Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

[CMOTDibbler]

There seems to be lots of us here struggling with someone close that has dementia - be it Alzheimers, Fronto temporal, vascular, Picks or any of the myriad others.

So come and chat with those who know how it feels to have to choose a meal from a menu for their own parent, what its like having small children and a demented parent at the same time, and how you explain to children just why grandma says such odd things

Another thought. Is thete the money tp pay for a week or two of a carer. You need the break and need te to spend with your mum. Plus it would give ypu a bit of time to investigate and sort out a longer term solution.

If you can fund it, then Google dementia care in your area, look at some homes on line tonight, then phone round the ones that look suitable in the morning and ask if they have a respite place available. With any luck, you'd be able to get your dad in somewhere tomorrow.
I think that if you've not already had an SS assessment etc, they wouldn't be able to help tonight, but you could also ring your dads GP in the morning and say you need help, and you need it now so could someone from SS call you urgently as you are in danger of breaking down.

I'm so sorry to hear your mum is so ill.

Waterlego, I'm very sorry to hear about your dad. If you want to stay around, please do.

My mum is still not eating very well at all. She won't have Fortisip/Complan, and won't even be tempted by cream cakes. Dad narrowly evaded hospital yesterday as his catheter was blocked again, the DNs on duty 'weren't signed off to change catheters', but his GP came out and managed to get one in again.

Thanks all, called social services helpline tonight, waiting for someone to get back to me...

As an aside, found someone on another thread who's coping with a parent with dementia, told get about this thread but don't know how to let her know the link. Any ideas..?

Hello! I've found you! Will read through the whole thread tomorrow, as I'm really tired tonight! Sending my support to everyone here, it is hell, isn't it.

Oh Scarlet, what a nightmare I hope someone got back to you and things are kicking into motion. I'd try a double pronged attack and ring your GP. Phases you want are your Dad is a vulnerable adult and you are withdrawing your care due to the situation with your Mum and imminent Carer Breakdown. Explain that when you simply had a bath it resulted in a neighbour bringing him back, you feel he is a risk to himself, can not be left but you are going to be by your Mother's side today so someone needs to look after him . Are your sisters on their way ?

Smiling I'm sorry the wheels are turning so slowly. It sounds like you have a strong relationship though and are managing to put a degree of separation between yourselves and the situation. I think that massively important, though easier said than done.

CMOT it sounds like it's coming at you from both ways at the moment.Glad your Dad's catheter is back in and am hoping your Mum starts eating again. I don't think the weather helps.

Big day for us here. DS off on school residential for the grand total of one night. Last week I felt his suitcase might defeat me but it's sorted ,0. dH taking him as I am walking dog then going to Mum's to meet SW for assessment. She will then speak to my Brother tomorrow and he has agreed to go with what she says. She's aware of the history of not accepting live in care so unlikely I feel to say that is best option.

I suspect arrangements will then be resumed for her to go into the flat unless SW comes up with something else. Brother said Mum becoming increasingly muddled and isn't sleeping as scared of what's ahead. He hasn't been ringing her daily either as he said he would . The big problem will be getting her out of her house. Stealth has now been sanctioned by SW if it coes to it but would rather not. Had dog walk with physio friend who was very helpful but realistic. I was saying I was relieved we'll get her out without being sectioned and she pointed out very gently we're not out of the woods with that yet.

Of course no one got back to me!Got a call from the care home last night and they said her breathing was more shallow and it looked like she was nearing the end. Went and sat with her and held her hand and just sobbed. It will be a blessed relief in a way when she goes as I lost my mum 4 years ago after her severe stroke. Told my dad but he didn't really comprehend it and just kept asking what time is it, what's for dinner, whats on tv etc...

Scarlet, have a big hug and some virtual wine and chocolate. Your dad asking about supper must have been awful.

Moment of humour today - dad had put mum in the back garden to do some weeding (she can't walk far enough to go anywhere, so he pops a chair out and she pulls stuff up). She came in wet. When asked, she said the 'chair put her in the pond' . Dad got a rare smile from that

Hello all again ...got a little obsessivly sidetracked by the tennis...but have sort of caught up now .

Goodness ...so many posts...but Scarlet (hello) my heart is going out to you and really hope you get some proper help soon.

I need to say something that has been troubling me and now I feel bad for those thoughts and only on here will it be understood.

I had got to the stage that I was so sick and tired of looking after dad and sorting mum out that I kept thinking "why can't he be like other people we know of his age"

I don't want to have to do this.....and all the other feelings...why cant he be like FIL....

Eg...FIL ...same age,drives,no health issues,go out ok ...helps dc's with homework if they visit during 1/2 term holidays sort of thing ......

