I’m frightened for both of us

My husband is 85 and has just had a stroke. He is in the Acute Stroke Unit since, and will probably be there for several weeks or longer.
I’m determined he will come back home, but am concerned because I’m 80, arthritic and a fair bit shorter than he is. I’m also worried about him because he is blind, but he is / was independent enough to go for a daily walk and bus ride, meet his friends and natter in the pub, and then come home. 2 hours later. I might not be enough company or efficient care giver.


So sorry you have had to join us. If he comes home you will need support or you will burn out. Would his friends come to your house? That would be company for your husband and would give you a break. Come back when you have questions or if you need to rant or weep.


So sorry to hear of your husband’s stroke but welcome to this forum. We are a merry band of stroke survivors who have all suffered different types of strokes and are all different ages. We are always here to offer advice and information. Please feel free to ask questions or have a rant or a good moan if you feel the need. The forum is made up of stroke survivors and their carers, so there is always someone who can relate to your situation.

Please take good care of yourself as the road to recovery following a stroke is long and tough. Hopefully you have family and friends who will step in and help out when you need it.

I look forward to hearing from you when you feel ready to reach out.
Regards Sue


Hello @Shelbo

I’m sorry you had cause to join us, but you have landed l in the best place to talk to people who understand, are empathetic, and can offer advice .

I’ll certainly second the comments about needing focus for yourself because of the challenge of being a carer. Reach out for help wherever you can find it and take it.

We’ve been putting together the source of stuff we habitually say to new forum members. Just tap the blue text


Hi Shelbo. Your husband should leave hospital with a care package. We were offered one which was people coming in 4 times a day but we have been lucky as my husband although he’s 86 is still fairly fit and has been able to cope. I had a stroke 10 months ago and as well as the care package came home with a wheelchair, 2 pieces of equipment where I stood up and my husband pulled me around although you may find your husband is too heavy for you to push. I also had grab rails fitted to the shower and another rail to help me off the toilet plus a grab rail by the back door to help me get up the step. Make sure you ask for everything you need. I found there was lots of help out there including home physiotherapy which has been amazing. Good luck


@Shelbo welcome to the forum. Sorry to hear of your husbands stroke.

Before he comes home he should have a care assessment done. Make sure you are honest with them about your ability to care for him otherwise they might just discharge him into your care. I’m sure you’ll be enough company for him but maybe his friends could pop by too. Most people find meeting with people in the early stages very tiring so don’t be surprised if it makes him very tired or he just doesn’t want to see them all.

Looking after yourself is important too.

Wishing you & your husband all the very best.

Ann x


Hi @Shelbo welcome to the forum and I’m so sorry to hear your husband has had a stroke. All the above is good advice and information, so I won’t bore you by repeating.

Your mind must be all over the place at the moment, I’m sure this is a shock for you. But he’s in a good place, so you need to concentrate on yourself and maintaining your own health and wellbeing. There’s no need to concern yourself with company for your husband, he’s not going to need much for a while. But don’t isolate yourself in the process. Be sure to get time yourself, get out and about with friends and family, a break away to chill and regroup.

During the first 6mths post stroke it’s all about the brain healing and recovering abilities. It’s very draining even despite not doing anything physically. Your husband will sleep a lot and even when awake he’ll likely just sit quietly…between short bouts of rehabilitation exercises, and will likely go on this way for a few months. So yes, he’ll need a certain amount of social stimulation but only in small doses…even an hour may be too much. So don’t worry at all about not being enough company!

And can I suggest you don’t mollycoddle and treat him like an invalid. By all means stand by to help when he asks or really needs it, but give him enough time to do things for himself before you step in to help. You’ve lived with blind so I have no doubt you will manage far better you think :smile:

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Thank you everyone,
I’ve met stroke victims before, but some people seem to have no lasting effects - two of my husband’s companions in the hyper acute 48 hour ward went home, walking and talking.
I’m trying to stop feeling sorry for both of us, but I guess the most important thing is to not upset him, and to give him good reason to get better. His being blind isn’t (to me) a problem - we’ve had 41 years of it together and he knows he’s got to be able to live independently in case I depart this world. This has just thrown me for six.


@Shelbo it’s a lot to take in so it is no wonder it has knocked you for 6. Take some time whilst he’s in hospital to digest & work through what has happened. It doesn’t just affect the person who had the stroke it is life changing for their loved ones too.

Sounds like you’ve dealt with plenty of hurdles in life so i’m sure you’ll get through this too.

Best wishes

Ann xx


I am so sorry you have reason to be here but so glad you found this group. It has been a godsend to me, for information, for empathy, for ideas about ways around things, for comraderie.

