I have been looking after my husbsnd since 2019 with PSP although the symptoms were apparent much earlier.
I've seen a dramatic deterioration over the last year or so and he is currently in hospital with aspiration pneumonia and is recovering.
it's been a tough few years,I still work full time and have carers come in 3 times a day but they are literally there 10 minutes if that. My husbands consultant said backnin February that he needs 24hour care and 24hour supervision which I can't provide with working. His pneumonia has occurred because his swallowing is getting worse and he needs to be prompted to swallow. The hospital wanted to put a peg feeder in his stomach but he doesn't want it and neither do I so we have declined as eating is one of the few things left that he can enjoy.
I have a best intention meeting with the hospital tomorrow as they want to discuss his potential discharge and the best place for him to go. He seems to have deteriorated more mentally since the pneumonia and still has some episodes of delirium which they have said may be permanent.
I personally feel now at this stage of his illness that he would be better looked after in a nursing home as I don't think I will be able to cope if he comes home and I can't give him the 24hr care he needs.Plus he needs two carers to lift etc but when there not there it's just me and I really struggle on my own.
I just wondered if others have been in this position and what you did.
I'm worried the hospital will try and send him back home but I really don't think I can cope anymore.
xx
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Joze121
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Hi Joze Sorry to hear about your situation. My parents were in a similar position last year when my dad had been in hospital with aspiration pneumonia.
Are you on the UK? If so, I’d recommend you speak with your husbands consultant and ask that the hospital discharge team to assess your husband and make a fast track NHS CHC application for 24/7 care. This could be either for a nursing home or home care, depending on your circumstances. My dad got 24/7 care at home.
He didn’t have a peg either - definitely the right choice.
Wishing you all the very best in these tough times,
Hi Red thanks for your reply, I did apply for CHC and we were assessed in May and refused as they deemed that he wasnt ill enough then. I suppose its different circumstances now so I will mention it today in the meeting, We are in the UK, im not sure how 24/7 care works at home but I have no spare room for someone to live in so a nursing home would be better for him. I dont want to go down the Peg route. Thank you so much for your reply
Sorry to hear you are going through this. We have just gone through a similar experience following my mums hospital admission with Covid. She has CBD and struggles with speech and mobility. Her needs increased with 2 carers needed for hoisting, and time and patience for feeding. If you are able to research and view good nursing homes in your area we did this. Ask lots of questions to find the best fit. We decided on one a little further than we had hoped but are happy with the care report, staff and facilities. There are no strict visiting hours so we can pop in anytime.
As the main Carer you must feel incredibly tired and your life must revolve around your husbands care. I was arranging care rotas and payments privately and covering for staff absence, it can be a lot to handle. Look after yourself, it sounds like you have committed a huge amount of time for your husbands care and need to have the energy for your job. I was worried that my mother would be upset and distressed but she actually looks quite content. They have additional equipment and wet room facilities that she didn’t have at home and when you consider the costs it is not too bad, if your husband is eligible to funding too. We hope to have a meeting with the care home now she has settled after 2 wks to make sure all her needs are met and to communicate our wishes for her best quality of life.
Thank you, that puts my mind at rest knowing what you have just said about the care home. My husband hasnt had a shower in over a year and just has bed washes with a flannel. I cant carry on the way I'm going and he's only getting worse as the months go on. I too think once he settles in he will be happier there than left at home for long periods alone.The palliative care team are in the meeting today so I'm hoping we can all agree the best for him and me going forward. thank you for responding, appreciate you sharing your experience.
Hi Joze, I understand where you are coming from. Please look for a good nursing home nearby. I cared for my husband until I was exhausted and ill myself, having to have surgery etc. before I gave in but having him in a nursing home now has made such a difference to my life. I visit daily and do the things for my husband the staff don’t have time for. But I can leave the rest of the responsibilities to the care staff who are there 24/7. He has a chest infection at present but they do the night shift and I am able to get my sleep without being woken up constantly. Also his personal care is being better attended to than when he was home with carers 4 x a day. All the best to you both.
