Staying positive

My husband had a stroke 7 weeks ago and is having bad mood swings. The day after the bad mood and all it’s negative feelings he has completely forgotten everything that happened that day. Sadly this is not the case for me. I have to work at putting his thoughts aside. I don’t take his comments personally but it is still hard to deal with.
Each day I visit I don’t know what I am going to find. He is due to be discharged next week so home challenges will begin. I am hoping that at least I will be able to lose myself in a hobby for a while. We have carers coming in so that may be my queue to take a break. Trying to stay positive

Good luck with the discharge home.

Yes I should think that when the carers come it will be very good for you to take a break. A really lovely ex-work colleague used to use the time when the carers came to see his wife who had Parkinsons to go to the betting shop to place his weekly bet!

Before my stroke I was officially the carer for my husband who has hemiplegia and has suffered from post-viral fatigue so I’m used to actively seeking out a bit of “me” time. He has been very supportive since my stroke and our relationship is much more equal now, but I must admit I do enjoy a bit of time on my own still and I’m trying to gently hint that I’d like to try a visit to the library on my own next week rather than always being together

Shwmae @H5JHR, sorry to hear your husband is experiencing mood swings and that you are at the brunt of them. After I had a stroke, I lost my filter and experienced disinhibition which meant I couldn’t stop sentences I would rather have kept to myself coming out at inappropriate times. As I was heavily introspective about the stroke I had, the best thing I could do was let people know I had no filter. This helped immensely. It might be worth keeping that in mind but also your husband may not be aware he is experiencing these symptoms and so letting him know, and letting him know that you know, may help make it an open issue rather than a closed problem.

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Welcome to our forum. So sorry to hear about his stroke and mood swings. It’s really tough when you experience a stroke. We all have different types but we know how frightening it can feel not only for us but our families.

I wish you all the best for his home coming and keep interacting with us if you need questions answered we will all try out best to support you. Kind regards Loraine

Mood swings after stroke are part of the territory, but it is important that you have breaks. Hurtful remarks still hurt even though you know it is a result of his stroke. Try to stay on an even keel yourself. Talk to friends if necessary and joining a Carers group might help.

Yes I did a bit of ranting and said things I couldn’t explain which caused upset this passed over a few weeks but 18 months on I can on the odd occasion say puzzling things which are out of character and lead to misunderstandings . As recommended here speak to other carers for their support and look after yourself and when your husband comes home make sure you get out and enjoy things. After a bit of trial and error it all works out.

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Thanks for your comments. The forum is a great source of knowledge and support. So glad I joined.

I do have some great friends who are happy to support some in person and some on the phone. I just think I have learnt how to deal with one thing and then something else happens. It is a great big learning curve and nice to know others have had the same experiences. It helps a lot.

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@H5JHR it must be really difficult for you. Even if he can’t help it I’m sure the comments still hurt.
It’s really important that you have a break from your husband. Using the time the carers are there is a good way to do it. If you can try & find other opportunities too. Can someone else come & sit with him for a bit? His stroke doesn’t just affect him but all those close to him too. You need time to accept & adjust as well.
Hope the homecoming goes well.
Take care x

@H5JHR it’s tough position for you to be in, you definitely need to have ‘me time’ once he’s home and don’t feel guilty about doing so.

Best wishes

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My husband fell over in the hospital today as his knee gave way. He had to have a head scan to make sure everything was ok, which fortunately it was. I hope this doesn’t delay his discharge as he is getting more and more depressed and imagining that he is never going to come home. I know nothing moves quickly in hospitals but I do feel I need to keep asking for an update. Last info was that care was being organised which should be quick due to the area where we live. Fingers crossed…

@H5JHR oh sorry he fell over. I hope his discharge is soon. He will just want to be home. Great the support is being put in place. Good luck stay positive best wishes loraine

Great news Loshy. My husband is coming home today. He has been very down and longing for this day but told me he is apprehensive about a new routine. I too am a little nervous but we have support in place which is reassuring. I am starting to feel a bit emotional as the last 7 weeks have been very stressful. Lovely to have your support. I will keep you posted.

