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

[Numberlock]

As an aside, I had a wry smile watching Corrie the other day and Gloria's comment that £80k would be able to buy her round-the-clock care for as long as she might need it later in life...

[whataboutbob]

Hi I rang him he decided not to come, I think because he doesn't want to miss Church on Sunday.
There's a concert where we're due to meet 2 of his friends on Wednesday evening , so with a lot of planning and good luck we may just make that. DH should be in on Wednesday and if he's being kind he'll wait in and greet Dad while I'm at work.

[WynkenBlynkenandNod]

That sounds like a better option Bob. Everything is always with a lot of planning though isn't it, flipping exhausting.

When we thought mum was going into a home the other day DH didn't sleep much one night as he said the numbers talked about are like telephone numbers, he's not wrong.

[MrsFrederickWentworth]

Thank you.

DM has blackouts after any mental or physical exertion, but they don't show up on a heart monitor. She then becomes very confused indeed and her short term memory which was already poor is terrible.

She then is foul. She has been really nasty to DSiS, the local taxi driver, friends.

She refuses to gp into a home. She has finally recognised that she needs s full time carer, but yesterday tried to undo all the work that DSis had done about this. She undid the work that DSis had done arranging new carpets for the carer's room. She told the care agency yesterday we didn't love her and didn't care for her.

DSis lives in Switzerland and I live 200 miles away. We have suggested she live near one of us. She has refused. DH and I redid the house do she could live with us. She refused " because you are too boring".

I ring 6 nights out of 7. I write twice a week, though less now she has macular degeneration. My nephews go to visit her regularly.

She has been creating crises since Christmas. Every time one of us is leaving her she has chest pains and has to go to hospital. So we can't go.

Last year, I was going on holiday for a week for the first time for two years, having been bedbound for much of the year before. She rang me the night before to say she was in huge pain and had run our of pain killers and could I send some from where I was on holiday.

She is highly intellectual so if you have a conversation with her it sounds fine. She manages to persuade the doctors she is in her senses. But she cannot manage her finances or her life. And she claims we are hanging up and wanting her to go to an old peoples home or die.

I love her very dearly but she is not nice.

[MrsFrederickWentworth]

Sorry, long rant. Ganging, not hanging.

[Needmoresleep]

Awful. My mother is also very bright and has enough conversation to fool many people including professionals. It is impressive.

I have had her rant about her uncaring daughter in hospital waiting rooms and she is prone to telling any one who will listen that I am after her money. Staff where she is now confirm she has little positive to say about me.

Has your mother had a memory assessment. Where my mum is there is a new specialist memory service, which means staff have seen it all before. The nurse confirmed intelligence can skew the results significantly. Diagnosis was so important and her ability to hide the lack of memory so good that I threw in a couple of questions of my own when they were asking about her background. (Names of grandchildren! ) Not being able to answer rattled her sufficiently that some of the facade dropped.

Staff where she is now tell me that people who are trusted and close receive the verbal abuse. After three months my mums lovely carer is now reporting that my mother has become very difficult. It is as if her fighting for independence involves fighting those who are trying to help. Part steming from the fact the she does not remember asking for something or discussing something, so feels things are being done without her consent.

My husband tells me to ignore the aggression. She is ill. But not easily done. The lack of positive feedback, the loss of the person who was once there, the energy needed to resolve even simple things is awful.

I am lucky in that my mother's general health is exceptionally good, so I have been able to retreat. She now complains that she is bored or that her sheltered housing is a prison. 'They watch you all the time'. Old age is not fun but I can't solve these problems for her. She complains her access to money is controlled but has little else she can throw at me. I am told that after a while she should start asking to see me and should be nicer. Lets see.

In the meantime I am relieved to have a break. The verbal abuse was awful, worse on the couple of occasions when I lost my cool and shouted back. I dont envy you. Any chance of having her memory reassessed? And do continue to push towards a position where her care is sustainable and you can go back to being a daughter.

[MrsFrederickWentworth]

It is so good to hear this, not that you are in this situation but understanding and someone who is a little further down the track than we are.

Yes, I've had the financial blackmail too.

She is seeing the top memory person in the area next month. Perhaps I should go with her.

I'll pass on what the staff say to DSis if I may, as she is being especially victimized by DM.

I do think she gets chest pains, BTW, but I also think.they are sometimes self induced. She has always been prone to self pity and is manipulative, but age makes it so much worse.

How are we going to avoid being awful when it is our turn?

[Needmoresleep]

Go if you can.

1. You make sure she gets there. Though she wanted one on some levels my mum was also understandably nervous about the test, and the possibility of "failure". Left to her own devices she might have decided on the day not to turn up.
   
2. It was both interesting and useful to see where her problems lie, giving an insight into how she manages to so effectively to cover for her disability.
   
3. I got my own questionnaire where I was able to score things like her ability to cook, wash and dress, and which then got factored into the assessment.
   
