it is time that she goes into a care facility as her care needs keep changing especially at night. I know she doesnt want to go into a care home but at the back of my mind she does need the security of someone being there 24/7. She can no longer walk or stand and her behaviour is odd at times due to the PSP. So i understand the guilt and struggle you are facing.
You poor thing the guilt is overwhelming isn’t it what are you going to do my love are you going to consider a nursing home? I think if I’m honest I would rather he had passed away at home but I don’t know how long that will be and don’t feel that I can keep going on I’ve looked after him for 5 years plus it’s so exhausting isn’t it and in the too hard basket even for some professional people !!
Ive bn a carer for my mum for many years, im an only child so the burden falls on me alone, its been a difficult yr bcos of covid and my mum has declined so much not to mention balancing my first baby. Im at her house all day everyday until she goes to bed. I would love her to stay at home but in my heart she really needs the security or someone being there 24/7. Only in the past two months she has had home care come in to help with the personal stuff and to bed bcos she can no longer walk, thats been a great help to both of us but its really at night she needs assistance bcos she takes episodes where she acts really odd, says really bizarre things, presses the medibracelt continusly, dials 999 which is all totally out of character for her also she forgots at times she cant walk so im frightened she may hurt herself. Like you bcos uve looked after someone for so long its hard to let go
Rhonatr my heart goes out to you You must be truly exhausted how old is your baby ? Because I do think your baby will get more demanding where do you live are there good facilities ? Sorry all the questions I think it would be so hard for you
I’ll tell you something my heart will never be ready to put my. Husband in care but my body is and has been for a long time people say look after yourself and you think yes I’m strong your child is going to need you and unfortunately your mother is going to get worse dont wait too long even start looking around get some respite try to get her into somewhere so she can get used to a place
You need your sleep at night to look after your child alone sorry if I sound bossy
We’re in Perth have a level 4 aged care package but it’s not enough nothing is for this desease !!
Take care and you still can care if your mum is in care xx
You’re ok with the questions my baby will turn 1 at the end of the month and yes she is into everything.
We live in Glasgow so we do have access to alot obv many things are restricted with Covid.
I hope to hear from the hospital social work in the next few days as they are going to assess my mums care needs whilst shes in hospital and will take it from their, hopefully my mum will come round to the idea.
Hello Pinjarra - We live in the US but unfortunately PSP is the same health travesty all over the world. I am in the exact same situation as you, only difference being my husband was diagnosed last Feb. We too searched for answers for three years of his rapidly increasing symptoms. And I have recently been diagnosed with a serious health condition myself. We are at the point where it is necessary to have at least two people care for him. The question of when to place him in a facility has been on my mind and the subject of many family conversations. I wish you much luck as you start this journey.
If you need surgery, of course it’s crunch time! It doesn’t have to be permanent. Hopefully, when you have recovered, you might feel stronger and more able to cope. Although I accept, once in there, you will realise how hard and unsafe it is at home for your husband. Steve use to go regularly into a home for respite. The first time I witnessed two nurses struggling to put him on the toilet, something I thought I could do with one hand tied behind my back, was a real eye opener.
Please have your surgery and decide afterwards if his visit to the nursing home is permanent or just temporary.
Sending very large hug, much love and I hope you recover quickly.
Thank you so much means a lot how hard it is to watch and cope with this desease I have never known anything like this and how debilitating it is my husband can’t do anything do himself now xx
Good luck with this. Having cared for your husband for 5 years it will be very hard to take the step that you are about to take but you do not have any choice. You have to have surgery and you have to look after yourself. Hopefully you will be able to visit him when you are better and if COVID allows and then you can spend 'husband and wife' time together instead of 'cared for and carer'. I am glad that you have found a wonderful place. Hang on to that fact and try to stop feeling guilty. Good luck with your op. Big virtual hug. AliBee
Hi Dance1955It was the hardest decision we had to make when she went into care, but we were lucky that our mum helped with the decision so the guilt was lessened. My mum was a manager at the nursing home for 22 years and the some of the staff now looking after her were her employees.
I try to put myself in mums shoes all the time. This helps me as I know my mum would not want me to have to care for her 24/7.
When it comes to your health you need to have the op, your good health is very important as it could be a long journey and you may find that your husband responds well being in the nursing home.
He can always go home for day visits.
It is so hard going thru this disease with my mum, I can imagine how hard it would be with a husband.
Thank you so much I’m glad your mum is familiar with the home you never think you’re going to end up there though would you ?I’ve been working in aged care as a carer for 20 years and then had to give up to look after my husband I’m 65 he is 72
I will bring him home for day visits lots were so lucky to have nice and caring facilities
Today is the day I’m doing respite for two weeks first but I really do need to leave him in there I know it’s so sad what we have to do isn’t it
If it was me I don’t think I would want my family to look after me I would want to be independent of that
It’s such a tough decision full of many different feelings. I have just gone through this with mum, I was her carer and there is no other family around. The pressure of looking after her, as
Well as my children, was intense. Like you, in the end, the decision was taken out of my hands as she had a fall which meant she had to go into a home temporarily. Although, once there, I realised how she is so much safer there, she has a variety of people and much more to stimulate her during the day so in the end she has stayed there. When I visited she would ask me to go home at first which was really heartbreaking but has gradually become used to it. The way I rationalise it is that I know mum, if she was her old self, wouldn’t have wanted me to go through the stress of looking after her.
Also, I feel that I can now just be her daughter again, I can visit and sit with her and enjoy her company. It’s really difficult to give up caring and expect tears but remember that your baby needs you too and it will allow you to focus on that as well.
