In Denial and Refusing all Help. Help!!!

[SusanB]

I am really new yo this site and have already found that there are people who know what I'm going through. My Mum has both Vascular dementia and alzheimers and is rapidly going into a fantasy world of her own. In spite of frquent vivts by our CPN she still refuses all help and I have to keep one step ahead of her regarding food. Too much and she throws it all out too little and she could eat it all at once. My main concern is also that of personal hygeine. She absolutely refuses to have her hair washed and although she tells us that she bathes she very clearly doesn't. I'm so saddened to see my vibrant smar beautiful Mum degenerate to looking like this.
I only have one sister who lives in London so it's all up to me.
Greatful for any suggestions please
SueG

Hello, Sue G

Another person in a very similar situation! Poor you - you must feel very sad to see your Mum like this. I wonder what the CPN has suggested? If your Mum trusts him/her she could accept a suggestion for support, maybe...or the GP. GPs (doctors, lawyers etc) are held in high esteem by older folks - esp GPs - so maybe her GP could visit to read her the riot act, nicely of course.

Don't know if this is any help, to be honest, as you've probably already tried this but do let us all know how it goes.

 

[SueG]

CPN has just phoned me to say that the consultant is going to make a home visit to mum on 14th Feb.So perhaps there will be some headway made. Until then we just plod along. I've not got any further with the bathing probblem and find that mum really gets very distressed at the very mention of it. Although she often says that she has a bath whch is clearly not tuei

 

[SusanB]

Mum is having a bit of trouble with personal care, too although she doesn't realise it. Her neighbour literally had to TELL her to wash her hair a couple of days ago and so she did!

Is anyone else having any trouble with:

1. A change of personality every few days or so - going from pleased to see you and all that you do for her/him to anger and resentment at being "told what to do", eg buying her something, as I did (tea towels!) and then being offended (having forgotten) and thinking that I was passing judgement or something.

2. Being suspicious and mistrustful regarding money. I think the answer must be "yes" to almost everyone logging on here. It's...horrible. I tried to mention registering the POA to her last night only to be met with a hateful angry look.

3. An increasing liking for sweet things. Bizarre - she never used to like puddings but now she just loves them.

4. An increasing lack of social skills.

Susan

 

[Helena]

Susan

My Mother was exactly the same
The most frustrating part of VD is the vehement denial
The dirty state of virtually everything in my Mothers wardrobe and her house were testament to the decline in her last 2 or 3 years of life

The only way to make her do anything a few months before she died was to effectively shout and have a blazing row with her
Peaceful persuasion got us nowhere

Denial , loss of ability with money and paperwork and "its my home I am not moving" seems to be the first signals of VD

 

[SusanB]

Hi Helena

What a pity to hear that your Mum had VAD and that she has now passed away and I was sad to read of her decline. I'm sorry to intrude but how did she pass away? I mean, did symptoms relating to what caused her dementia (in my Mum's case, heart problems/heart attack/atrial fibrilation) eventually cause her death or was it not related? I'm interested to know but please don't respond if you think I'm being nosy.

I know that there is a difference between VAD and Alzheimers in general terms - a "stepped" decline (in vascular d), patchy loss of cognitive function and I THINK problems with money but does denial happen in other dementias or is it more common in VAD?

I guess I'm saying...what can I expect???

On a positive note, my Uncle is staying with Mum and although I sometimes think he's on another planet (lots of conversations about personal development, the Quakers (?), etc) he does really love her and I wonder if he too is in a bit of denial about her decline. Mum is TRYING REALLY HARD to behave as normally as possible, trying to look after him, cook (oh dear), plan things (worse), understand what's going on (don't start) and generally come across as this totally healthy independent person.

 

[Grannie G]

Dear Susan,

I wouldn`t be surprised if your uncle knows full well what`s wrong with your mother, but is doing the best thing he can under the circumstances by going along with her behaviours and intentions, not crossing or contradicting her and accepting her for who she is.

This non-confrontational interaction has often been found to be the most successful with those with dementia.

 

[SusanB]

Dear Susan,

I wouldn`t be surprised if your uncle knows full well what`s wrong with your mother, but is doing the best thing he can under the circumstances by going along with her behaviours and intentions, not crossing or contradicting her and accepting her for who she is.

This non-confrontational interaction has often been found to be the most successful with those with dementia.

Hello, Sylvia,

Your advice is sound, I think - and I hope your own situation is OK - I read your posts with great interest and total sympathy. I go along with Mum's fairy la la land versions of almost everything but issues with money and bills are harder to agree with!

My Uncle is 85, but has the energy of someone much much younger. The contrast between the two of them is startling! Conversations go like this:

G: "Well, D....., (to Mum) I've been reading on the internet various reasons about how/why we are happy and it seems it's all to do with neural pathways and receptors and also to do with our upbringing...blah blah etc". (Actually, my job is involved in training and development so I understand all this sort of stuff!).

Mum: "I'm happy. I go swimming every week. Would you like a cup of tea?" Mum's amusing (and in this case untrue) non-sequiturs have been a feature of our relationship with her but this one made me laugh, which I had to turn into a cough so as not to hurt her feelings.