Early days are different from latter days. I would also warn against burnout for you. It seems somehow selfish to take time for yourself when someone you love needs you, but I assure you it is not. The loved one will feel grateful that you haven’t saddled them with the guilt of ruining your life just to take care of them. (i hope you see the wrong ideas we get in our heads about what we SHOULD be doing or thinking). I would warn about emotional changes you may notice, both in your husband from this traumatic event, and in yourself, because as mentioned before, this has happened to you both. I had trouble maintaining or controlling my mood swings for quite some time. My personality has somewhat changed and I am finally accepting the good in that, and working on fixing what isn’t.

I believe you will be a fine caretaker, because you have the most important trait which is love. Please do not be afraid to accept or ask for any assistance you need from whomever you can get it from… NHS, stroke team, family, friends, neighbors, good samaritans… That has to be the hardest lesson and I am still terrible at it. I think Simon may have shared the carer’s Zoom meeting with you. I highly recommend. Prayers and best wishes for you both!


Hello Shelbo, I’m sorry to hear about your husband and I totally understand how frightened you are feeling. I am a newbie on this forum and was filled with that same fear for when my husband is discharged from hospital. My brain could not think straight about any single thing I needed to do or ask. The members here have really helped to calm my thinking and panic, and there is some amazing help and advice on the site and from the forum members.
I had to take a deep breath and slow down my thoughts because my brain was in panic mode and I could not see or think straight.
The help I have had in the short time I have been a member here has been invaluable in settling my thought process down, knowing there are people who will help when asked any questions.
Take care and best wishes
Josie x


Hi there!

You mentioned that your personality changed?

Do you believe that negative traits about yourself before your stroke were amplified afterwards? This was very much the case with my mother.

My mother became a very different person after her stroke: terrible apathy, OCD over temperature, pacing at night, and sometimes during the day…bickering over nothing, accusing my father often of wanting to leave her and put her in a care home. We did everything to help her, but, in the end, she just got worse and worse mentally, even though she recovered extremely well on a physical level (walking, arm usage, etc.). Sadly, she started to become very irrational in the last year of her life (not wanting to wash her hair, brush her teeth, refusing to take her contact lenses out at night, etc.).

Strokes are complex and affect everyone differently, though some things affect stroke patients across the board. My father and I really felt helpless with my mother, even though we did everything under the sun to help her. We took care of her 24/7 for almost 2 years. We thought that her amazing physical recovery would lead to an amazing mental and emotional recovery. How wrong we were! Also, her speech and memory were almost perfect. It’s just a shame how her emotional mind was forever gone. She was checked for vascular dementia, etc, but they said just it was just from the stroke, and possible PTSD. Oh well…that’s life.

It’s great that you’re accepting the new you, instead of fighting against it.

Best of luck in your recovery. Please take care.


The hardest of all for me has been knowing who I am now. I have always been filled with love for others, very thoughtful of others, and intentional with helping others, very frugal so I could give to others and take care of family. At first I just wanted to be done with here, but my sister begged me to fight and i could not let her down, then I was so concerned about helping my daughters a bit longer, I fought harder. When I came home, I realized I was little help and much burden. That depressed me tremendously. Apathy was a way to deal with that. Then I became impulsive and selfish, buying things for the house thinking I will be stuck here forever and need things I like to look at. Then it was clothes, so I would look nice for all the places I don’t go to anymore. I couldn’t control it. I went overboard spending money at Christmas for my family and myself. The myself was definitely overboard. None of this was important and it really hasn’t helped me to feel better, except the gifts for family. It just isn’t who I was. Medication for anxiety and depression has been extremely helpful. (Yes, PTSD symptoms). As far as self care…I am not so good at that…I forget to take a bath, brush my teeth, etc… Still establishing habits. Work and dating would have reminded me of that, but I am not doing those things. I have to write lists to get anything done. I don’t remember to do anything that is not on them. I can’t say why your mom changed so much, or in the way that she did. I can’t even tell you why I became so impulsive, when I have always been cautious. It is good that I put some care into myself, even if that means spending some money I shouldn’t, and I am learning to say NO to others, something I have always been bad at. I am working on watching that impulsiveness, and ensuring when I become angry or melancholy that I have reason to be angry, or have the proper perspective. It is hard. I am so sorry your mom did not make it through that struggle, but glad she does not have to struggle through that anymore. I believe there is a better place and we will meet again, healed and full of love and joy to share.


It’s not for nothing I think the right name for us all is stroke warrior.
You and family clearly have struggles that you’re still fighting, we all have struggles and we all must fight everyday to improve our lot.

Stay strong you’ve come a long way :slight_smile:

I wonder what’s the most unjustifiable thing looking back that you bought?
Does it cause a smile now?

Have a great day, week, quarter, year,

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I bought a beautiful bathing suit online. Unjustifiable as I read the measurements before purchasing, hoping it would stretch a bit…It would work fine for a topless beach! We don’t have those here, but might as well be bottomless suits seem to be the thing here these days.


Your struggles do remind of my mother’s in some way. So sorry that you have to go through all of this craziness.

