My husband Rob, had his ischemic stroke on 24th June and well, it’s been a roller coaster ride neither of us ever thought would happen.
He also has lung cancer and it was 2 hours after his first immunotherapy treatment that his stroke kicked in. Obviously I can’t say it was the treatment, but I don’t believe in coincidences!
Anyway, long story short, he’s just stopped wanting to eat. I think one or more of his regime of tablets is an appetite suppressant, which really isn’t great. He’s lost 15kgs in the last 7 weeks or so and even though some days he will drink 1 Complan, he still doesn’t want any food.
@Susie147
It sounds dreadful what you are both having to face and cope with. Everyone forgets about the partner and extended families and how they are also affected by stroke. I cant even think of word of comfort for you both, because it must be dreadful being in your shoes. I can understand why your husband feels he doesn’t want to eat but I will not print my thought son this page as the hater would be on their high horse. I suffered a stroke but I appear to be like no other person on these pages and I do not mean that in a bad way. I just have a completely different outlook on the process. Doesn’t mean I am right and it doesn’t mean everyone else is right. I value other people opinion and thoughts. I struggle every day but I am not dealing with the horrendous issues of you and your husband. My heart goes out to you both.
Welcome to the community, I’m sorry to hear about your husbands stroke and his lung cancer too, it sounds like you’re both going through a really difficult time.
With regards to appetite we do hear that people’s taste and smell are affected after a stroke so this may be affecting his appetite if things have changed in that area. We have information about this on our website which you may find helpful to have a read of. I’m sure that some more of our members will be along shortly to offer their experiences with this too.
I hope you’ll find the community useful for your husbands recovery. If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Thank you for your replies. I’ve called 111 and after answering loads of questions, all they did was pass me off to his GP who is going to ‘telephone call’ us later.
Well a 'phone call isn’t going to show how much weight he has lost, how much his Warthins tumour has grown, or how he sleeps most of the time and looks confused when he does wake up.
A prescription for his oedema in his lower legs won’t be ready until next week sometime, even though they were prescribed Monday just gone and I’m sitting here looking at these tree stumps on the end of his knees.
I’m literally watching this amazing man, who taught A Level Chemistry and Physics and marked exam papers on-line, slowly disappear before my eyes and no-one seems that bothered except for me. I’m banging my head against a wall.
@Susie147 welcome to the community. You & your husband are going through a real tough time at the moment and my heart goes out to you.
I completely lost my appetite after my stroke & lost over 4 stone in weight. I do eat but because I know I have to & I also take 3 x ensure supplement drinks a day. I wonder if your husbands appetite has been affected by his cancer & his stroke. Is there anything ge might enjoy eating at all? His favourite food perhaps.
If you can get him to eat anything you could try fortifying it. Add marvel milk powder to a cuppa for example. Would he manage a smoothie? You could add ice cream to it.
Try speaking to a pharmacist about his.meds & see if they can swap one for a non appetite suppressant. They’re often more clued up on meds than a gp.
Try feeding a little bit and often. And don’t worry about what it is, whether it is healthy or otherwise just as long as he eats it.
Perhaps telling him if he doesn’t eat, he’ll end up drip fed might spur him on a bit.
Thank you Ann for your reply.
Well the doctor has now prescribed another pill to stop the Diclofenac from damaging his stomach lining and a few more to help him out.
Trouble is he sleeps so much it’s hard to keep him awake long enough to drink anything. He just doesn’t want any food in whatever consistancy.
Of course, as his wife, I nag him that he will end up in hospital if he doesn’t eat/drink his food, but he only managed 1/2 of a Complan drink today then felt sick.
Getting his new pills tomorrow and will have to wait and see what happens.
Thank you.
Then I feel there might be some information missing. It seems you and your husband don’t have much post-stroke care support which I find surprising.
Before your husband was discharged was his care plan and care needs not discussed with you?
I wonder if you should not have access to :
Stroke consultant
District/community nurse
OT/PT/ Other community support
Care workers
Social Services
Dietician
Do you not have a dietician who is part of the care support team who can explain why your husband might have lost his appetite and what can be done about it?
These are just some things that come to mind.
If you don’t have access to some sort of support team you might want to ring the Stroke Association Help Line to see what sort of help you can get.
Stroke Support Helpline:[0303 3033 100] (tel:+443033033100)
There is no reason why you should be struggling on your own.
Hi, thanks for your reply.
I am his care plan - just me. I don’t have access to any of the people you mentioned. He’s got a lot of different illnesses we’re dealing with and I’m hoping the new pills will help.
I’m just watching him slip away slowly from the brilliant, funny and sarcastic man I knew and can do nothing about it except hope the pills kick in soon.
