Family member of stroke survivor emotional support

I posted a while back about my mum who had a bleed on the brain at the beginning of August and whilst in hospital had a stroke. My mum is now in a nursing home due to the severity of her needs. She is unable to speak and swallow, she has extremely limited movement and spends most of her time asleep. She has good days when she seems more alert than others but alot of the time she is very vacant and shows few signs of recognition of myself, my brother or my dad. She was such an active person who would do anything for her family. She loved to be out socialising with her friends and now she is unable to do anything. Luckily we are able to visit her each week but its heartbreaking seeing her like that. I was so close to mum  we would speak on the phone every day sometimes more than once. I know we are lucky that she is still alive but it hurts so much not being able to hear her speak or give her a hug. She was the one person that I would turn to when I was worried or upset and although I can speak to my dad i don't like to as I know he is just upset as me. I just wanted to speak to someone that might be in a similar situation as I just really want to be able to enjoy life a little more but just don't know how to do that at the moment. I just feel so sad without my mum. 

Sorry for the long rambling message. 

Hello Hayley, very sorry to hear that your Mum is still so poorly.  The current situation with Covid is a devastating barrier to being able to have the closeness that you would wish for, so difficult for you all.  I'm sure that someone on this site will have had a similar experience and be able to share with you, so keep a watch for a reply to your post.  

I hope that she is receiving good care, and she clearly needs a lot of rest and sleep at this time, so her body is responding and that is why she is sleeping so much.  Hopefully this will improve and you will begin to see signs of progress.  We will all be thinking of you and sending good wishes xxxx

Hello Hayley,

My mum had a pontine stroke 3weeks ago.I think this the the longest I have gone without speaking to my mum. We speak almost everyday. You are lucky to be with her. My mum lives in another country. I only rely on the information my dad and brother gives me.My mum is unable to speak ,swallow and no mobility at the moment. She is also sleeping a lot which I believe is a side effect from injury to the brain. I We are hoping she will be discharged to start rehabilitation next week.I really cannot imagine how she will cope depending on other people for her basic needs for now.I can totally relate to how you are feeling. I wish I can tell you how to cope in this situation but I cannot. I am also looking for ways and methods to get through my daily life without falling apart. My life has been on hold since Oct 24. That was the day I found out she had a stroke.

For now I am hanging on to my faith in God. That is all I can do. 
 

Take each day as it comes. Stay strong for your mum and for yourself.

Hi, thank your for your message. Sorry that you are unable to see your mum. That must be really difficult. 

I feel so many emotions on a daily basis, sadness over missing my mum, guilt over not being sad for short periods of time, guilt for not enjoying things that I know I should be enjoying, anger at how this has happened to my mum, anger over other people fussing over stupid unimportant things and general lack of motivation most of the time. 

It is good that you have your faith to keep you going. 

I guess I just need to know that other people feel or have felt that same way. 

I hope that your mum can make some good progress in rehabilitation. 

 

Hi, thanks for your message. Mum is receiving good care from what we can see during our visits. She is now having trouble with severe pain which appears to be due to neuralgia which she had before the stroke but now appears to be worse and a swollen hand possibly due to poor circulation. We were told that the chances of mum making progress is unlikely. It is heartbreaking to think that she will spend the rest of her life unable to do anything for herself and being uncomfortable or in pain alot of the time. I just don't know how to mentally process all of this as only hours before mum became ill I spoke to her on the phone and she seemed fine. 

Dear Hayley

Yes indeed, fine one minute then devasted the next. 
happened to me when i was 68.

Other ailments do seem to accompany a stroke, and maybe get worse whilst the body is too busy repairing stroke damage. i didnt notice the other bits for some months. Part of this seems to be that i was so determined to get over the stroke, that lesser things didnt really matter.

if mum is fighting her own corner then the coming months will not be so bad. In my case i was so pleased to, for instance, become able to speak, that the million other ailments were secondary. It was essential to look at what i could do and not what i could not. I did not expect anyone else to get me better, i knew it was all down to me. 
 

Just imagine, having speech back. Or any other function. Being able to feed myself, magic. For me the very pinnacle was getting out the hospital bed and walking. I treasure the memory of having my feet on that cold ward floor.
 

Then getting fantastic messages of help on this forum. 

as for you, Hayley, things are so difficult. Watching someone else suffer is far worse. As you say, how to get your head around that. My first advice is to make sure you keep fit yourself. Mum needs you fit, you need you fit. So smile lots and look after your self.

 

best wishes

colin


 


 


 


 

 

Hi Hayley,

You are not alone. I can totally understand you.

I feel so said when watching a movie that makes me laugh, I feel guilty when eating and remember that my mum is been fed through a tube at the moment. We need to remind ourselves that it is not our fault, there is nothing we could have done to stop it. I spent the 1st two weeks thinking of so many things, why didn't I notice anything different, why didn't I ask if she was feeling okay! We can't change it. Let's just gather the strength to get through it. 
what is your mums prognosis? 

Its reassuring to know that other people had similar thoughts to me. The drs said that they don't expect mum to make much progress unfortunately. She is being fed through a tube into her stomach which isn't likely to change. Some days she attempts to speak but nothing much ever happens. She doesn't receive any physio or speech therapy as she apparently has no potential for rehabilitation. 

Awww , I am so sorry to hear this about mum.Don't beat yourself too much about it. Mum has lived her life knowing you loved and cared for her. Continue to do so. We can't do much for her than be there for her.

If you need anyone to talk to,Do not hesitate to message me.
Love&light. 

 

Sorry to hear of your mum's stroke, I will try to find your original post but I think our circumstances are similar.

Please don't apologize for rambling it can help writing things down. In the early days and probably still now I was at a loss as to what I should be doing or even feeling. It will be 5 years in April since mum had her stroke I have written about it and updated on here. It's good to know you are not alone. These are difficult times especially when we cannot give our mum's a hug when that's your only means of communication. Take care. Janet.

Thank you for your message. I havnt been on here for a while as I felt that I was coping relatively well, however today is a down day. I miss my mum so much. I havnt seen her since December due to covid cases within her nursing home. We rely on calling the home each day and its just really difficult not being able to see her. Today I just feel so angry at the world and everything that has happened. My mum is the kindest person I know and has always done everything she could for others and now she is stuck not being able to do anything for herself. It just seems so cruel. 

Strange how these days creap up on us when we least expect them.

It's so hard not to see your mum and make sure things are as you know she would want them to be. I have had to make myself back off and let the carers do their bit. Mum isn't who she used to be and seems to be resigned to who she is now. I can't help but think she might be thinking like her old self. She can't be otherwise she wouldn't be so content when I face time her. It's almost 12 months since I actually sat with her. It's hard but we can be strong for them when we need to be. It's very hard to understand why these things happen to the best people. 

Take care, Janet