I have had a stroke. I am the full time carer for my husband who has dementia. I’mNot sure what to do.

[SUNTA]

I had a stroke on New Year’s Eve. My wonderful family sorted everything out. They got me to hospital and have been caring for my husband who has dementia. I am home now and, due to the nature of the stroke, need to be very careful for the next few weeks or so. My family are exceptionally loving and giving but the reality is they all have jobs and families and live too far away to sustain indefinitely the support they’re providing now.
I know we’re going to need support at home but I can’t seem to sort out in my head exactly what’s required. I know my daughters have been doing some research re in house support and potential residential respite for my husband; should I require a hospital stay again in future.
Ideally, I’d like to find somewhere that offers day care within a good dementia nursing home for my husband. I would prefer that he has the opportunity to become familiar with the people and place so that he is not upset and stressed should he need to stay there in an emergency or for respite in future. We live near Northwich in Cheshire West. I’d be so grateful for any advice or recommendations.
Thank you!

 

[Grannie G]

I`m so sorry to hear this @SUNTA and hope your wonderful family will continue to support you and your husband.

I`d like to welcome you to Dementia Talking Point and hope any advice you receive here will provide the support you need.

 

[Izzy]

Welcome from me too @SUNTA.

I’m so sorry to hear about what has happened but very glad you have such a supportive family.

I’m glad you have found this forum and I know you will find understanding and support here.

 

[SUNTA]

I`m so sorry to hear this @SUNTA and hope your wonderful family will continue to support you and your husband.

I`d like to welcome you to Dementia Talking Point and hope any advice you receive here will provide the support you need.

Thank you

 

[Erion Zane]

I recommend reaching out to local care organizations and dementia support groups in the Northwich area for advice and recommendations on good nursing homes that offer daycare for individuals with dementia. Additionally, you can also check online directories and review websites for ratings and comments from families who have utilized these services.

 

[SMBeach]

It took me over a year to get Homecare services for my dad in Scotland. Like you I struggled to know what care he actually would benefit from as what he really needed was someone to do his laundry, cook his meals and keep an eye on him, get him to appointments. He has no family in Scotland helping. Just me and I live in Kent. Social services just kept saying they don’t do laundry or cook meals. They only pop things in the microwave which he could do himself but he hates microwave meals and seldom enjoys any as a result. So he just eats biscuits, sweets and fruit. I ended up getting a cleaner in which dad pays for to do his laundry and clean the house which is difficult as it’s so cluttered. As he got worse I continued to ask social services for support and they continued to say they were too busy and had to prioritise those coming out of hospital or bed bound. They’d do laundry for someone bedbound but for some reason not do it for someone with dementia who because of their dementia could. I was unable to comprehend this. Somehow they were saying dads needs weren’t so deserving. I was increasingly worried about him living in his own. Eventually during a routine doctors appointment which I wasn’t at, the doctor obviously saw my dad looked neglected or that he needed care and took it upon himself to contact social services. I had no idea he’d done this and suddenly I had the Homecare services calling me saying they’d put things in place. They said when a doctor refers someone they’ve got to act on it (although it was some weeks after that he actually started to receive support). Medication was my biggest concern as dad wasn’t taking it. He’d forget. He’d also lose it. Or wouldn’t know he had it. For the first time ever, he was going to actually be taking his medication as it was now in the hands of carers. Dementia support is just been out in place through me asking social services to refer him. Until I actually said those words, nobody would even put us on a waiting list. You need to spell out and ask for exactly what you want. It’s terrible. I don’t wish to sound all negative as once you start getting some support it does help but just make sure you say what you’d like to happen. I waited over a year and I could tell nobody ever put dad on a waiting list despite my calls.

 

[SUNTA]

Thank you everyone. I’m sorry my response has taken so long! Despite the lateness of my reply I assure you I have greatly appreciated all of your support and advice. I took Erion Zane’s advice to reach out to local groups and my hubby has been successfully going to day care and other wonderful activities run by the Alzheimer’s society and age Uk. It has been a great help to me in managing his condition and my my own. However as his condition deteriorates I worry about how long I can physically sustain his care eg getting him up, showered, dressed and out is becoming increasingly difficult and I don’t want to become so exhausted and stressed again that I have another stroke. I have found a very lovely carer who has helped out a little occasionally. I feel I would like to have her come more regularly. We have talked about it and she is happy with this plan to extend her time. I am happy to try to manage things at home to accommodate the times she has available for her caring role around her existing commitments.
Has anyone else worked in this way or have any advice about how best I can use a carer’s expertise?
Thank you all!