Thank you ,that puts my mind at rest. Im sure its the right decision for him and I just hope the health professionals in the meeting agree with me that a care come is the best option going forward. xx
Thank you for your comments, my meeting was cancelled yesterday but after speaking with a social worker, he is going to be put in a care home for 4-6 weeks to be assessed and then we will have a meeting to decide where he will go. The nurses at hospital told me last night that they dont know how I've managed for so long being his main carer and that theres no way they would recommend him coming home which makes me feel easier.
Hi Joze ... Just a side note... you can use the end of the 6 week period to trigger another CHC review. This is the best time to do it as the team looking after him will be able to provide a real in depth assessment of his needs. It's all such hard decisions - we're in exactly the same place at the moment and it's not easy. Be kind to yourself.
Hi Joze121Your story sounds oh so familiar, my mum has PSP and was only diagnosed last year after yet another fall led to her being laid on the bedroom floor all night as she couldn’t reach her lifeline. She had carers go in 4 times a day and myself and sister going in between ( she would tell the carers she didn’t want anything doing so they would be there 10 mins doing the bare minimum ) then ring me asking me to go round and do stuff.
I can fully empathise at the difficult position you are in, never in a million years would I have imagined putting mum into a nursing home but something had to give. I am a nurse so mum relied heavily on me and before the fall that got her admitted was ringing me at all hours during the night asking me to go round to hell her get to the toilet. I was often getting up middle of the night to go round as she had me worried and a lot of the times when I got there she was asleep! I then had to go to work and do a 10 hour shift as well as looking after my own family.
During her last admission to hospital the registrar asked if mum had been investigated for her falls and a few other noticeable symptoms ( walking gait, slow speech, eye movements, choking episodes ) which despite me ringing her GP numerous times had never been investigated. Almost straight away PSP was mentioned - I myself had thought Parkinson’s because of the way she walked but the other symptoms didn’t fit in. Strangely enough it was a relief finding out and being able to speak to someone who understood. At a meeting prior to mums discharge he told me she would need 24 hour care - she could no longer walk independently and needed 2 to transfer so suggested a nursing home would’ve the best choice and would give us our mother/daughter relationship back rather than us being carers.
My sister works clerical for social care so was able to ask social workers for recommendations for nursing homes and we visited a few. The one we decided on is only small and in an old Manor House set over 2 floors. Mum has an end room upstairs she is now totally immobile, speech has drastically worsened and like your husband her only joy is her food which she is managing normal diet still. The speech therapist visits and has talked about a PEG tube but she is not open to the idea and refuses to entertain the idea.
It’s not home but we have furnished the room with her own belongings and she spends much of her time on her iPad doing jigsaws, we visit most days and although she sometimes cries and says she wants to go home we know we made the best decision. She has to be hoisted everywhere now and is sometimes incontinent - she is able to have a shower there (or bath) which was becoming impossible in the flat she was in .
There’s open visiting which I like as it shows they aren’t hiding anything, plenty of social events which involve family. Like anywhere they are often short staffed but on the whole we are happy with the care.
I know it’s a hard decision mum was fast tracked on CHC initially which eased things - it’s not an easy decision to make and we were worried what people would think but until you are in that position you can’t judge.
You know in your head what the best decision is and how with it not what you feel in your heart - you can go back to being a wife and visit as often as you want, if nothing else it kept my sanity as I was teetering on the edge after trying to keep everyone happy( we had lost my dad a year previous after nursing him through cancer so felt we should look after mum the same but dad was mobile right up until the last month when he went into the hospice)
Hope this helps show you are not alone - message if you need to chat
You echo almost identically my situation when my Mum went into a nursing home. The hardest thing I did was admit to myself that my relationship was being tested to the limit by the situation we found ourselves in. I was getting into bed and waiting for the phone to ring every night to say there had been another fall, having already spend hours with my Mum after a day at work. Admittedly the care home wasn't a happy place for my Mum, challenged further by strict lockdown rules and her reduced ability to communicate, but the staff were kind and caring- it was just my Mums feelings of isolation and frustration which would probably have been almost the same where ever she was. I'm sure things would have worked out better had COVID not restricted contact so harshly.It's a hard journey, and unfortunately I had no support from other family members, but I'm at peace knowing I did everything I could for my Mum. Good luck on your journey and be kind to yourself
My word it is almost identical! My mum also gets frustrated more so now her speech has deteriorated we have tried a few text to speech apps but she doesn’t have the patience to sit and type out a sentance and when she does she presses letters twice or misses them so sentences don’t make sense. At the min she’s preferring a chart used by stroke association, some days her speech is better than others It’s a hard call but hopefully I too will find peace knowing I’m doing the best I can by her. I still feel guilty if I don’t go in every other day at least - there’s plenty of activities but she won’t get involved or leave her room if I’m not there.
