It’s both my parents now

[SprogTakesAQuarry]

And I just feel so fucking sad and angry. I had come to terms with my mum’s dementia. It sucks but honestly, I can find a way through it. I feel like I know how I can help.

But my dads a different story. I can see him falling apart, overwhelmed with worry that he can’t hold it together. Frustrated, depressed, emotional. It’s so hard to be around.

He doesn’t have a dx yet and I’m really scared that a dx will just destroy him. But then he is just beating himself up so much each day as every little thing he does he’s finding more difficult.

That’s it. Rant over.

Oh Sprog that truly is shit. Sending hugs.

I'm so sorry. That must be very tough to deal with.

Thank you so much @80sMum and @olderbutwiser .

Oh @Sprog that's awful. Is he on any antidepressants? Has he given POA for both health and finance?

@SiouxsieSiouxStiletto I think anti depressants are the next step. I just don’t think he will get out of the doctors without a memory clinic referral. He needs that referral tbh but it will just make him more depressed.

POA is so urgent right now. My parents are each others, and then my sister. However my sister has a chronic illness and the day to day stuff is all falling to me. I feel like I’m always fire fighting, always reactive so find it hard to prioritise the most important stuff like POA.

I feel for you, all my grandparents ended up with dementia and/or alzheimers. I am getting on now myself, so have been thinking about prevention strategies.
A lot is still unclear, is it inherited for example, but its getting very clear that life style factors are playing a part.

If your dad is still early stages, what interventions can you take?

Diet may have an impact on disease progression.

Tbh, he is probably extraordinarily stressed out as a result of your mum’s dx. (Logically). This will frequently cause memory and concentration problems in the elderly.

@Unabletomitigate I spend a lot of time thinking about how my old age will look. I also feel for my teenagers who see me devote so much time and energy to my parents. I don’t want this to be their future.

My mums dementia is called logepenic PPA. As far as I understand, it’s no hereditary. She had a serious head injury in her 40s and I think that may have had an impact. She doesn’t have the gene associated with Alzheimer’s. My parents both got tested in their 60s to see if they could participate in clinical trials. However, she wasn’t eligible cause she wasn’t genetically predisposed. She had serious illnesses as a child, lots of hospitalisation. A stressful life as an adult. She ended up retiring much earlier than she would have liked.

My dad also participated in screening for Alzheimer’s drug trials. He has the gene but other medication he takes excluded him from taking part.

Im expecting to get it. I’m ND. Have had huge periods of depression and stress. Awful lifestyle for many years.

But actually, I’m not so bothered. Im mid 40s. I know my life is going to be tough while my parents are still alive but I will relish those years between then and when my own health goes. I hope for 10 years. 15 would be great.

@NeunundneunzigHorseBallonz that is absolutely the case. He feels so much responsibility for my mum and at the time knows that he’s progressively losing the capacity to support her.

Hes hugely social and really feels the loss of their social world.

@SprogTakesAQuarry There is a very good chance that your mum was "driving" the social life too. Seems to be the way.

POA is so urgent right now. My parents are each others, and then my sister. However my sister has a chronic illness and the day to day stuff is all falling to me. I feel like I’m always fire fighting, always reactive so find it hard to prioritise the most important stuff like POA

If you can do one thing this week, please try to do this, if you haven't already. It will make things so much easier for you later

How are you getting on nowadays? Both my parents have dementia too. Its so awful.

@Infracat Struggling tbh. They got scammed last summer by a door step builder. I ended up paying this guy £2.5k for two days work and then just getting him out their house.

He returned last week, saying my parents owed him £550. My dad let him in 😮 - luckily, a carer was there and sent the guy packing, but my dad had his card out. Installed security cameras, been in touch with community police team but don’t know if I am going to report it. I’m not sure to what end? Instead, I’m just obsessively checking the cameras whenever I get motion notifications.

My mum is really deteriorating, she’s so anxious. I sometimes think maybe a home might be appropriate for her now. She would be bored stiff but maybe that would be better than the anxiety. But I don’t know if it even would get rid of the anxiety. And also, what then for my dad? He would love to be in supported living, but he really is past that point tbh.

I think I’ve talked them into live in care. Luckily they can afford it. They tried once before, but hated it and only lasted a fortnight. But the person wasn’t right.

I’m just broken tbh. Am basically a walking-talking breakdown. Can’t even see how I can get to the point of sorting live in care.

How are your parents? Are they at home together?

If they can afford lie in care, can they afford to go into a home together?

Yes, they could go into a home together but it doesn’t feel like the right move.

They are out and about every day, really involved in activity programme put on by local charity. Plus walks, shops, etc. My mum struggles with cooking, but would hate being completely away from her kitchen and garden. Being in their own home is so valuable to them, and propping them up cognitively. If my mum does need to go into a home, it would be the end of her really. I would expect a very steep decline. It may have to happen at some point, but not the right thing now.

With my dad, he’s early stages and you could spend a day with him and not realise he had a dementia dx.

If you can find live in care that might really help for a while. It's such a faff but if you get an ok agency and there are carers available it's a lifesaver. In my experience they did a lot of sitting around but just having someone in the house was so useful.

Live in is the only way really. They both feel so responsible for each other, but also aware they can’t support the other properly.

They found live in really intrusive before, but the guy was a bit much. Also I think there are ways we could rearrange the house to make live in work better for everyone.

My sister is moving forward with the sorting adjustments in the house, but now I’m kind of stuck thinking whether I should just start to talk to caring agencies now or wait til the house is set up.

I should probably move forward now really. My parents are finally, albeit reluctantly, on-board. Though they will def change their mind a million more times!

I really feel for you and empathise. We literally noticed my mum's first symptoms when we were all in the hospital at my dad's bedside when he was dying. I can't imagine having both parents affected at the same time though.

I also have a chronically ill sister and feel like the bulk is being left to me, but mum's diagnosis definitely made everyone start pulling their weight a little bit.

My only advice is do what you can when you can. You're already under a lot of stress and the last thing anyone wants is you making yourself unwell too. Diagnosis sounds scary on paper but we found with both my parents that it actually helped things a bit because the medication lessened or reversed some of the synptoms. It used to be hell living with my mums mixed dementia because of her moods but a tablet she was put on for her delusions actually improved her mood too and it's like living with the old her again, just more confused.