In Denial and Refusing all Help. Help!!!

[SusanB]

Thanks, JimSandy for letting me know your own experience and it sounds like your Mum received the right treatment in the end.

Mum gets very angry when she is "crossed" - ie when she is told that she can't do what she wants to do, or that maybe, just maybe, she is not well enough to travel 6 hours to Italy or spend 8 hours going to visit her brother or anything really!

We've just been clearing up the proverbial mess left by my Uncle, who without realising it has instilled a high degree of panic and anxiety in her during his visit last week. He did lots of gardening (fab) and made a thorough assessment of the (minor) repair work that needs going on the garage, side gates and garden fence. However...here's where the problem started. He talked about it too much! Also, he left a list of stuff that needed doing and now Mum thinks that the house is falling down around her ears.

Oh Dear. A conversation last Sunday to suggest that her family take her of this was met with firm agreement and then 24 hours later when I went over there...I was shouted at for "interfering" when I said that we were going to organise these jobs for her. She then left two abusive messages on my answer phone and made 2 more phone calls. Oh dear (again).

Bizarrely, when I told her that I would not help her if she shouts at me, the response I got was "When did I shout at you? I haven't shouted at you".

My brother rang her up (on my request) to tell her not to buy any materials or Cuprinol and that he would organise it.

My sister rang her up (on my request) to re-iterate that we were going to look after repairs on the house.

Yesterday, I hear from her neighbour that she has gone to buy Cuprinol and has planned to start on the repairs on Saturday - she has no idea what needs doing, or what she's going to do. Beware an old lady with a tin of wood repair stuff.

Excuse me whilst I just go and bash my head against a wall.

That's better. Ouch.

 

[Helena]

Susan

Just another very apt and totally true description of a stubbornly independant old lady with Vascular Dementia

Your Mother and mine

Something else that needs adding to the societys PDF

 

[BeverleyY]

My Dad has VaD, but he is extremely sweet, loving and considerate to me. He never looses his temper really, although he is stubborn. He has always been the most placid person so, maybe he is clinging on to that part of his personality.

He had started telling my Mum that my husband was poisoning him (he would never tell me that though).

He hides money (or anything he thinks is important). He is hopeless with money overall, always asking me how much he has in the bank now. He lives with me, so has no bills to remember to pay anyway. He is still razor sharp at counting though, and is always working out how what 50% or 25% of an amount is.

He is in virtual total denial though. He does say he knows his head doesn't work properly (he blames too many knocks on the head in his youth and in the army when he cleared mine fields).

He consistently tells the doctor he is fit as a fiddle - then, the next day he tells me to put him in a home or get him a flat as he knows he gets confused and must be too much of a burden. He says I should concentrate on my kids (7 and 13 and my husband). We just tell him.. sadly, he is stuck with us because we want him to carry on living here. We've had 5 with him and Mum here, and now just because Mum has gone we don't have any plans to change that. He laughs '5 years? 5 years?, then how comes I can only remember being here about 2 weeks Beverley. If it's really 5 years, and I believe you because you are my baby (I'm 38) then I must be flipping crazy'.

So, although the does appreciate things are not functioning 100% correctly, he doesn't actually accept that needs the help. He thinks he could live on his own.

He tells me he no longer needs to shower as he doesn't work. I have to cajole him in there, telling him it's a special day - going to the bank, going to the doctor, visiting the cemetery. That works, although he does moan it's not necessary as he showered yesterday (in reality, maybe 5-8 days before!).

He gets suspicious, I heard him once tell Mum I had only asked them to live with me to take all their money. That actually really hurt me at the time as I never realised how delusional he can be and the fact that I am worse of financially as a result of this really grated on me. Sometimes when sorting his 'important tin' out, everyone has to leave the room. Thing is, he then hides stuff and we can't find it. Currently missing bus pass and bank card!

He seems to have lost the ability to spell (but, his spelling was never great as he is Polish, and he never learnt English formally). I realised 2 weeks ago though, that his spelling is now virtually non-existent - he couldn't even remember how to spell my Mum's name when he wrote the card for her funeral flowers. That was upsetting for me to watch. He said to me, Beverley I am ashamed to tell you, I can't spell, I am am dyslexic! God knows where that came from

So, for now he is mild and gentle although stubborn. My Mum did tell me before she died that he was losing his temper and getting aggressive, but thankfully I haven't seen that.

