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.