FIL had a massive stroke yesterday..and prognosis is not good

The future is just too hard to write sometimes

Best wishes to you all

Scarlet, thinking of you. This is the hardest of times, try and remember things have to, will get better.

Bizzey. Thats awful. What with you, Watrrlego and Scarlett it just seems more bad news piling on those who are already facing enough.

And don't worry about the thoughts. Its what you do that counts. And everyone appears to be shouldering their burdens with grace and selflessness.

Best wishes to your FIL and family.

Thanks to all for your kind words, it means a lot. Sorry I haven't been able to be supportive to others here, as I would normally be, It's just a bit overwheming at the moment. Problem is, there's no 'happy ending' to any of this, the only 'ending' is death. Sadly...Love, light and strength to you all x

Scarlet...remember support comes in different forms....I am still at the beginning of my journey.....though it feels like a life time sometimes...

My "advice" is usually rubbish !!...and involves silly stories and things I would not be able to say in real life...

But you are supportive to us by being here...it would be a poor thread if no one joined in.

We are supporting each other...because we know we are not alone and can say what we want and not be judged ...

Take care x

Scarelet you and your Mum have been very much in my thoughts. Bizzey I am so sorry to hear about your FIL.

Eventful day yesterday, Mum now in CH flat. GP says she has an infection, most likely urinary. That makes sense as despite managing to nearly convince the SW she has a system for remembering to drink, she doesn't and I feel totally vindicated in saying she is becoming a danger to herself.

She also didn't press her button again, waited till 8am then rang for help. DH answered like last time but knew to press the matter and she admitted she felt well. All would be ok as Psychiatrist said she doesn't have capacity but my brother is pretty set on live in Carers and set to kick off. He'll have to get her a taxi though as I'm not picking her up. Poor thing threw up in the car and felt too unwell to speak to my Brother. Busy day moving stuff today.

Just spoken to Brother. He's spoken to SW and apparently she's coming home next week as she agrees Home Carers are the right way to go. I'm am now having nothing to do with it.

Absolutely, Wynken - if your brother wants to go that way, let him organise it all. Sorry its not going well though.

Mum blew up the microwave yesterday by microwaving a saucepan. And the SS contractor turned up to fit their grab rails without any grab rails (and they'd told dad on Tuesday that they were out of stock). Cos thats really useful innit

Mum has eaten a little more over the last couple of days - about 2 TBSP per meal - but is being sick again.

Oh dear, your poor Mum CMOT. I hope she improves very soon.

Moved Mum's sofa and other bits today. She hates it in there . CH left message to say she had a good night, was staying well, had been up to socialise with other people. We couldn't find her when we got there.

Does anyone know about POA and bank accounts? We are jointly and severally for Mum apart from the house which we both have to sign for. When I got my POA debit card I was told it was only for things I arranged ie. not things he did, that he had to get one and that neither of us must use Mum's.

As Live in Carer is what he has arranged I can't pay it from my card can I, he has to ? That's my understanding, I am correct aren't I ?

Oh now his solution is for me to pay the money into his account each month. Not happy with that.

That doesn't sound right at all Wynken - I'm not sure of the letter of the law, but you can see that it must be the only auditable path that a POA holder can only disburse for things that they know to be correct and true.

I don't think the vomiting will get better - its been getting more and more frequent in the last year so must be associated with her failing swallow

It is absolutely essential that her accounts are kept separate from those of the Attorney's. Otherwise he is essentially opening himself up to criminal charges. You should reread the rules and refuse to be party. If she were to die soon both probate lawyers and tax authorities might request proper accounts from the Attorneys.

The solution might be for him to set up the internet banking and make appropriate transfers to the care agency. Keeping all revenue and cast transactions to a single account will make record keeping simpler.

Oh CMOT I am so sorry

He can't set up Internet banking as he hasn't been to a Barclays, said he couldn't - though I found an Investment branch over there for him he said he didn't realise.

I am considering resigning as Attorney, have started thread to see if I can. I am unable to work with so done in that capacity who threatens to show my emails meant as a joke which he knew to the SW and say I am not capable of a rational decision. Also when email sent advising what friend who is experienced Mental Health worker said about her now being a risk to herself and needing assessment under Mental Capacity/Health Act (she was then found to not have capacity) he accused me of nuts.

My blood pressure is rising and I want out before I have a stroke so I am going to try to extricate myself.

Sorry, that's work with someone. I am thinking about this more and I feel thatbi am consistently being bullied by him. He's currently claiming it's all above board and it is only using so someone's card that is a legal issue and if not I wouldn't be able to transfer money out of her account.

Says he will run it past his solicitor but he will not say any different. That where we chose to spend the money is our business now we have POA not the Banks.

He's completely missed that transfers can be made so utilities etc can be paid and that complete accounts have to be kept. I have absolutely and utterly had enough now. He has fought me every step of the way for 3 years now. He can deal with Mum, she is the only person he has in his life. I have DH, DC's, my Dad and his partner plus my Aunt and cousins.