And... as for useless siblings... don't get me started!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Beverley

 

[SusanB]

Beverley,

What a poignant picture you have painted of your Dad. It made me quite sad, as my own Dad nearly two years ago (mind you he was nearly 90 - yikes!) and I miss him every day. I sometimes wonder what would be happening with Mum if he were still alive.

You are far too young to be going through this (I thought I was too young - 44 - but you're only 38) and I feel for you.

I also have heard Mum telling us that, in her instance, she doesn't need to wash her hair as she "only did it last week". Hmmm...yes, Mum and I live in Outer Mongolia. Sometimes her hair smells and it's a bit yuck!

The spelling bee problem hasn't happened (yet) but my Mum could head M15 with her suspicious tendencies! Luckily, we've not being accused of trying to poison her yet (on her bad days, I'm tempted though...only joking!) but no doubt that is one of the joys to come.

I hope that you are getting support where you need it, Beverley as you already have big commitments with your family and things, sadly, will decline in time with your dear old Dad.

Anyway, my best wishes and hopes are with you - and with all of you whose loved ones are slowly disappearing through the wicked disease that is dementia.

Susan

 

[BeverleyY]

Beverley,

What a poignant picture you have painted of your Dad. It made me quite sad, as my own Dad nearly two years ago (mind you he was nearly 90 - yikes!) and I miss him every day. I sometimes wonder what would be happening with Mum if he were still alive.

You are far too young to be going through this (I thought I was too young - 44 - but you're only 38) and I feel for you.

I also have heard Mum telling us that, in her instance, she doesn't need to wash her hair as she "only did it last week". Hmmm...yes, Mum and I live in Outer Mongolia. Sometimes her hair smells and it's a bit yuck!

The spelling bee problem hasn't happened (yet) but my Mum could head M15 with her suspicious tendencies! Luckily, we've not being accused of trying to poison her yet (on her bad days, I'm tempted though...only joking!) but no doubt that is one of the joys to come.

I hope that you are getting support where you need it, Beverley as you already have big commitments with your family and things, sadly, will decline in time with your dear old Dad.

Anyway, my best wishes and hopes are with you - and with all of you whose loved ones are slowly disappearing through the wicked disease that is dementia.

Susan

Up until now Susan, no help. We've muddled through the past 5 years. Only now do I realise my Dad is worse than I had thought, and I so want my Mum back to tell her I am sorry for not realising. She had kidney failure, and her illness seemed much more obvious than his 'forgetfulness'. She didn't want me to know he had said my husband was poisoning him as she didn't want to hurt my feelings. It's only now that I realise she actually used to enjoy going to dialysis 3 times a week as that was her 'escape' from him. It's a shame we realise things too late, and I could cry at the amount of times I told her not to lose her temper with him, and let his repetitiveness wash over her. I never realised how difficult it was for her to get him to shower etc.

The past month has been an awful shock. Mum getting pneumonia and deteriorating rapidly and dying, and me suddenly left with the realisation that Dad has only coped in the day as Mum has been here.

I'm left picking up the pieces, trying to arrange day care, trying to weigh up whether to quit my job to care for him. Ideally, day care 3 times a week will be perfect - I'll do a day from home, so will my husband. I have found a nice home and it's only £15.00 a day. I just have to keep my fingers crossed when they assess him next week that he is acceptable as they are a residential home, and not licenced for Dementia. Reality is, most residential homes have 'confused' clients, they know they have Dementia, just they don't 'know' officially.

If day care doesn't work, or they won't accept him, I'll quit my job.

He has a Care Manager, but in all honestly, she doesn't really seem to be able to do much more than I can do myself - other than make referrals where they are needed.

She'll sort out Direct Payments... but, Dad is over the threshold for help.

So, come the point where Dad needs full time care in an EMI nursing home, and the £925.00 a week eats up his savings, then the Care Manager might be able to help me sort funding.

Now, I feel my blood boiling... nearly £4000 a month, to 'exist'. And God help him if he spends all his money whilst he can still actually enjoy it, or then Social Services can say he did that on purpose and refuse funding.

Aaaargh. Is it only 13.34?? Is that too early for a G&T?