Anyway, he's there until Friday so I'm more relaxed about her care and he looks out for her.

Susan

 

[Helena]

Susan B

My Mother had a pretty tough and raw deal from life and as a result was a very determined and opinionated person who had a crazy belief that "death would not happen to her " and that she was only "leaving her home in a box "

Up until the age of 85 she was pretty healthy and fiercely independant although had High Blood Pressure which became rather uncontrollable
However at 85 she collapsed over the table at a family gathering and had vomited and lost control of her bladder .......paramedics said her BP was non existant and she had had a mini stroke
The next day the Hospital Doctors DENIED this and despite "are you sure " from myself and sister they were adamant and wrote it up as a " stomach upset"

This incident was followed by other collapses some months apart all of which " were thrown over her shoulder " and mostly unreported to the family

From about age 87 she was clearly getting frail and alternately demanding and highly argumentative one week and OK the nextbut of course it was "never her" it was us who were awful

Its only now that I can piece together the full picture of the hidden decline of a VD sufferer

Her denial that anything was wrong , refusal to see doctors or take her tablets and her loss of acumen with money along with not recognising her dirty clothes or being able to deal with things varied from day to day and week to week although scarily she was still driving and there must be a few dented cars and upset folk around as a result

For about 18 mths before she died one often played "word games " to establish what she was talking about and she could not tell you the ordinary names of flowers that she used to know all the Latin names for !Plus her neighbours and various tradesmen all recognised her wildly fluctuating moods and abilities

It was only when she was found collapsed,naked and unconscious 5 weeks before her 90th Birthday and was taken to hospital where they diagnosed and treated her for pnuemonia and then did a CT scan that truth of multiple infarctions and cerebral atrophy emerged ........from therein she was virtually " out of it and wandering " and scored 0 on an MMSE
2 doses of C Diff and they were trying to find her a place in an EMI unit however 5 days later the C Diff overcame her and she died
The Consultant had given her a maximum of 1 year at very most from the CT scan
Personally I am furious with the original Doctors and also her own GPs whom I had phoned on 3 separate occasions in the months before she died

Clearing her house was the final proof of just how far she had declined and just how well she hid and denied her condition

I now have several friends going through similar scenarios and i reckon i can diagnose VD just from my experience alone

The pdf that ALzheimers Society publishes is OK to a point but IMHO it misses vital clues and details others see in VD patients

 

[Grannie G]

i reckon i can diagnose VD just from my experience alone

Moderator Note.

No member of TP has any medical authority to make a diagnosis, or claim to be able to make a diagnosis.

 

[jenniferpa]

Helena forgive me, but despite your experience, not everyone who has vascular dementia will display all the distressing symptoms you had to witness, and I think it would be extremely irresponsible of the AS to suggest that in their fact sheets. There are obviously a wide range of behaviours that occur: some people will have all of them, some won't and some will have some more than others, and I think that's about all we can be sure of. If, however, you really believe that there are specific facts that are not included in the fact sheets, I would strongly suggest you contact the society and make your point.

 

[Helena]

Point taken and I will plough through the PDF and send the society a few extras they could add based on mine and friends experiences .........because i read that pdf several times and there were many times when the description of Lewy Body was more apt

One thing is certain The Paramedics ,my sister and myself knew a darn site better than a string of doctors what was going on with my Mother and in my book the abject failure of those medics is indefensible

 

[SusanB]

Hello, Helena

Just logged on and read your response - thanks for putting in such detail, I hope that it didn't upset you too much. I don't blame you for being so angry with the medical profession and it sounds like you and your family went through a bad time. Truly I am sorry to hear that you experienced such grief. I know that all experiences are different, sometimes to a great extent but it seems that there are certain aspects in common with your Mum and mine which seem typical of vascular dementia. OK, I know I'm not medically qualified! (I'm an internet expert, doncha know)

The change of mood thing is palpable - Mum tells others that I interfere too much, that I boss her about, that I'm trying to take over and that I fuss too much. This view however changes by the week and sometimes literally by the hour or when the sun comes out from behind a cloud. Or if the day has a "y" in it. The other day she "couldn't cope without me".

I'm going to TRY to take a step back. Anyone tried this? How does it work in practice, when I get at least one phone call a day?

However...just had an email from the CPN and (drum roll...) she let him through the door for a second time. Hurrah/hurrah, joy unbounded, jolly dee and buy everyone an ice cream. All well on the medical side.

 

[Helena]

Hi Susan B

Posting the details of my Mothers illness and demise do not upset me ..........the denial by the medics , the lack of clear info on VD ,and the 50,000 ft i reached after every nasty/crazy phone conversation with her ( i lived 2 hours away ) is what upsets me plus the actual effect her denial and concomitant effects her loss of money acumen had over those last 5 years or so which solely benefited Gordon Browns coffers is what makes me madder than hell ..........She grew up with nothing , lost out on a scholarship to grammar school because her family needed her to leave school at 12 to work , was left on her own in 1952 to struggle to raise 2 small children when there was positively not 1p of benefits .....the effect on my sister and myself can never be resolved and so much good could have been done with what she had managed to scrape together if only she had been faced early on with a correct diagnosis .
I believe the shabby treatment of an entire generation of elderly people with AD or VD who are robbed of their homes or their dignity to pay nursing home fees or be fleeced by IHT is an absolute disgrace

 

[SusanB]

Can't disagree with that, Helena.