Apologies for rant.

Rant away, he is behaving like a complete tosser and a bully. If he knows best, he can get his sorry arse on a plane and sort it all out

Thank you CMOT I will sleep on it but at the moment I am definitely leaning towards resigning. He'll still be able to pay the Agency until he gets sorted as with help she'll be able to write a cheque.

I've looked back and the biggest stress over the whole sequence of events from realising there was a problem to where we are now is him. Each step of way he has fought me and I can not see this changing. He throws whatever he feels like in my face and never apologises, not even when shown to be wrong.

So in the interest of trying to maintain a relationship I think I now take myself out of the equation . I don't think I'll go to the Best Interests meetiing when it happens either. My Aunt and Mum don't talk after they fallout when their sister died and I don't want to repeat history . He might nit care if he is estranged from family (my Dad) but I do ad it would damage how i see myself. I shall decline to be Executor when the time comes, she has named me as sole. A solicitor can do it .

My friend is quite senior in community mental health has said she will happily help me appeal on the latest care decision and she doesn't think i can leave it as I'm so angry. But that if I'm going to step back i would really need to wash my hands and let them stew. she said don't make excuses about not doing something, just say no and let others draw their conclusions. It's lovely of her to offer her help but I am going to decline at this point and walk away from it. I will pick her up and take her home when she comes out but have already said Carers will need to take to Memory Clinic etc.

I'll see how I feel in the morning and over the weekend and if still feel the same tell him I am resigning (after I've sent card back etc.) He said today he would be the first point of contact and I would only be asked to do something if it needed someone who is actually here. Well good luck with that, he doesn't get to make the decisions then have me pick up the pieces. I think the SW will live to regret her decision by the time this has finished. Hopefully I get to just go and have a cuppa with Mum and none of the stress anymore (well I need to live in hope)

Here endeth the rant of Wynken.

Dont make any hasty decisions and give yourself a bit of time. Its disappointing that the SW has decided to support his approach not yours.

I would not even bother to take your mum home. Your brother can organise a taxi.

If she is in somewhere supervised the burden does not fall on you. If she is at home the assumption seems to be that you can be relied on to pick up any pieces.

I would simply tell your brother that you appreciate his willingness to take over the responsibility. Given you both have different approaches and given you are tired, you welcome the break. Easier if he now takes over all the day to day stuff. Including organising the payment of bills.

I would not resign the POA. You will want it should your brother not step up to the mark.

I agree also about allowing your brother to sort out memory clinic attendance. I suspect they wont be thrilled to hear that SS have decided to follow your brother's 'informed' view.

So first thing. Do not pick your mum up. This is for your brother to do. He needs to arrange there is fresh food, that her fluid intake is supervised etc. Rule 1 is neither he nor SS should expect you to run around. They have decided that your mother is safest at home. You disagree, and feel this action will put your mum at risk. Hence you are not prepared to enable.

Also if there is a problem and your mum calls you perhaps you say that you will alert your brother.

What a mess. I am very shocked by the Social Services approach. They are meant to be safeguarding your mother. But then we are still waiting the discharge assessment for my mum from last December. It took a lot of chasing and two missed appointments before they turned up and now a couple of months later we have still to get the report. If she had not had family and cash my mother would have been sent home to an unheated flat in a confused state with a broken hip, no adaptations, no care plan and no means of shopping.
Given our mothers live in the same part of the country perhaps I should not be that surprised.

Still brace yourself. You are out of the loop. Take time off. Rest and recover. Dont enable.

Hmm, I know you are taking sense . Thing is he will bully me into paying the Agency bill with my card.

I think what shocked me the most is I stood outside talking to SW after she said case conference was next and said I'll get Brother to ring you. She said ok but decision isn't mine now we're having case conference but I'll tell him what I saw today. Then said she agreed with me, her judgement and insight is the issue.

Next minute I am being told by my Brother who hasn't seem her in all that time, blocked diagnosis for a long time which meant delay in Meds , that he has spoken to SW and she absolutely agreed with him, Live in Carers trial is absolutely the right thing to do. and he is still refusing to come back yet.

And this is one week after a Psychiatrist has said she lacks capacity to make decisions regarding her accommodation and said to her she'd need to leave and make it easy on her children.

Now she knows she doesn't need to stay in flat she's determined she hates it and I don't think it will be an option if live in care goes wrong, not least because the staff will be hacked off. So the only option I'd actually managed to find that would have given her independence is gone too.

I think friend shocked too but managing to stay very professional about it all. It does indeed seem SS down here at a total shambles then. They left a friend's brother for month's and months without a residential placement until he wandered off and the police had to search for him.