My mother just simply gave up over time, and then her mind really started to go. Not sure what happened. For the first 4 or 5 or so months after she came home from hospital and did rehab (learned to walk well, etc.), her apathy and attention span were not as bad. My dad agrees with me 100%. After that, something changed: her apathy, rational mind and attention span all started to plummet. No medication helped. And the weirdest part was, was that she continued to improve so well physically with little efforts, that she was able to walk like a normal person; in fact she could walk as well as any person in their early 70s. Her affected arm and hand came back at the one-year mark or so, and it was about 85% recovered (just some weakness in her fingers, etc.). She could do most things with it, unless it required a lot of strength. All very strange…

I don’t know if I told you all this, but mother ended up having two massive seizures almost 2 years after her stroke. We were never told that her brain bleed was the cause; in fact, they never gave us a definitive reason for her seizures. They are what put her in the hospital, which then led to her getting sepsis and dying. If you google, you will see that seizures can happen years after a stroke, particularly in people with brain bleeds (seizures can come from scar tissue in the brain). I say all of this, because my dad and I are now wondering if my mother had started to have silent seizures, or some type of non-apparent seizure, when her mental state deteriorated 5 months after coming home. We’re just curious. She did have a lot of blank stares, short-confusion spells, etc. It’s hard to say, but it is a real possibility.

@Deann: I wish you a lot of luck as you continue to live with the after-effects of your stroke.

Please take care of yourself. Stay strong. Peace.


Lol !
Blood pressure is already something I have to regulate…

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I also had hemorragic stroke, then sepsis and endocarditis which ‘shot’ embolisms of bacterial clots all throughout my body. I had no idea I had had the hemorage, and it had repaired itself before I ever went to hospital, so likely months before. I don’t know when the embolisms happened, either. All I remember is calling for a Dr. because my boss thought I should when I called into work after already missing a day and sleeping for three. Went to hospital because I was mad I could not get a dr. to see me right this minute. LOL, Then was going to drive. I never thought stroke. I thought, maybe heart attack coming on, or that nothing was wrong at all, and I was making a big, expensive deal over nothing.

The reason for sharing that is to show many times we can not make sense or know what is causing our issue, how to stop or change it, or that we even have an issue at all. One thing I feel fairly certain about it that your mom did not choose to be apathetic, proven even more so by the fact that she was doing so well at first. She may not have had any clue at all that she was. Or her worry over the temperature, anxious pacing. Wednesday, I was angry for people moving around and making a lot of noise…at a FOOTBALL game! Now who is ridiculous? Thankfully, I did not make a spectacle, but still, the anger was hard to put down until the game was done.


Yes, I understand very well. You were not real self-aware – just of what others were doing. We noticed that with my mother, as she was not “self-aware” at all, especially at 5 months after coming home. No, it wasn’t her fault. She was aware of other people’s behaviors but not her own. I find it hard to explain, honestly. It all just baffles me. Strokes are complicated and complex – still not well-understood like they should be, considering how common they are. People always neglect the emotional and mental aspects of stroke, and focus all on walking, hand/arm abilities, speech and memory.

At any rate, I just get very upset, because the stroke essentially killed me dear mother. When I think about things in hindsight, things were worse than I even imagined. I am still trying to process it all, and talking to you all makes me feel closer to my mother.

Do you think my mother being a very anxious person before the stroke made things worse for her afterwards?

Also, do anyone of you on here know of anyone who recovered very well physically from a stroke (almost like 8 or 9/10, but left very mentally ill afterwards?

Many of you have a lot physical deficits that my mother overcame within 6-12 months, but you are all way more sane than she ever was. She could have never got on a website and typed messages, even though she was cognitively able. My dad and I were fooled by her amazing physical recovery. Her stroke was 15/17 on the stroke severity scale. She was placed at “moderate-severe”. Maybe that is why she recovered so well physically, as her stroke was still under 20 on the scale. Who knows really?

Have a great weekend. Take care.


Depending on which part(s) of her brain were affected can make a huge difference in how one behaves. Because mine were all over, it is a bit different than someone who has a stroke affecting one area. My vision issue is from Occipital and Opthalmic regions, my frontal lobe was affected and caused quite a bit of teariness, anger, and I was a quiet person but am now very talkative. I used to be patient, now am impulsive and easily annoyed. I am not always aware of it, but thankfully can catch it most of the time, or someone will tell me I am being rude. Somewhere on my right side affected the left side harshly, and somewhere on the left affected the right but only slightly. My executive functions are really low in comparison to before but are very slowly coming b
ack from old memory and habits. I used to be very organized, but now I struggle.

So I wonder if your mom had a frontal lobe injury? I just don’t know, but it seems like she tried her best to get better. I am so sorry she couldn’t stay here with you longer, but so glad she no longer has to struggle with this.