We can only do our best - I have a daughter at uni and one leaving to go on Sunday so I’m spending time with her this week but have the underlying guilt of not being with mum every day
Oh no sounds like you have had a terrible time too, my meeting was cancelled but I spoke with a social worker and he is to be discharged and put in a care home for 6 weeks to be assessed and then in the mean time i can start to look for suitable care homes in the area. The nurses at hospital were shocked I've been dealing with this as his full time carer since 2019 especially due to his state now but they said no way would they suggest him returning home.To be honest I feel like he's getting near end of life, since having pneumonia, he is different and seems a bit delirious which they've said may not go. He thinks he's at home sometimes, thinks he can walk normally as tries to get out of bed. before i got there last night he had been shouting for a nurse and because she did'nt come he started shouting my name apparently. His eyes look dead if that makes sense, when he looks at you, he's not looking at you and he's sleeping most of the time which is'nt like him. His swallowing is going and he forgets to swallow and he's confused which is'nt like him.
I know the inevitable is coming I just hope we can make his remaining time as comfortable as possible.
I'm so sorry you have had a terrible stressful time with your mum but at least she got diagnosed in the end and she eventually got the care she needed and you got the rest you needed,
I really dont think these social workers, family doctors etc really realise how hard being a carer is especially dealing with PSP.
Hi Joze it’s awful for you I am in the same predicament but live in Australia we’re English though My advice is to go for the nursing home even if you had enough money to keep your husband at home ( I would have loved that ) how good would it be with one person to do everything
Find a good nursing home put lots of signs around the room don’t assume anything they will have different staff visit often and let them know if something isn’t right
Try not to beat yourself up about it he will probably get better care than he would in hospital
It’s the worst disease ever he will still be your husband you can take him out visit be the wife again and not the exhausted one
Its the right decision, the nurses told me last night that theres no way he should come back home as he needs proper care.I only managed to get carers in Jan because my husband had refused them previously.
It is the worst disease ever, I feel for anyone having to deal with this xx
Yes the worst thing is no education about this disease we have to research information why can the professionals do that too I wish there was more information available I got told no treatment no cure when my husband was diagnosed 9 years ago
Hi, I hope all is well in Australia. My mum has just gone to a nursing home, you mentioned putting signs up in the room. I’m keen to do this but don’t want it to appear the relatives are being bossy or pushy! Mum has lost her speech so can’t communicate if she’s hot and doesn’t need tucking in with lots of blankets. What sort of information did you display if you don’t mind me asking? Thanks
Hi Brodie display everything that worries you they you also do as do assume they will know as mum can’t say Don’t be laying awake wondering if they will understand mum just write it all down either on the wall or give them a copy of her care plan ie: what you do for her
I’m sorry but I don’t trust anyone till they’ve proved themselves
Also the staff change all the time things aren’t handed over
My husband has been in and out of several Nursing homes because of bad communication
Don’t mind about being a nuisance too bad they get paid !!!
honestly don’t mind about being pushy I worked in aged care my self and worked hard
Yes I am being pushy that’s my husband and if I can look after him for 9 years so can they
You do the same don’t be too polite your mum needs help so just put the instructions up
Trust me 😉 you might even get some respect for what you have done my husband lost his Speach too I am his voice and they know it 👍
Best of luck with it all it’s soo heartbreaking either way isn’t it x
I took care of my wife with the help of home care workers for 3 years. Last year I made the difficult decision to move my wife to Continue care as it was not possible to care for her safely at home.
