I’m new to this online community and hoping that I can find some comfort and support. My dad suffered a very big stroke back in November of last year. It was incredibly tough and very distressing. He was 59 at the time, very independent and living with us at home. Following the initial treatment to remove the clot, he then had to have an urgent craniectomy to relieve the pressure, following a month in the ICU were he was ventilated and sedated due to chest infection. Before being taken to a rehab ward in January, he was bounced around 2 hospitals. I felt that he wasn’t supported and encouraged in the rehab ward (not like the other patients). I suspect some of it might have been due to language issues (dad now suffers from apasia and lost the ability to speak in English following the stroke), and partly because compared to others, he tried easily and they didn’t want to push him too far. He therefore had v limited gait training, which was the most important thing for him.
Fast forward and it’s time for him to come home. I fought in the hospital for him to be discharged home with a package of care. I was really worried that if he went to a care home, he would regress even further.
He’s now been home for about 5 weeks with a package of care. It’s been incredibly difficult to care for him. I’m now considering whether a temporary move to a care home or nursing home is better. His needs are difficult to manage in between care calls, mainly the personal care and issues with toileting and incontienance.
I’m incredibly upset and feel like I’ve let him down, but with working full time I’m not able to provide him with the full care he requires. My mum is also 61 and has her own health needs. I’m riddled with guilt at the thought of dad going away, and worried I’m making a mistake and that instead of getting better he’ll get worse.
I’d be so grateful if anyone could let me know if they’ve had a similar experience. Any guidance would be much appreciated. Ideally I’d like a move away to be temporary and hope that dad gets the physio and support he needs at the placement in order to get better and come back home.
I hope you will find the comfort and support you seek following your Dads’ stroke last November. As I understand it, your Dad has been discharged to home care and has a care package which I would hope meets his care needs.
It seems you might be partly responsible for some of the care?
From what you have said, I would expect your Dad as the highest level of care package i.e. 2 carers coming 4 times a day. But that is just based on the “limited” information available in your post.
It is now coming up to two months since he was discharged home and so I would hope things have settled and you are all coping with the situation.
There is help available but first you might have to identify what help you require. Each case is different and so it is difficult to offer specific advice/information remotely e.g. via this forum. But the help is available and hopefully you have been given a primary contact for your Dad’s care needs and your Dad’s GP is often a good place to start in the absence of anything else.
We were in a similar situation to you when Mum was discharged home and it took a while to get used to the situation and it wasn’t easy. We had to learn so many things including how to change nappies, feeding, medicines etc. And it was hard working with carers who did not understand how to help Mum (with the stroke specific care needs and severity of her condition). This made the situation very stressful, but we worked through it and today we are still here to tell our story and share our experiences.
You can find out more about our story by doing a search on my user name or if you have specific questions, please feel free to ask away.
The main thing for you to get right is to ensure Dad gets the care he needs and you and your Mum get the support you need to help you look after your Dad.
If you haven’t already contacted the Stroke Association as recommended by Ann @Mrs5K in her response to you I would strongly recommend you do. For us the Stroke Association were very helpful and helped us relax and come to terms with the situation we were in at the time. Their support was incredible for us and that is one of the reasons we are here on this forum.
You are not alone and your Dad will recover with the right support and encouragement
I’m so sorry to read about your dad’s stroke and how awful you’re feeling. I empathise. My mum had a huge stroke in Feb '24. She’d make good progress then crash with recurrent lung infections. She then regresses. My step-dad collapsed from exhaustion - they’re both in their late 70s - recently and they were both in hospital at the same time! My life was also turned upside down as my step-dad is autistic and unable to be the carer he needs to be for my mum who has complex needs. Including aphasia.
Due to the ongoing situation, we’ve decided a nursing home is safest place for my mum, and my step-dad whose health is declining.
I appreciate there’s nothing easy about your situation but my advice is to hold firm on your decision. And, you can see how things go for a few weeks. Some people improve in the right care home as they get the care they need.
Be fussy about the care home - visit as many as you can. Ask care home managers loads of questions and if you can target the ones with ‘good’ and ‘outstanding’ CQC ratings. I turn up without calling ahead so I have a better chance of seeing the reality (giving them no chance to ‘prep’ for my visit).
Many care homes are absolutely lovely (like 5 star hotels). But these are top of the range and expensive (£2k upwards a week). ‘Cheaper’ ones take council funding to cover all care needs - but be sure to read the CQC inspection reports.
Thank you all so much for all your kind words. I really have found so much comfort and peace reading all your wonderful comments. Thank you.
We’ve managed to find a nursing home for dad. He moved today. It was incredibly difficult and a strange day filled with so many different emotions. It really was so difficult at home. Between managing the care calls, working full time, and attempting to manage dad’s care needs in between the care calls. I’m glad he’s moved to somewhere where he has 24 hour care and I just pray and hope he gets better so at least one day in the future he can come home.
It’s so strange to think that one moment can change everyone’s life. My dad was such an active man and I mourn the person he was before
I am so pleased you managed to find a nursing home for your Dad.
This hopefully will mean he gets the care and attention he needs and also you can also get some time for yourself. You should try to get some restful time for yourself and recharge your batteries.
I know it might be hard to believe, but the person your Dad was before is still there - he just needs time to come back out. Relatively speaking he is still young and with the right care, support and rehab you will hopefully get him back home where he can be himself again.
Glad you have managed to sort a home for your dad. It will feel strange but it will allow you time to do all the things you need to safe in the knowledge that your dad is being cared for.
It is strange how life can turn upside down in a split second.