He has his lucid moments, but they are getting shorter and further apart.
Thank you for your best wishes, it helps to not feel alone.
You should absolutely not be having to do this on your own.
There is something not right about this. There appears to have been a massive oversight somewhere.
As things stand, I would seek help from your GP and social services.
My apologies if you mentioned your husband’s age and I have missed it, but Age UK can also offer help.
You don’t mention it, so I don’t know where family and friends fit in here.
Like I said I am so sorry you are doing this on your own. It is not fair on you and not fair on your husband.
I am hoping there are other forum members on here who might be able to chip in with some advice based on their experiences.
I wish you and you husband all the best.
Sending you love and hugs.
In fairness to the rehab place he stayed at, the only problem he had there was chronic constipation. He was able to walk around a little and apart from finding out he had Diverticulitis when we were at the hospital, he wasn’t too bad, but he wasn’t eating a lot, just a couple of bites then he would shove the plate away.
It was only when he came home that he started going off food after a week or so. The meals were small and some of his favourites, but he just didn’t feel like eating.
He’s 69 and has no family to speak of as he was an only child, so tag, I’m it!
I’ll be calling his GP on Monday as his abdomen looks all swollen and he’s in constant pain with it.
Thank you all for your advice - his GP is going to hate me!
I really hope you can get some help from the GP. As @ManjiB says you really shouldn’t be doing this alone without some medical support of some sort. As he also has cancer have you thought of trying somewhere like McMillan has we found them to be excellent when my dad had cancer. I hope these tablets do help your husband and he starts to get a bit of an appetite back soon. I know when my dad had cancer he really struggled to eat and also lost a lot of weight. In the end we just let him eat what he wanted when he wanted as trying to force it on him I didn’t help at all. Please also speak to the GP about getting some support for you. They should provide support for carers.
Hey Susie - My Mum suffers a lot from bloating - swollen tummy is a classic sign and red alert for us. What we do is get her to lie on her sides in bed and then do some light limb movements. Raise arm as far as it will go and “feel” the stretch. Same with legs. Also with her lying on her back, take both knees towards tummy. Do up to 10 reps.
For some reason, for Mum lying on her left side works best, but the right side sometimes works too.
Please get all the help you can for your husband and yourself. It is available and your GP has to start earning their dollars
Also, with bloating if your husband is drinking by mouth - make some peppermint tea.
I really hope thinks settle and both you and your husband can get some good quality rest.
Do not hesitate to contact GP or 111 or whoever and do not suffer and soldier on.
I’m just back from the local hospital after my husband had an ‘explosive episode’ in the toilet department. Turns out the bloating etc was from an internal bleed. His blood pressure was extremely low and they are keeping him in at the moment.
I had no idea of the help that, apparently, is available out there. No one, not the re-hab for stroke victims or his GP mentioned any of this to me.
It’s been tough on my own, but now I know that I can stop being strong and battling through this alone. Thank you all so much for your advice and support. It’s been a real help to me.
Hi Susie - you have been very unlucky as somehow you seem to have fallen through the crack. I am amazed no one had advised you about the help. Perhaps it might be something to do with where you live - there are huge differences in care and help across the country. Normally the Stroke Association is informed by the hospital e.g. your husband’s stroke consultant or the support team.
Anyway, the good news is your husband is now in hospital and cause of his bloating has been identified which will be a massive relief to him and to you.
The help is there for you, please make sure you get it.
If you need anything else, we re here for you and your husband.
Get yourself some rest - you deserve it and almost certainly need it after all you have been through.
Thanks to everyone that responded.
Unfortunately my husband had a massive heart attack early this morning and despite the hospitals efforts, he is now unconcious and non responsive and will most likely pass away at some point today.
Thanks everyone.
You probably won’t see this post for sometime Susie147. I have been away and only just catching up. My thoughts are with you as I’m sure are all of us. We are here for you when ever you need us. My sincerest wishes are that you have someone with you at this awful time. I send comfort and strength for you. Norma
Oh so sorry to read this news @Susie147. My thoughts are with you and hope you find the strength you need to get through the next few hours / days / weeks.
Susie - I am so sorry this has happened. We are all thinking of you.
Stay strong and we will always be here for you whenever you feel the need to talk.
Thank you all for your sympathies. Much appreciated. I’ve gone through DABDA (denial, anger, bargaining, depression and acceptance) and am now working out what happens next. Different banks for his savings, HMRC, DWP, already contacted a company regarding his funeral and this will help me take my mind away from the overwhelming sadness I feel after 30 yrs of madness with my old man. Thank you all.