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Good to hear your husband is heading home. It’ll no doubt be difficult & very emotional for first few days until you find a new routine but it’ll settle soon I’m sure. Don’t forget this has been life changing for you as well as your husband.
Hopefully he’ll start to improve more once he’s home.
Take time to look after yourself too.
Best of luck xxx

@H5JHR ahhhh I’m so please for you both. Remember small steps it’s going to be emotional and maybe a little stressful. But between you I think you’ll do it and be ok. Don’t forget to take some time out for yourself too.

I wish you both best of luck and your hubby a great recovery. Look after each other kind regards Loraine x

My husband came home last Wednesday and it has been a nightmare. He doesn’t feel that this is home as everything seems dark due to his eyesight problems and he calls me so many times in the night I haven’t had a good night’s sleep since his discharge. I am going to remove the call bell and give him a night time pad for emergencies. I will have to shut my ears to his calls for my own sanity. He treats me like ringing for a nurse in the hospital. No consideration for me at all. He has fallen out of bed twice, once I had to dial 999. I feel shattered. Will talk to the carers today for advice as I can’t go on like this. He is quite abusive accusing me of only thinking of myself which is probably the other way round. Help!

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@H5JHR oh I’m so sorry this is happening to you and your husband. You were really excited for him coming home. It’s still early days I know it’s hard to hear but it is a slow process especially adjusting to being back home.

I hope the carers have some useful advice for you. He is probably frustrated and you will have to turn a blind eye but need time out for yourself and sleep deprived doesn’t help.

You can let off steam and rant to us as cost of us understand as we have been in your husbands position.

I hope it all settles down better for you sending my best wishes and luck Loraine

@H5JHR so sorry to hear its so difficult right now. I think removing his call bell is a good idea as it’s important you rest too. I know in some situations you are eligible for a carer at night. Might be worth asking the question when the carers visit today. Pads at night time are a must I’d say. He needs to try & improve in these things & thus might well help.
The transition home is never an easy one & I’d say harder for those looking after us. Really important you take time for you & he may just need to hear how he’s making you feel. He might not realise.
Sending hugs xxx

Shwmae @H5JHR, do you mind me asking how old your husband is? In my opinion as a stroke survivor, self-reliance is quite important early on, within reason that there is no danger or threat to the stroke survivor’s health. My partner did not mollycoddle me after coming home, there were times when I’d wished she would have but I knew it was essential I unravel myself first. I lived daily in a lot of quiet fear, and slept mostly, only waking to eat and exercise. My partner runs her own business, so she had to crack on with her things but for a year, she had to live a bit like a single parent and that was hard on her. It’s a sticky predicament, divorce and separation statistics are much higher after one partner has a stroke, it’s important to be pragmatic about your care-giver role, so that you don’t share the same emotional parallel of recovery as your partner. Please reach out to us at any time.

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Hi @H5JHR - you have my sympathy and understanding. When our Mum first came home from hospital after her stroke, she thought she was staying in a hotel in Eastbourne ! I think this was mainly related to the fact that the rooms looked so different, compared to when she went away. (Furniture moved, bed downstairs in what was the front room etc.) Also being in just the one room - the brain was playing tricks as it readjusted to the damage caused by the stroke. This passed after a while.

With regard to night time - my only advice would be to try and set out some ground rules…and not to take on anything that you won’t feel happy doing on a permanent basis in the future.

I only say this as we are now over two years post stroke for Mum - and like you - I have not had a decent night’s sleep in all that time. I get about five hours, sleeping on the settee in the same room, in between two or three wake ups to help her with the commode.

It was intended to be a temporary arrangement - until such time that she could manage the stairs to get back to sleeping in her bedroom - and to be able to manage some of her her own personal care. Unfortunately this has never happened, and we have now been doing it for so long…that trying to change anything will be very difficult.

I hope you have been able to talk with the carers, if not then maybe a call to the Stroke Association would help. They should be able to provide some advice and point you in the direction of further assistance.

Wishing you all the best…know that you are not alone.