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Not sure what's next (possible dementia) - Carers UK Forum

Not sure what's next (possible dementia)

A place for those 18-35 to chat about all things caring.
I'm 33, I've lived with my grandmother for the last 16 years, not providing any 'care' per se, just being around.
My grandmother has never had many friends, she has an email penpal, and see's her daughter weekly. She doesn't like to engage neighbours or services (like if a plumber was needed). She's had poor hearing for a long time. During lockdown she became more isolated, didn't use the bus or go into town on her weekend trip, my aunt would visit on weekends but more briefly. They do call every day for an hour or so and message constantly on Facebook during the day.

During the pandemic I started working from home. I also met someone who lives 2 hours away, so on weekends I go to visit her, as she can't drive and trains are very costly.

My grandmother told us she fell over in the woods during the pandemic, she later added on that she think she baned her head, and she was unconcious (didn't mention that part at first). She then complained of headaches (about 6 months later), she kept blaming it on the fall. Anyway we go to the GP, thyroid and blood sugar a bit low, new medication. Blood pressure when I took it was on the high side. That was in November, and prior to that she was becoming very aggreived that I would leave on the weekends, and especially if I went for a holiday. She said she thought she was going to die while I was away but just described it 'as a funny turn' which doesn't help from a diagnostic point of view.

After xmas I went on holiday, after I returned (2 weeks away as I caught covid and didn't want to spread it), she said how ill she was, we were going to book a GP appointment, when she then started acting like she had a heart attack, I called 999 and due to my answers they sent a community responder, and then a paramedic within 2 minnutes. We sat in A&E, she was unresponsive for a long period, but then came around and acted as normal. X-ray, CT scan, no infections, no brain injury, slight low sodium and extremely high blood pressure (200/100). They wanted her to stay overnight despite her objections. Came out the next day, then the following day as her daughter visited she had the same condition, shortness of breath, rolling around in bed grabbing her head... they called a paramedic though it was slow this time, again only thing they can see is the high blood pressure, we had new medication, BP seems ok since then (I measure it during the day).

The problem remains that when I go away on weekends she starts clutching her head and crying that she'll be alone. She won't give any reason why she can't be left alone. She can cook, do laundry, use her laptop etc. She doesn't explain or give any explanation apart from she can't be left alone! She then starts the short breathing again. Classic signs of panic attack. We're going to the GP next week, I asked on the phone if they can do a dementia screener, also the discharge Dr. mentioned a sedative might help. I'm not really sure how I can continue living here like this. She even said it might be best if I move out! Although I'm sure she'd regret it if I did, as I do odd things around the house, and if I left she'd be even more isolated.

I've suggested things like elderly befriender, there's a charity that does day trips, she makes excuses like she can't travel, or walk around much, despite these being very accessible services.

I asked how she'd feel if we had a carer come in, or an overnight carer, she just ignores me and doesn't respond... I asked if she wanted my cousin to stay instead (he's NEET and sits on his computer all day-perfect), but she says she doesn't want him here.

I'm about to return to working in the office, which apparently is ok, it's just if I leave overnight that's such a concern. She doesn't give any rational reasons or articulate.

Another thing: when the occupational health called her after she was discharged, she told them everything was fine, and she has a carer (me), they hung up before I could get to the phone. Not sure what that was about or if they wanted to arrange a care needs assessment...

Going to try and get a hearing appointment when I'm free to take her, I don't think she'd do one by herself. Also a few years ago when she went for an eye exam by herself she paniced that she couldn't read the letters and my Aunt thinks she left half way.

Anyone else had this kind of experience, what could be next steps separate from the GP? (Because I don't have much faith in them tbh).
How old is she?

Frankly, my advice to you is to leave asap, or you are going to be trapped in this situation, with no life of your own.
I know that doesn't sound very nice, but you ARE already her carer, because she is having a significant effect on your life.
You should be free to follow your heart, enjoy yourself, not made to feel guilty about this.
bowlingbun wrote:
Thu Jan 20, 2022 8:11 pm
How old is she?

She's 84.

I was thinking of moving in the next few years, I need to put in a transfer at work and look at houses where my girlfriend lives (prices down here are unaffordable). I don't have a problem with going away, it's like with children you need to let them cry it out or they'll understand that nothing is going to change it. My aunt makes it worse by trying to guilt me, though I'm autistic so I can logically see what's happening and doesn't affect me.

She was only like this in the last year, prior to that I would have my girlfriend visit (grandmother would complain), if I went away, she didn't have anything to comment about it.

It's pretty likely to be dementia right? She has symptoms of depression like not enjoying her jigsaw/hobbies, sleeping a lot. My aunt doesn't seem to want to admit any of that, she thinks the Dr next week will solve everything (which last time we saw the GP she put on a smile and didn't mention any problems), but I know next weekend I'm away for 3 nights and she'll make a scene again.

I guess if I move out then it's for my aunt to deal with. I never mentioned to her that I was looking at houses and planning to move, feel like if I did then it'd make things worse.
Putting it bluntly she's scared.

She's had all these health issues recently that have reminded her that she has more years behind her than ahead of her. And to cap it all, the one person who's been around fairly constantly is now having a life. And when she's on her own all she has to think about is her health - and the scares.

Hence the panic attacks.

It's not going to be easy but you probably need to have a talk with her about your plans for the future and how she needs to prepare for that, by taking the plunge and actually meeting other people. The hearing test is probably the best thing you can do because that's part of the problem. She can't hear what people are saying - with you, she can probably hear a bit and lipread the rest, because you've been around so much.
Sounds similar situation to me and my grandma