How is everyone. I have just come out of hospital after being diagnosed with pneumonia and COPD. Luckily my son and daughter took it in turns to stay with Alan and look after him. despite him being told that I had been in hospital and am now having carers myself, bless him, in Alans world I am his carer and when I do ask him to do something for me I am told that I am lazy and I am his full time carer. I don’t know what the answer is and will he ever comprehend that for now I need help but in the meantime I am exhausted just trying to do things that he is more than capable of doing.
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My advice would be vitamin D for COPD ; possibly a UVB panel and a RLT panel
At this stage, I went and looked it up just to check I’m not talking nonsense
Vitamin D deficiency is common in people with COPD
How does vitamin D help COPD?
- Vitamin D has anti-inflammatory, antimicrobial, and immunomodulatory properties.
- Vitamin D deficiency can lead to reduced lung function.
- Vitamin D helps regulate calcium levels and is important for healthy muscles and bones.
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Thanks Pando, I will get some.
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Just want to add vitamin d is recommended for most people from the UK/Ireland over winter months anyway. So definitely try taking it.
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@Sonia158 sorry to hear you’ve been in hospital. Hope you are on the mend.
I wonder if you need to be a bit harder with Alan. Easy to say not so easy to do. Leave him to do the things he can do himself. Could the carers you have perhaps have a word with him? Tell him if you don’t take it easy then you won’t be able to look after him at all. Maybe your children could have a word too.
I appreciate it is a very difficult situation but please make sure you take the time to rest that you need.
Best wishes
Ann
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Good reminder Matt. And the full / real story about D is so far reaching. I should say sunlight, really because that’s the key ; the great disconnect we have from Sun + Gaia
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That’s very good advice Ann. @Sonia158 should try to make sure she does not over do things as the main Carer for Alan. Perhaps get the children to help more and also to talk to Alan. Without knowing Alan’s conditon, as Ann says, it might be easier said than done.
It can be extremely difficult being main carer and having a demanding cared for person though it is not their intention I am sure. Sometimes you do feel drained from being pushed to the limit, possibly missing out on quality sleep (very important) and possibly missing out on things you need to do for yourself to keep yourself healthy both mentally and physically.
Take care and as much as you want to do your best for Alan, you should also be fair and kind to yourself.
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Sunlight? I don’t know what that is for 4+ months of the year over here!
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Lack of Vitamin D in winter months is a big problem. I must confess I am guilty when it comes to not taking my D3 supplements. I’m just not used to taking supplements 
I try to get out for 30 minutes each day to get the natural form of vitamin D. As I understand it, it is the UV from the sun produces vitamin D but takes a bit longer than on sunny days. That said the window is between 11 am and 3 pm in the UK which might not suit everyone.
Worth making the effort though as it not just the vitamin D you get from a 30 minute outing.
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Exactly right , no D for 4 months of the year… BUT there are still benefits from getting the Sun. Whereabouts do you live, Matt?
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Northern Ireland, it is very grey a lot of the time unfortunately.
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Well, brace for impact, storm Eowan about to pay you a visit ; Bristol here ; not much different ! R
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I get vitamin D on prescription. Ask your surgery.
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I have tried, I have also tried to get the carers involved but in their eyes they are supposed to be helping only me to do things and basically they tell me it is not their role to get Alan involved. I think it was an eye opener for my kids when they stayed they hadnt realised how much I do for him. Unfortunately they all live so far away. I really dont know what the answer is but I know I have to face up to the fact that he will nevere recover.
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Hi @Sonia158 Sorry to hear you have been unwell and are struggling with this difficult situation.
I really don’t know what the answer is but you must take good care of yourself, if you end up back in hospital you won’t be able to look after Alan at all.
Best wishes and I wish you a speedy recovery.
Regards Sue
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My heart goes out to you. The difficulties you are experiencing because of your husband’s cognitive dysfunction are heart breaking and so draining for you, even without the physical demands of caring. Has your husband had a recent Social Services assessment of his care needs?
Each person like your husband, has specific strategies that may work for them.
Can you think back to how you got through to him when he did start doing a bit more?
I know you said there has to be a year for referrals for his specific problems but I do wonder if your GP could refer you to mental health services for some pointers from an OT who works in the mental health field for example.
I understand how isolating it must feel for you, especially with family some distance away. Perhaps one of your children could advocate with your GP on your behalf,as with all you’ve got going on, I doubt you’ll have the energy.
My thoughts are with you.
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Hello @Sonia158 ,
I would like to start by saying this is a lengthy note and I have written it as my attempt to try to help if I can. I intend no malice or upset which can sometimes unintentionally happen when you write things down. So please accept this is a sincere attempt on my behalf to understand your situation fully and to help you as best as I can. Of course, you can totally ignore this if you so wish. 