 

[Waitinggame]

Great to hear you have found day care and other activities for your husband. That must help you a lot. Regarding using a carers expertise, perhaps you should consider the help and times which will help you most. Your present carer seems very helpful and you may be able to manage with the time she has available at the moment .In the longer term though have you thought of how you would manage if she is unwell or on holiday. You may feel you will be able to manage this yourself but it may be worth considering local authority or agency help as they should cover these absences. As has already been said some help can take a while to set up so perhaps look into having a local authority assessment soon. In the meantime make the most of the time your present carer has available. Keep us updated and look after yourself

 

[SherwoodSue]

Also with regard to your own needs the Stroke charity has a helpline. Mum found it really useful to talk to someone there after her stroke, to do with feelings and practicalities

 

[Izzy]

I think this might be the Helpline @SherwoodSue mentions above -

Stroke Helpline

If you have a question or need to talk, our confidential Stroke Helpline is here to support anyone affected by stroke in the UK, including family and friends. Call our Stroke Helpline now on 0303 3033 100 or email helpline@stroke.org.uk. We'll help you find answers on anything you want to know about

www.stroke.org.uk

 

[SherwoodSue]

I think this might be the Helpline @SherwoodSue mentions above -

Stroke Helpline

If you have a question or need to talk, our confidential Stroke Helpline is here to support anyone affected by stroke in the UK, including family and friends. Call our Stroke Helpline now on 0303 3033 100 or email helpline@stroke.org.uk. We'll help you find answers on anything you want to know about

www.stroke.org.uk

Thank You Izzy

 

[SUNTA]

It’s now 26 September ‘23 and how things have changed! As @Waitinggame predicted my lovely carer was only able to help - until she wasn’t - due to the demands of her own family. I continued to struggle on for a while and then events took over. My husband collapsed due to his heart being unable to pump sufficient oxygen to his brain. He survived, thank God! However he was in hospital for a long time with heart and other problems and eventually transferred to a dementia nursing home. In the great scheme of things I know I have much to be thankful for, but at the same time I struggle with feelings of guilt that I’ve let him down by not being able to cope at home. It’s not logical as I know intellectually he is safer and in the main happy there, yet still I harbour fruitless longings that he could still be be home. It’s so very sad.

 

[Grannie G]

Heart and head are always conflicting @SUNTA. No one wants their partners or parents in residential care and yet we know it is the necessary alternative.

You are probably suffering more than your husband.

 

[SUNTA]

Time passes. I feel joyful that it’s over a year since my stroke. I am also very relieved that I didn’t have the worse follow-up stroke the medics had been concerned about.
A lot has changed. My husband was not doing well in the nursing home and eventually I decided to bring him home. It hasn’t been easy. Everything has changed and the house itself has become like a nursing home, with all the associated paraphernalia and carers coming and going. Friends, medics and our adult children cautioned me against bringing him home. They all warned me that he wouldn’t recognise home, and they were right, but I held onto my own instincts and focussed on the words of one wonderful OT.
She alone said “You know him better than anyone, trust your instincts and be well prepared. He may not recognise home but he will recognise love!”
I can’t begin to explain how much her words of support helped me then, and still do, now that he is home.
It certainly wasn’t easy, particularly at first, but he settled much more quickly than anticipated. He is so much happier in himself and sleeping and eating well. Although he often cannot communicate what he tries to say, a hug works wonders.
He is still continent so that is a blessing; though without going into detail, things are beginning to change in that department too.
I don’t know how long I will be able to cope, but I’m glad I brought him home when I did.
I’m realistic and so I’m still searching for a comfortable loving home which would suit him and where he can have short respite stays. I don’t always sleep well and I do get very tired, so it would be good to have some fairly regular respite breaks if possible.
I have been so fortunate in the caring friends who make it possible for me to get out of the house sometimes.
I’ve found it very difficult to give up the life I/we had before dementia and it’s been tough to learn to take one day at a time but in the end it is necessary.
Almost 47 years ago I promised ‘for better or worse’. We enjoyed a lot of wonderful ‘better’ years together but now I am happy to try to keep my promise to be there for him as together we face the ‘worse’ times. Even in tough times there are moments of joy!

 

[Grannie G]

Such a hopeful and thoughtful post @SUNTA.

I’m please all has worked out as you hoped while taking into account the effort you must have made to keep your husband at home. I hope you will have much longer together.

 

[SeaSwallow]

What a beautiful post @SUNTA. Thank you for sharing.

 

[Izzy]

Thank you so much for the update @SUNTA . Such a poignant, beautiful post. Thank you so much for sharing.

Wishing you both all the very best.

 

[Fabian]

Thank you Sunta, thank you for taking the time to share your experience. I found the OT’s words of ‘not being able to recognise home but being able to recognise love’ very moving and helpful.

 

[sheepfield]

Thinking of you. I'm new to the forum and just wanted to add that you also deserve care and attention especially as things change over time for you both. I really hope that you can find that respite soon. I've had a few years of caring for my autistic husband and a family member who is hopefully soon going to have a memory test with specialists. I have support from carers groups with the daily grind but I'm thinking that some respite would be a real tonic. And happily there's lots of love and joy in our situation too.

 

[DollyClaire]

Hi Sunta, Can admiral Nurses help to take care of your husband so you can get the care you need? They can be found on the dementia website.