4. By chance - my mother got confused on the date - I spoke to the clinic and was able to alert them to how my mum would present. It may be worth phoning in advance to alert them to the fact that your mum is intelligent, with good conversation and her disability may not be immediately evident. By being there I became the main point of contact and so the nurse then phoned me about next steps and I have an on-going point of contact. (I have POA.) During the test the nurse was quite firm when my mother, in an attempt to gain sympathy, started turning on me.
   
5. I did my bit of sneaky sabotage in terms of follow up questions where I recognised she had got away with a vague answer to the nurses first question. In the event the test was sufficiently long that she would not have been able to maintain her concentration. My experience is that once this goes it is evident to all that there is a significant problem. Indeed her concentration seems to be all that keeps my mother together. A mild infection and she was completely disorientated. Which may be the same with your mum. It helps no one if care professionals get the assessment wrong.
   
6. I got to ask some questions, eg was it reasonable of me to hold onto my mums cheque book. I now tell her I cant give her her cheque book as "the doctor said so", and as POA I am obliged to follow his advice.
   

By chance I had with me the 15 letters I needed my mum to sign, addressed to dodgy TV and Satellite firms who had sold her protection over the phone. When we got onto finance, she came out with the cheque book complaint. I brandished the letters as proof that my mum had a history of giving her bank details to people over the phone, and that she was financially vulnerable. If you have similar issues, whether health, personal care, getting lost or whatever, having evidence or examples might help.

My mother was never going to be a sweet old lady. She is too feisty for that. What we have had is a four year battle for control. It was clear she as not managing yet I had to hold back for three years and wait for the crisis. Once this happened, I needed to ensure her situation was sustainable. Having accurate assessments, and support from health professionals, was really important. Also people have gone out of their way to be kind to me when my mother has been nasty. (She is often worse when she has an audience.) This really helps. I suspect it is quite a common problem.

The staff say that in time the problem will diminish. Sadly as time goes on she will give up her fight for independence.

I now feel I need to work on my own personality weaknesses. Dementia seems to accentuate the worst of people's character quirks. The more practical solution will be to ensure everything is in order very early so that my kids can simply get on with making decisions. I am hoping by doing the right thing by my mother, they will understand the need to do the right thing for me.

(Sorry it is so long. I am still off-loading. Best wishes to your DSis. Dealing with savage and personal verbal attacks from someone you are trying to care for, really undermines your resilience.)

[MrsFrederickWentworth]

Need, that is fabulous advice.

We are do faced the with most of control, loss of independence, loss of memory, aggression space.


Thank you.

[whataboutbob]

Mrs F sorry to hear about your mother's hurtful behaviour, it must be so upsetting. I don't know if my dad will get like this, i suppose he could when the time comes for me to take some tough decisions eg he can't live in his home anymore. Was your mum like this before she became ill or is the aggression and attribution of bad motives a new thing?

[bizzey]

Good day and bad day yesterday....A lovely lady who dad and I met last week at the hospital when we got the news came for a home visit.

I had already pre warned her not to keep using the "A" word in front of mum too much...and she was fab;

But when she went mum just broke down and sobbed ...I think it finally hit her.

But lovely lady was so helpful I felt it was a good meeting.

Getting mum through this is going to be harder than getting dad through it.

We stayed with them last night as I did not want mum sitting on her own in a dark place feeling low.......but it meant I forgot about the time of a party I was supposed to have taken ds1 to today......he did not go.....crap mummy

[WynkenBlynkenandNod]

I can't add anything to Needmoresleep's excellent advice. I definitely needed to be at Mum's assessment, the Nurse would watch me for a subtle nod or shake of my head when Mum was answering questions and I had a questionnaire as well.

Bizzey, I'm so sorry, that must have been really hard seeing your Mum so upset cand you are not a bad parent, you'rea parent doing your best is very very difficult circumstances. My DC's have definitely been suffering recently.

[bizzey]

wyken thank you for your kind words...2 parents and 3 kids to look after is going to be hard....

I am sitting here now watching my HOT white wash going around....trying to work out what the suspicious GREEN thing is that is in there ....how did that get in !!!!...oh dear spotted something RED now as well......pink school shirts it is then

Deffo agree with needs advice of going to the appointments....they really value other people's view.....be it wife/husband/child..carer...In our first 10 min chat I think the doctor picked up on the fact that dad was not answering the questions correctly...(I am in my 20's according to dad !!! (46) )

Idid feel sorry for him when the doc asked him what medication he was on ///I butted in and gave him a list and said I doubt if anyone could remember all these of the top of their head !!!

Going back to the 1'st app....dad circled answer's while in the waiting room...I let him do it but secretly put an * on what I thought the answer should be ....but while the doc did cognitive tests on dad I was taken to another room and filled out a different form.

I t was a bit tricky as you only had a few options to circle......rarely/sometimes/always...(or something like that).....I felt dad was in between on some of them so I marked the gap in between instead !

I think the most important thing to remember is that while we are filling these forms for people we love we do have to be honest otherwise the doc will not know if the medication is working.

