Dealing with my socially anxious 73 year old mum with serious post stroke dementure

Hi peeps.  This is my first post.

My 73 year old mum had a stroke about 5 weeks ago.  Her mobility and speech weren't affected, so she was discharged the next morning, but she's been left with a great deal of dementure.  She's lost decades of memories, thinks people are alive that aren't, and her brain seems to be filling in the gaps with hard to understand delusions.  My dad, who's 71 has become her carer overnight, and he's been thrown in at the deep end.  She was probably dealing with a fair amount of anxiety before this happened, which was untreated (as visiting the doctor was one of her anxieties).  This anxiety has now become uncontained and is taking charge of both of their lives.  She's been prescribed an SSRI to hopefully help, but it'll take a while to take effect, if it even does.  

She often thinks she's looking after our 9 year old daughter and has lost her, or today it was about looking after the dog - we haven't had a dog in the last 16 years.  For her, some memories that are very old, seem like they were 5 minutes ago, and for others her brain seems to just be pulling things out of thin air.  "The dog kept me up last night so i'm making up the sofa bed to sleep in there..."  She often thinks there's other people in the house, and that there's some event happening that she'll need to make a fuss about.  She's still "sharp" if that makes any sense, but living in a made up world, and is unfortunately very sure of herself.  She's convinced of things.  Often my dad has to facetime me becuase she won't beleive whatever she thinks, and my dad doesn't know how to deal with it.  He's a bit old school and wasn't the carer in the relationship before this all happened.

Neither of them have much of a support group, or have many friends.  They're fairly anti social in the grander scheme of things, and were there for each other.  But now that relationship has been thrown off kilter.  She doesn't really want to see his sisters who are trying to be there for them/him.  She doesn't like playing games, or have any hobbies - so finding what to occupy her with now is the biggest challenge.  She has no attention for TV or movies, or puzzles or games.  I managed to get her to colour in one of those grown-up colouring in books, but she seems to not be doing that much at the moment.

She's in constant "fret" mode.  Fretting about things that don't exsist, or haven't happened.  It's very much like having a young child and being a first time parent - though he doesn't really remember those challenges as she was the one who raised my brother and I while he worked to support us all.  My brother is like his father and works a lot.  I'm trying to be there for them, but they live an hour away and I have no experience with this either.  I have a 9 year old daughter, so I at least remember what it's like to be responisble for something with no instruction manual - the terror those first months are.  At least with a baby, you know it's going to get easier, because they'll grow up and out of this stage.  I assume with post stroke dementure it's not going to get much better, if at all.

They're not bad people, but they haven't held on to too many friends nor are very outgoing, and are living with the problems of a co-dependant relationship when one person becomes overly dependant on the other.  If it were the other way around she'd at least know how to take care of him in a mothering way...  He's defensive, and emotional - but with no experience of dealing with emotions, so finds it hard to talk, ask for help, or accept help.  If he's caring he's coddling, which rubs her the wrong way.  She doesn't always accept that he is who he is, and this may be when she's more upset with him - so she's calls him her cousin or brother.  She's teary at times, begging me to tell her where her husband is, and so's he...

They've seen a Neuro OT and have an appointment to see a memory nurse in about 10 days.  The OT has mainly been assessing her, and hasn't left us with much useful information bar making a whiteboard with peoples photos and names and where we lives etc. (she thinks that the 10 year old versions of my brother and I still exist, so looks for us, despite us being next to her).  I've done that.  Really now, I'm looking for suggestions for how to deal with a very anxious, heavily neurologically impacted, mother... and a father that's desparately trying to keep his head above water, but doesn't know how to even call for help.

Well done if you read all this - i'm not sure I would have.  I've contacted the local Stroke association co-ordinator, but she can't see them for another three weeks. (I also have no idea if she'll be able to help in anyway).

Thanks in advance, even if you've got no advice.


Dear Julian

This does not seem like a common stroke aftermath. Was she diagnosed with a transient stroke ? Or was it the full stroke and if so, which bit of her brain was damaged. You need the discharge letter that the hospital wrote to her GP.

My memory was damaged by a stroke. I lost about six months  leading up to stroke. I also was very slow to get my brain to function. And I got hallucinations (apparently this is rare). I am 72. BUT I am not perplexed at all by the memory loss. Indeed, I just laugh at it. I read my diary to see what happened in that period. Also, my whole thinking process has slowly improved over the past four years since stroke. 

Stress is an ideal way to encourage a second stroke. Mum has to calm down. I think she needs professional help.

A lot of what you have written is typical of dementia although she is rather young to have that level of dementia. I know dementia can occur earlier. But its more typical of someone perhaps 85+.

So perhaps your way forward is to determine just what happened in hospital.

Keep yourself clear minded so that you can give help when appropriate. And do give Dad a lot of support.

Besyt wishes


Hi julian

I tend to think of my Brain as a snow globe  that's just been shaken and everything has been displaced and is settling down. It takes a while, it sounds like your doing everything right by trying to get her remember or trying new things, but things have to be at her pace after all it's her brain that it's trying to repair its self and it is trying! All be it slowly, I can relate to your parents as me and my wife don't have any joint friends, she has hers and I don't have any, She goes out.... And I don't... I prefer the dogs company! That doesn't help me but thats the way I have lived my life, but here on this site am finding the ability to talk again. Time they say is a great healer....... In a few weeks you look back and see how much better things are, not great... Just better,

Deep breath keep paddling steve