Radio 4 has been featuring the shabby treatment meeted out to the elderly, not just those with dementia (although that's very often the case) but the general standards of care available. It seems from reading these posts that care varies enormously depending on where you live.

Crikey, how depressing! And it's only Tuesday. And...I'm going to be 44 next month - how did that happen, given that I was only 28 a couple of years ago? I even started listening to Radio 2 a few years ago so there's no hope.

 

[Helena]

Susan

If you are only 44 I am guessing your Mother is no where near my Mothers 90 years
At least I did not have the care of young children/teenagers alongside dealing with my Mother but i sure know the Radio 4 feeling

 

[SusanB]

Mum's 83 - with her next birthday in August. I sometime think that I'm too young to be going through all this...

Anyway, I had a meeting with a counsellor from the Alzheimer's Society today (as u all know, they "do" all the dementias) and met a lovely chap. I guess I must have ranted on a bit, cried a little tiny bit, forgot things, remembered them again and generally intimidated him but it was great. He will be contacting the CPN, who has seen her this week, for an update and will get back to me next week.

One of the issues with my Aged P is that she "presents well" and is frequently able to fool several people within the medical profession/caring sector (GP, social care worker, CPN possibly) into thinking that she is a lot more capable than she actually is. Quite an achievement: I'd love to persuade people that I'm brilliant but I keep thinking that "I'll be found out one day". Hmmm....psychiatrist's couch for me, I think.

She is a lot happier this week as her brother is visiting and AT LAST my brother/the gold balls himself is going down to see them this afternoon.

I know he didn't mean to offend me but last night when he called to discuss thing and how Mum says nasty things about me to other people, is totally manipulative etc, he implied that she wouldn't get away with it with HIM or my older sister as they weren't "weak"!...I of course took him to task about this tactless comment (and of course wrong!) and he backtracked considerably. I know I'm a softie but that's because I care. i don't like to see her lonly and depressed. However, if she's rude to me I tell her that she's hurt my feelings - and I don't let her get away with lying.

Blimey - famiies. Can't live with them, can't kill them.

 

[Helena]

Sounds like yet another trait of VD

My Mother would slag me off over everything ......nothing i ever did was good enough ...my sister was perfect ........boot on opposite foot if she was talking to my sister though

Neighbours got the same treatment as did the wonderful girl who did her garden ......according to Mother she was a rubbish gardener yet i know she was fantastic and also exhibited at RHS shows too

Manipulative ,nasty , secretive oh the list goes on .......hence why in her latter years i reached 50,000 feet and needed a very stiff drink after every visit or phone call

 

[SusanB]

Yes, you're right about the need for a stiff drink. I was finding that my alcohol consumption was creeping up after each visit - a way of numbing and taking away what was happening.

This is still an issue (self-medication and all that)but I've started a healthy eating plan over the last few weeks and I'm doing quite well. The stress has led to more drinking which has led to eating more which has led to me being the heaviest I've ever been. The mortification and dread of socialising (not to mention not being able to wear my clothes) got too bad recently and I heard the "mental click" I needed.

So...we're swans on a calm water with all this turmoil going on underneath.

Your Mum's decline and personality changes sound similar, Helena. The Arch Manipulator p***** me off like you wouldn't believe. But then again, sometimes she's nice and appreciates me, you just never know who you're going to get - good cop or bad cop.

 

[Helena]

Susan

Sure sounds like our Mothers could be twins !!

Thankfully my drinking stayed well within bounds as did my eating .....just steam coming out of my head !

You have my full sympathy because at 44 i had 2 teenagers still at home and a husband suffering a chronic illness but working a 24 hr cover pattern 365 days a year........i had a full time job too and sure as hell could not have coped with what we were put through in her last 5 years .

I can only say that you have to stand well back from the situation and let events take their toll because thats the only way anyone will face the problem ..........if you dont then the next one ill will be you

 

[jimsandy]

SusanB

I am fairly new to this site, so hope what I have to tell you or say will help you. Our mom was in her own home and not caring for herself very well and was in denial that she had any health issues at all. That she could take care of and feed herself and take care of her house. While finally the police were called and she was taken from her home. It was the best thing that could have happened, as we could have found her lying on the floor hurt or worse and we would have felt bad. She was hospitalized and then put in a nursing home with hospital and courts assistance. It was quite a relief for me, as she was safe and being cared for like we wanted all along. I hope that something like this happens for you and be sure to have her sign power of attorney over to you, either before she does not remember or with someone present to help you. Your family member may not remember any of what is going on, but you know this is the best that it is going to be. So take time now to spend time with the family member. As later it will be harder to do so. Here for support and encouragement for you and others and to have the same in return. jimsandy