I hated having to bring up dad's aggression in public and felt like I was being very disloyal to him.....but it was one of the thing's that mum espeicialy and myself were dealing with ...and it was so out of character for him .

He has had allot of medical issues over the past years and we thought it might be depression and we knew we had to get it checked....but GP knows dad and put us on this route ....for want of a better word.

Still confused about this POA thing....I would feel I would be taking his last bit of independance from him ...might leave it for a while ....too much to take in at the moment.

Hope you all have a lovely Sunday

When ds1(who is now talking to me after yesterday's party fiasco ) has finished his home work we are going up there for tea.

Need the washing to finish first though to see the colours !!


[Flowers] to you all

[MrsFrederickWentworth]

Thanks for this.

Yes, she has always been manipulative which I put down in part to women of her generation not being able to ask for things directly, and she hates not being independent and in control and can be difficult. But I think need's dx describes it absolutely.

I already go to DH's consultant, Ds's one, so, hey, what is another? Just 200 miles...

How I hate being sandwich generation. I think I might name change and become Violet Elizabeth Both instead.

Our poor parents. So awful for them.

Yes, Need, you have inspired me to start throwing things away. And work on being a sweet old lady. Like Miss Marple.
Would do a smiley but on phone...

[MrsFrederickWentworth]

Bott, not Both. Bother predictive text.

[Elasticsong]

Hello all... Have been absent for a while due to overwhelming life stuff. Feel a little more even keel now.
Mum had two dementia screening blood tests, both of which came back negative. She's proving to be a bit of a mystery because she doesn't really have memory problems as such but exhibits other dementia symptoms - word-finding, fiddling with things, paranoia and a kind of shuffle when walking etc.

After much shouting on my part, she had a best interests meeting and a wonderful social worker and CPN moved her into the home of our choice for a further fortnight of assessment. That means she has had 5 weeks of paid-for care so far- a relief for my dad who's worrying himself sick about the whole finance issue.

Wanted to let you all know about this:
www.dementiacarematters.com/d5.html

The home Mum is in is one of these and I can't rate it highly enough. A relative of ours came to visit and she used to inspect care homes for a living. She (and two nurses, a SW and a CPN) advised me to fight for mum to stay here because it was quite exceptional. The care is tailored to dementia and the residents individuality and personality is truly taken into account. We were so lucky to have called them very shortly after a room had become available. If my mum has to live somewhere other than at home, then this. Is the place for her.

[Numberlock]

Hi all, I have a question please.

My mum was diagnosed last week with moderate-severe dementia, a combination of Alzheimer's and vascular dementia. I spoke to whoever carried out the assessment and they said she would have a follow-up visit today when they would discuss medication. They feel this would help manage some of the symptoms, in particular the aggression.

However, my mum refused the medication so they can't prescribe. This seems ridiculous, she didn't have a clue what they were talking about.

Has anyone had experience of getting this opinion overturned?

[Needmoresleep]

Poor you.

There is an article in this week's New Yorker about dementia care. Their approach sounds positively stone age compared with ours. (Over medicalised with lots of restraint.)

The cost however, is the frustration when dealing with issues where you might know what is best for the "client" but they wont go along with you, sometimes expressing a different view form that expressed only a few minutes before.

I dont know when someone with a care POA can take over. The Alzheimers Society helpline would be the people to ask. If there is not a POA I doubt anyone would overrule your mother and you would have to rely on coaching her in advance. (If medication is what you think she really wants.)

[Numberlock]

Well a couple of phone calls later it has been clarified that she accepts the medication to cope with the agitation/aggression, it's the medication that might help with memory that hasn't been prescribed.

There's so many people involved it's hard to get to the facts sometimes.

[Numberlock]

Can someone clarify the difference between EMI and EMD care homes please?

[WynkenBlynkenandNod]

I'm really sorry Numberlock I don't know on either the Meds or the homes. Hopefully someone else will but if not Needmoresleep's suggestion of the Alzheimer's society is a very good one. Sounds like you're having a miserable time , sorry

[Numberlock]

Thanks so much. I will call them tomorrow.

[WynkenBlynkenandNod]

Bugger. Had a call from Mum's neighbour to let me know she'd had a solar panel company in the house , he'd been taking photos etc. Rang Mum, no answer until she finally did after a few goes. Said that at pick up people were saying about a solar panel company doing the rounds, we'd just had them, wanted to check they hadn't bothered her.

Oh no she says, they haven't been here. Not much I could say to that without grassing up neighbour . Who knows if she's signed anything .

[CMOTDibbler]

Does the neighbour know who the company is? If so, phone them, tell them your mum is not capable of making a decision or commitment and if she has signed anything to tear it up immediatly and not call again. This tactic has worked for dad when mum has got hold of the phone

[WynkenBlynkenandNod]

No, unfortunately she forgot to take the name so I am none the wiser. A CCTV camera is going up soon which we hope will be a deterrent. I am eating cheesecake .