Toileting, meal preparations, fluid thickening, and bathing required specialized knowledge and tools.
From my personal. the experience I found myself wondering if I did make the right decision and a year later I can tell you it was a necessary decision.
Her care is more integrated with access to a doctor and a team of therapists.
I visit my wife every day often twice a day in her private room. I take her offsite to work with a trainer for strength and Sunday visits with our grandsons.
Her condition has deteriorated considerably and she cannot eat without being fed and is completely wheelchair bound and so on.
At the risk of sounding repetitive, my wife needed to move to gr the care she needs.
I completely understand what your saying and think my husband now too needs that care that I cant provide. Its good to know others opinions and experiences so thank you xx
Joze, I went through something similar in March with my wife. I ponderred long and hard over nursing facility or keeping her at home and eventually settled on the at home route. I made it based on what I would want for myself. I will not kid you though, it is very hard on the caregiver. I hired full time help (two 12 hour shifts) but they were pretty marginal. Eventually I paid a nephew (who was layed off) to come and stay with us full time and that was a God send. All of this only lasted about 2 - 3 weeks though. You will find that they deteriorate very quickly when they get to that stage and then one day they will "turn off" and it will be a matter of just days until they pass. Do the best you can and do what is right for you. All the best.
I do wonder if he is approaching the final stages as since the pneumonia he is distant and his eyes have gone if that makes sense. He is sleeping a lot and I'm struggling to understand him. The nursing staff said last night that no way should he come home as he needs nursing care so I'm glad they said this as its the right way to go.Thank you for sharing your experience, it really helps. xx
My husband has just gone in a nursing home a big decision but 24hr care which like u was difficult at home but he's happy and now l can be his wife instead of a carer. Jill
As far as I know, If you say you need a Care Plan , the hospital has to sort this out before your husband is discharged. They may, however send him to a temporary place, until a Care plan is in place. I nursed my husband for several years.
He was refused Continuing Care, because I was dealing with his needs and I had carers to shower and dress him, each morning.
I was in my 70s had recovered from breast cancer twice and suffer from asthma, arthritis of the spine and spondylitis, but this was ignored.
Eventually, after fighting for it, we got a little help towards payment for his last three months care.
I found a nursing home that had been started by a doctor from our hospice. It was like being at home.
I could stay in his room all day and night, if I wished.
My husband's treatment was superb and we were kept informed and asked about our wishes on a regular basis.
My husband originally would have preferred to be at home, but I knew that his pain control could be a problem. The Care Home kept it under control.
It is hard to fight for help and it can be expensive too. But I was so glad that my son and I had researched various Care Homes, before our need was urgent.
After seven weeks, my husband died peacefully with myself and our three children at his side. We were listening to nd gently singing, "The Holy City" , one of his favourites.
I do hope that you find such a place as I did.
It takes a lot of pressure off you and I found that instead of a Carer, for those last, few weeks, I could just be a loving wife, once more.
Thank you for sharing your experience. That means alot.I have a best interest meeting this week hopefully. He needs care home care or nursing care now. He told me this afternoon that he was having his final operation tomorrow which is utter rubbish. He was not like this before his pneumonia but he has been asking for an ambulance etc and not making sense.
Its a shame but he's mental and physically deteriorated further so hopefully we will get the care that he needs.
We have been refused chc once already but maybe we can reapply now and possibly now he is worse it may be approved.
I hope you get it. Do not feel guilty about having to hand over the day to day care. You yourself need a break and to recharge your batteries. You can now spend quality time with your husband . Holding his hand, watching TV together, listening to music etc. Anything that makes you feel close .
So pleased for you, my mum went from hospital to a care home. Now she is on the nursing side. We have been fighting with the dietitians as they want to put a peg in as mum won't eat but the doctors and my family are refusing as we know mum wouldn't want this,mum is very stubborn, she knows what she is doing.
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