Need Advice

[pgpapergirl]

My 88 year old mother had a massive stroke back in September 2021. She was left with right side paralysis and unable to swallow or talk. She also has a different personality than before the stroke which I am assuming is some sort of dementia. Needless to say, she is on a feeding tube. She answers yes and no questions when she understands what you are talking about. She gets distracted quite easily and gets aggravated when you don't understand what she wants. I was at the nursing home yesterday where she resides and they had her sitting in a wheel chair in the doorway of her room so she could see down the hallways. I asked he if she would like to come back into her room to visit and she shook her head yes. When I did this, she got very upset and wanted back out in the hallway. I was there an hour and she paid little attention to my presents. We are going on 5 months post stoke and I was just wondering if anyone else has had this same experience and how to handle it. My anxiety is thru the roof over this whole situation. Definitely need some advice.

[moo196]

Morning, just to let you know that this group is much less busy than the headway section of health unlocked. You may get more responses from the group there 🙏

[pgpapergirl in reply to moo196]

Thank you

[peege]

Hi, I sincerely sympathise. My dear sister also had a massive stroke on 6th September '21, a bleed on the right side of her brain so she's got left sided paralysis. Whilst I don't know if stroke can bring on dementia I do know that it can cause changes in behaviour due to the area where the bleed was. When I'm explaining to others I liken it to the brain damage you get if you have a trauma to the head in an accident. I suppose the bigger the bleed the bigger the damage. It's a good thing that your mother was sitting in a wheelchair in the doorway watching passers by & the staff, my sis was in a 'nursing' home for all NovemberandDecember, a handful of the staff would take the trouble to pass the time of day when changing her but she was just left on the bed with no cognitive stimulation whatsoever. She couldn't even see out of the window. She'd been in West Suffolk Hospital having physio and speech therapy every day until they just decided there was nothing more they could do for her and insisted she go in to 24 hour care (which she didn't get, not one single shower or hair wash for £1250 per week).

Now she's home, she has 2 carers 3 times per day and on 3 days a week and a private physiotherapist so she's learning to use back muscles to sit up on her own and can pull herselfup to a wobbly stand with the good arm. Some movement is coming back in parts of her left leg. She can't do much without instruction though, her brain isn't working well enough (yet 🤞). Lost all her initiative, determination, grit & creativity.

I know my sis gets words jumbled up, she might say yes when she means no or something's hot when it's cold. I've beeb teaching her family to ask open questions to help get her talking.

It really is a very long process, other parts of the brain can take over from the damaged part (which I believe cannot recover) but it needs help in the form of therapy.

Because your mother is 88 the prognosis and recovery may be different of course.

It is so very distressing to be with a loved one who was fine one minute and then not, it's a massive loss to us too. My sister Jennifer was so full of life, never stopped, fit, funny, creative and quite well.

I can only suggest that you read up about stroke as much as you can so you get some understanding & know better what questions to ask the medics.

I'm so sorry about you mum, it is heartbreaking. Feel free to send me a private message & I'll try to help

[pgpapergirl in reply to peege]

Thank you so very much. Mum has improved somewhat in her 6 mos post stroke. Still in some kind of dementia state. Doesn't know us as her daughters but does acknowledge us as someone who comes to visit often. Its hard but we are dealing with it. Thanks for all the information you have provided. I truly appreciate it.