Beverley x

 

[SusanB]

My God, Beverley

I don't know you but I had a few tears in my eyes to read your last post. How sad that you have lost your Mum so recently and are now having to cope with what's happening to your Dad. I do hope that you are OK.

Do keep pushing for support and help. You must do this: what would happen if you got ill, or couldn't cope for any reason? Your family relies on you (although they perhaps shouldn't!) and you need to look after yourself as well. Did you know that bossy was my middle name?!

It's hideous that if you have over a certain amount of savings £21k I think) you have to pay for your own care home, or care of any sort, it seems. We should knock on doors and campaign about this, shouldn't we? What's the point of saving for your old age if the government just takes it away again? in empathy here.

You could try the local Alzheimers Society - I know your Dad has VAD (my Mum has that too) but they are a "coverall" type of charity and I have already received some counselling as the main carer for my Mum and I'm due to have a carer's assessment soon, although I'm not quite sure what that is, as I don't live with Mum. Anyway, maybe that would help? A problem shared with someone who has been through the same situation really does cut it in two. Homilies from Hove!

 

[SusanB]

Never too early for a G+T Beverley It's Friday and it's a leap year.

 

[BeverleyY]

What I can't understand is the threshold is £21,000, then help kicks in on a sliding scale. I believe that if you have £13,000 or less, you are entitled to full funding.

Does that mean that when your savings get to £13,000 they stop taking it I can't believe the Government are that generous to leave you with £13,000 cash.

Can anyone clarify what happens when it get's down to £13,000 (which let's face it, happens PDQ at the rates EMI homes charge).

Beverley

 

[Helena]

Actually under the 1946 National Health Service Act everyone is entitled to totally free care

They are totally illegal in demanding care home fees

see www.************

 

[jenniferpa]

Beverley - yes for those between 13000 and 21000 there's a calculation used to produce something called "tariff" income, which is used to calculate your contribution. Once you've reached the lower limit then they stop this and you're on full LA funding. The system that is used to calculate this is encapsulated within something called CRAG - Charging for Residential Accommodation Guidelines, all 90 odd pages of which may be downloaded here http://www.dh.gov.uk/en/Publication...tions/PublicationsPolicyAndGuidance/DH_073650

 

[BeverleyY]

Beverley - yes for those between 13000 and 21000 there's a calculation used to produce something called "tariff" income, which is used to calculate your contribution. Once you've reached the lower limit then they stop this and you're on full LA funding. The system that is used to calculate this is encapsulated within something called CRAG - Charging for Residential Accommodation Guidelines, all 90 odd pages of which may be downloaded here http://www.dh.gov.uk/en/Publication...tions/PublicationsPolicyAndGuidance/DH_073650

Thanks Jennifer - bedtime reading!

So, they have the decency to leave you with £13,000. I am pleased, but surprised. I would have thought the wolves would have taken every penny.

My sister and I had our 'inheritance' 5 years ago when my parents sold their property, and I always felt happy that they benefited (I used my money to put towards the house my parents moved into with us). Their remaining cash was always to be split between their Grandchildren. I had come to think that wish would never be fufilled as it would all vanish if ever Dad needed to go into a NH.

Mum signed away some not long before she died, so that is sitting in a 'pot' for the children.

I think the system is ludicrous - not just for my parents, but for anyone that has slogged their guts out to put money away. They worked for it, get taxed on it, pay NI on it... and still, that's not enough!

Beverley

 

[jenniferpa]

The cynical part of me says: well they don't want to be responsible for the funeral expenses. Actually prepaying funeral expenses is a valid way of spending down if you haven't already done it.

 

[BeverleyY]

The cynical part of me says: well they don't want to be responsible for the funeral expenses. Actually prepaying funeral expenses is a valid way of spending down if you haven't already done it.

Hadn't even thought of it that way, but yes, I guess you could be right.

How thoughtful of them to grant such a large pot of cash for burial. You would have thought that they would deem just a few thousand adequate!

I hadn't thought of pre-paying, and it sounds terribly morbid even thinking about it - but, what you are saying makes total sense.

It either gets spent pre or post the £13,000 threshold, and pre makes total sense.