I am sorry if I am causing some confusion here by joining your case at a later stage from when you first joined this community and getting involved. I am a member of this community and it is my objective as a carer to get help and to offer help when I can. It is for this reason that I often chip in with my tuppence worth as it were
I am not 100% familiar with your whole case, but as I understand it you are main carer for your husband Alan who is a stroke survivor. Whilst you were caring for Alan, you yourself became ill and ended up in hospital. Having been discharged from hospital you are now finding it difficult to care for Alan
I note you say in a response to Ann @Mrs5K’s advice that
To help me better understand your situation so I can help you, I read up some of your other posts on this forum and note that in October 2024, in a post titled Friends, you said the below.
Unless I have misunderstood, back in October 2024, about three months ago, in a Teams meeting with a doctor and an OT that was set up by Alan’s employer, you were told Alan was on the road to recovery which may take up to 2 years and that he[doctor] expects Alan will be able to go back to work. You ended that by saying “On the whole I am feeling good”
Having found out a bit more about your case, I am now not sure what may have happened to make you think that you have to " face up to the fact that he will nevere recover." when only as recently as October 2024 you were more positive?
Has something happened since October to change your view from such a positive where Alan may have gone back to work in say 2 years to him not recovering at all?
I am only trying to help if I can, but in order to do so, I first need to fully understand what the problem is and what help is required.
Namaste|
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Hi @Sonia158 I’ve been thinking along the same lines as @ManjiB as I’ve been following you posts since the day you joined. Unless Alan has taken a severe turn for the worst i.e. another stroke, then from all that you’ve said in recent months, Alan is in fact still on track in his recovery.
You however, have just come out of hospital and, I dare say, still suffering the effects of pneumonia and COPD. I recon you were on some strong medications such as strong antibiotics, morphine/codeine. Maybe even still on them. Am I right? Certainly you would have had them in the hospital. Anyway, the down side to those type of medications is the negative effect they can have on your mood - irritability, agitation, or even depression. When you’re ill like that, you’re down in the dumps anyway; added to that you’ve got the negative effects of your medications bringing you down even further. And it will take a couple of weeks after you’ve come off them to feel you feel close to normal again.
You certainly must be feeling run down, I know I did when I had pneumonia and pleurisy 16yrs ago. You certainly have my sympathy 
Your immune system will certainly be feeling run down so you would probably benefit from taking multivitamin each day, vitamin D and C. And maybe don’t worry about chores so much, and what Alan won’t do and just concentrate on getting better. The house can certainly withstand just doing the basics for a couple of weeks
In the meantime, Alan is doing just fine, just because you can’t see it doesn’t mean that his brain is not busy making repairs and reconnecting. It’s just slow, and no amount of cajoling or badgering will speed any of that up unfortunately.
How is Alan doing with short term memory now? Does he still use lots of aftershave, still get headaches, still averse to answering the phone?
Can you pin point specific areas of improvement or progress he’s made over the past year.
I think we can all understand him not doing much of anything, I did a lot of doing nothing in my first year post stroke. The fatigue, the brain fog, the woozy spaciness in my head, cognition deficit to name but a few, are all what was doing it. Everything took effort and a great deal of mental fatigue, and that’s biggest issue post stroke. And it’s likely he can’t explain any of that to you yet. This is why we say recovery is marathon not race. Because it can take years rather than months depending on the severity.
It was many months before I could complete the simplest of tasks like washing a few dishes. It’s the whole mental procedure that floored me. Going into the kitchen, sorting the dishes in the sink, putting the soap in and filling the sink, wash an item, rinsing that item, putting it on the draining board and getting the next item. Just getting dressed in the morning took a great deal of mental effort, which I then had to sit down to recover from. Eating breakfast was a mental effort. There were so many things I could make an effort to start but could never complete.
By the end of the first year, yes, I could do a lot more than I could at the start, but still only at half the speed of my pre-stroke self. And things like multi-tasking and short term memory have really only improved in the past year or so. I’m 4yrs post stroke now.
40 Things A Stroke Survivor May Need
Was he every like this before his stroke?
Lorraine
Stroke Improvement Group
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Hi Lorraine - I think your note will help Sonia very much.
I would quickly add, as well as Sonia, does Alan have additional carers. I understand Sonia has carers for herself right now, but does Alan?
I think under the circumstances, Sonia should step back to help her recovery and for Alan to be helped by other carers.
It seems to me Sonia could benefit from some respite relief until she is able to resume her role as primary carer.
This is just my thinking and I think social services should be able to help out with the respite relief. I know also the children live far away and have already helped out whilst Sonia was in hospital, but perhaps they can provide some additonal help now?
It’s not good that Sonia is trying to care for Alan whilst exhausted - not good for her and not good for Alan.
That’s about all I can think of that might help right now.
Sonia - please do try and get additional help
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Thanks everyone. Yes Alan is still getting the banging headaches, from time to time he will bathe in aftershave. A lot of the time, I feel as if he is not moving forward and some days it even seems like he has gone backwards on his progress but saying that, yesterday he did remember that he had to get up early as he had an appointment, he couldnt remember what the appointment was for but at least that is something he remembered from the day before. This morning I received a call from Essex Wellbeing as I had been in hospital and I was asked loads of questions and fromn thos conversation she will get in touch with a carers association where I should be able to get respite. Saying that though as much as I feel that I need respite I am already starting to feel riddled with guilt knowing that I want time on my own.
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