Stupid things people say

[whataboutbob]

There are a few things I've had said to me regarding my father, which really irritate the hell out of me. " is your Dad better now?" Eh,no as I said he's got Alzheimers, look it up, it doesn't t get better it just gets worse. Also " so, have you sorted your Dad out?". No I haven't and FYI, you never " sort out" someone with dementia,you just deal with their problems usually 3 at a time and if you are very lucky you get a couple of days off before another 3 pop out at you. Those who have experience of dementia never ask that kind of question. neither do those with some imagination and empathy.
OK I realise I am being grumpy, and maybe what pisses me off too is they are part of that charmed circle, of persons whose parents are not dependent, and of persons who basically have not experienced misfortune. I ve heard people with cancer say similar things about people asking them dumb questions, and thought they were being a bit harsh, hey it s not your friend' s fault she doesn't have cancer and you do. But now I can see where they are coming from.

[Needmoresleep]

Rant away! Especially if it helps.

DD was a very poorly failing to thrive baby who was tested for all sorts of really nasty things. I once almost throttled a playgroup mum who thoughtlessly suggested I try cranial osteopathy. If I had had an ounce of spare energy I might have been able to consider it but I was barely holding it together. I did not say anything but she saw the manic look in my eye.

More seriously your dad wont get better but his, and your, situation can. How are things going?

[Theas18]

Have a virtual cuppa and cake from me!

I can so identify with the problems coming in groups. When we are going through a good phase (as now) it easier to cope with the "hope he's better" with a cheery " well he's sort of stable at least" ... But otherwise it is hard.

(we are very lucky at the moment as he's finally, after about 6 months "got over" his palliative radiotherapy. His cancer is stable and his dementia has actually got a bit better after a huge deterioration in the weeks/months when he was, in retrospect frankly malnourished as well as suffering post treatment . The reason I say this is that whilst dementia is, over the longer term inexorably downhill - if there is another reason eg illness /social changes etc that set it off, then you have possibility of improvement too)

My "problem" is the "charmed circle" of peers too - but that's my parents fault lol. I am nearly 20yrs younger that I should be when dealing with all this. My parents had their kids in their 40s!

[whataboutbob]

Thanks guys for your kind words. Actually my package is not just my dad, as regular visitors to the board know, it s also my brother who has had mental illness all his adult life and never left home. Not least due to Dad's opposition he never got the psychiatric help he needed. In a poignant irony, D ad is so far gone now he can t really understand what s going on and so it s been possible to get psychiatric input. I have had to push push push. there have been some lows chieflY a horrendous psychiatrist who just chucked a prescription for anti depressants at him before pushing him out the door with no follow up plan ( someone who has auditory hallucinations, had not left the house in a year, and was incapable of self care with a proven record of not taking meds! ). Anyway I kept pushing and he now has daily home visits and is on the right meds ( apparently, because he s getting better). Also I got dad s rental flat all sorted over the summer and it s now being let again ( it was pretty grim because he d neglected doing the necessary work on it over several years).
I m off on a little break next week, no kids just me visiting my lovely maternal uncle and his wife in their lovely house.
Take care everyone, we need to remember ourselves too.

[Needmoresleep]

Well done.

Your situation has always sounded really complex. It will inevitably be two steps forward and one step back but it sounds as if you are making steady progress. Though not good in that it means your father is deteriorating it sounds as if he is now stepping back from decisions around your brother. Which means that you still have two major problems to solve, in obtaining suitable care packages for two adults with complex needs. But as separate problems, solutions should be easier to identify and achieve.

For your dad its the standard EMI options, and getting SS to offer them and him to accept them. Presumably for your brother, given he has never lived independently, the ideal will be a move to some form of sheltered or supported accommodation where he gets to socialise more, there are prompts for his meds and support for improving his capacity for independent living.

It sounds exhausting even thinking about all the meetings, phone calls, pleading and organising this is going to take. However there can be a time and place where both are living stable and contented lives and you can visit as a daughter or sister, without this huge burden of responsibility.

Enjoy your week off.

[desertgirl]

whataboutbob; what about you? apart from your little break, do you have some support around you (OH? friends?) sounds a lot for you to have been dealing with and as you say at least with your dad it won't get better (fingers crossed on the brother side). Take care of yourself - you have my admiration

[CMOTDibbler]

I share your pain. I get 'well, now they have carers you'll be ok' and 'be thankful you still have your parents'. Neither are true.

And if one more person says that you need siblings to support your elderly parents I will not be responsible for my actions.

Good to hear your brother is improving though. Have a lovely break

[whataboutbob]

Thanks everyone. I get counselling once a week which has been helpful and my OH is "solid" IYSWIM. I also have one close friend who funnily enough has a pretty poorly (but not demented) mum however she has 2 competent sisters to share things around with and a s far as I can see is a lot less stressed about things. Anyway she's v supportive. I also try not to let the stress affect my home life which is difficult but I'm getting better at not getting inapropriately angry with the kids when they are difficult. I must admit I am looking forward to the day I am not responsible for everything, but it's sad to reflect that will probably be the day Dad dies or goes into a home. As for my brother, after 9 months of going at GP , mental health team, psychiatrists etc with a battering ram, I hope than when my brother inevitably has a relapse I won't have to start again from scratch. It's been really hard trying to overcome the years of neglect/ inapropriate attention my dad treated his mental illness with.