We haven't even paid the bill for Mum's funeral yet. It only dropped on the mat 2 days ago. Maybe we should ask how much to pre-pay Dad's!! We already bought his plot side by side with Mum (he doesn't think one on top of the other is the right thing to do - side by side is how he says he wants to be with Mum).

Goodness, now I really need that G&T I talked about earlier after all that.

Beverley

 

[jenniferpa]

Ooo I think it's an excellent thing to do. My mother did this (bless her) and the only thing extra I had to pay was £85 because cremation is more expensive in terms of certificates. Also, because she had specified exactly what she wanted I didn't feel pressured to go overboard on brass handles etc.

 

[BeverleyY]

Ooo I think it's an excellent thing to do.

Pre-pay... or have a G&T

Ah, you have to smile. It's all so depressing.

Beverley

 

[SusanB]

A Good Day Today!

Thought I would post some good (or better) news today:

I had today as annual leave and invited Mum down to the town to tag around the shops with me and to have some lunch. Well! what a contrast to her recent behaviour: She arrived without getting lost, was in a good mood (to match the lovely weather today), came around the shops with me, had a coffee, was lively and cheerful and you would almost never think that there was anything wrong.

A few bad slips of the memory but otherwise a very good day. We laughed at funny stories, discussed holidays (Isle of Wight - we're going with her) and lots of nice things.

Phew. Nice to know that not all days with dementia sufferers are grim.

Susan

 

[Grannie G]

A lovely post Susan.

There are good times to be had and they are evn more precious than they were. I hope you have many more days like this.

Love xx

 

[SueG]

Hi Everyone!
That G& T sounds agood idea to me!
Just an update on the home visit on 14th feb! Consultant was lovely andclearly saw through all the stories. I'm a little confused thogh because he is going to prescribe medication for her where as 2 years ago we were told she wasn't suitable!
Anyway Mum told him quite clearly that she won't take it as tablets make her sick!He then said he'd arrange for someone to call each day to give it to her.
That opened the way for CPN to talk about someone calling in to help her. Mum refused as she said she did all her own cooking cleaning washing and ironing, bathed every night and washed her hair once a week. I don't have to tell you that that is complete fantasy!
CPN (who is FAB!) is arranging for a visit from Social Services to assess needs so fingers crossed!
Mum did eventually agree to all this but within an hour had no recollection at all of the visit.
Nothing has happened yet but I suppose these things take time. Mean while GP is also surprised but reassured me that both Consultant and Cpn are wonderful. Also found that my blood pressure is through the roof. What a surprise! So now I have to get that sorted.
Anyway I hope things will get moving soon for Mum and life will be a little less stressful for me?
Or am I being too optimistic?
Sue

 

[jenniferpa]

I don't know whether you're being too optimistic - hopefully not, but as to a time frame, I would suggest you think of a period of time and then double it: these things are slooooow.

As to the medication - NICE guidelines do allow for medication to be prescribed when someone has deteriorated when they might not have been eligible before. Sensible, no, the way it is, yes. Also, the consultant may feel that your mother's dementia is not vascular as previously indicated but in fact AD, which would make medication more likely. Or possibly, he is prescribing "off label" - the dementia drugs are often prescribed in other countries for vascular dementia, just not in the UK.

 

[SusanB]

Hello, Sue G

Your mum sounds exactly like mine! She "presents well" and I fell that she fools the professionals much of the time. LIke your Mum, I think that they do see through her bizarre lies.

However, last weekend she was hospitalised with a mini stroke (TIA) and has had a bit of a set back since then. She's had these several times before but this was the one time that I was actually there to witness it and therefore call 999.

A couple of days in hospital has made her a little fragile but she seems OK. Am I OK, errr....next question?

Major move forwards and here I have to admit that i WILL NEVER GO TO HEAVEN: I've told her that Meals on Wheels are doing a survey of people in her area and are looking to roll it out to people in the county based on her opnions and those of others who are trialling the service free of charge for three weeks. This is not true. I'm paying for them (v. cheap) and the lovely MOW people are playing along with it.

Here's the rub: I've designed a fake Assessment Form marked from 1 = poor to 5 = excellent and told her she needs to give the form to the delivery driver every Monday. She can't wait!

Anyway, Happy Mother's Day to those parents out there and I hope that you'll forgive me.

Susan