I'm with Heady. If you need surgery and you are able to get it done in these Covid times you must get it done. So your husband will need to go into the home whilst you have the surgery & recover. That doesn't mean he has to stay there permanently if it isn't right for the two of you. My Mum spent 6 months in a Nursing Home and didn't settle, she moved back to her apartment and it wasn't perfect but she was happier & just as safe with the amount of support she had from carers & myself.So try the home, see how it goes. If it doesn't work out, maybe regular respite care is the way to go, or a live in carer. But it maybe the right place for your husband, you won't know until he tries it.
It is a hard deciscion to make & feeling guilty is very natural, but you must get yourself sorted out, so you are in the best shape to suport your husband in the future, whatever way that may be. Good luck & be kind to yourself.
Hi Dance1955, we all have feelings of guilt at some time whilst caring for someone with PSP/CBD as it difficult, frustrating and exhausting both mentally and physically.
The frustration felt by both when they are trying to tell you something but can't be understood. The loneliness felt when there is no longer any conversation.
I looked after my husband for almost 6yrs and had to make the same very difficult decision. I was up so many times during the night to take hubby to the bathroom, and on numerous occasions having to wash him, change his pyjamas and bedlinen or clean the floors because he didn't get to the toilet in time.
We had met with the neurologist in August 2019 and he said it was time to think of long term placement, as W was in the advanced stage of PSP. ( I thought he was in the middle stage, so that was a shock). He said professionals couldn't do what I was doing, (so carers please take note of the sterling work you are doing).
I left W into the care home 29 Oct 2019 and it was the hardest thing to do, but it was the day I went back to being his wife and I am so thankful for that. I visited him nearly every day and took him out for walks around the grounds in his wheelchair.
Have your surgery knowing that you have found a wonderful care home and your husband will receive good care. Hoping all goes ahead and you make a speedy recovery and enjoy being his wife again.
Thank you Nanny857 your words are so true all the frustration when they can’t talk to you today was his first day of 2 weeks respite before permanent I don’t think I can do it I can see me bringing him home he was Unwell today which didn’t help matters I’ll see how he is Tomorrow I so wanted this to work I wouldn’t want him to have to go somewhere else at a later date but I don’t think I can leave him this time just wish I had a crystal ballSometimes xx
It is hard, even more so in these strange times, but give him time to settle in, it won't happen overnight. Perhaps when you see how well he is being taken care of, you just might change your mind.
The first time W had respite was for 1 week at beginning of September 2019 after our visit to neurologist. I was told not to visit the first couple of days. Then every time I went to see him, he asked when was I taking him home and that was really hard but he was okay when I told him the number of days left. The next time was October as mentioned in my last post. Not once during his stay there did he ask to come home. I think the first time he was just nervous of the unknown, and of course they think just like us, that nobody can do as good a job looking after them as we can. But he got to know the nurses and they got to know him and he was content.
Are you allowed to visit or is contact by video calls? I do feel your pain, but please give yourselves a little more time. In the meantime rest as much as you can and look after yourself.
I really feel for you & lots so very hard to make right decisions!! I have worked in care for many years , so for me I struggled & still feel guilty when my husband went into care 2 years ago. He has PSP which was diagnosed two &@ half years ago but was initially told he had Parkinson's disease in 2014. He just got worse at home & I went part time bit it was still to difficult to keep him safe. He kept getting up thinking he could walk normally & would fall all the time , he had no safety awareness & was so unpredictable?? He is very well looked after but he does not communicate for the last year and a half do I have to try & lip read. Missing out on seeing him for 5months last year was so hard & face timing him was not great. He is much quieter now and looks sad all the time , I don't think lockdown has helped & PSP has progressed. He still has the odd fall but I tell myself it's all for the best as he needs 24/7 care. He just turned 70 & he is in Edinburgh home. Be kind yo yourself & good luck. x
Hi Caralime you poor thing isn’t it awful when they look so sad I too worked in care for 20 years I never thought I’d be doing it at homeWhat a nightmare it is isn’t it
My husband doesn’t fall anymore as he’s wheelchair bound but it’s harder in other ways like transferring him etc
We were fortunate to have full time live in care through a LifeForce. It was less expensive than a nursing home and 100% private care. Custom meals, company watching TV, car rides, shopping, you name it. Over 7 years, we only had 3 different caregivers. Neither me or my sister could live w my mom and her husband was deceased. But she did not want a nursing home at all, so we tried our best to grant her wish. She was able to die at home during Covid surrounded by 10 family members and her caregiver. It was beautiful. I’m very thankful for how awesome in home care is, if it’s for you.
As someone who thought I would hate a care home I now realise it will be best for us both in the long term. My husband disagrees at the moment but seeing how it is wrecking his life gives me so much pain. He says it’s ok but homes are set up for this sort of thing and there is the additional companionship,even if they are all ‘doolaly!so now I’m prepared just have to find somewhere affordable . After all, I might go that way eventually!!😆
I took care of my husband for a long time with PSP. He is now in the nursing home because of the many calls I had to make for the rescue squad to get him up. It is heartbreaking but After five months of looking through the window he started loosing weight at an alarming rate and I finally got compassionate care privileges. He can not speak and his hands and arms are clenched but I am feeding him twice a day since August 27th. It takes a while but I get to be with him about three hours every day. I shave him, I cut his hair and nails and alert the nurses to any needs.
The rest of my thread was cut off. I get tested twice a week and cherish the time I spend with him. He does react to what I say to him and this will not last but for now I am blessed.
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PSP brother's life ended with morphine without consulting him
Please God bring him home to you.
I lossed my husband and best friend. Really going to miss him
