Do you (sadly) have experience of dementia?

[Zoisrus]

yorksG. My experience with social workers, the head of phsyciatric team here (Dr.), and mother's own GP have not in one iota encouraged my mother to accept help. In fact they have from the outset offended her and made her automatically "on the defense" so her ingrained answer to all offers of help is "I can manage". As for "would you want your health discussed with other family without your consent" the said social workers, Dr. et all have all contacted me without my prompting to do just that. They admit on one hand my mother's mental health is beyond her being able to make her own rational choices, yet on the other she can utter 3 words "I can manage" repeatedly parrot like. One thing that has disgusted me is the way they speak to mother, well not speak TO, but OVER her, to me in her presence. As though she is invisible. Or when they do speak to her, they shout, VERY LOUDLY, now mother is not deaf, and she does speak ENGLISH. And that to her with what dignity she has left to recognise is insulting.

 

[Lobelia_Overhill]

You poor old thing! What a dreadful situation - with no one to listen or support you - they all need a good slap

Is your Mum still alive?

And I'm sorry to hear about your health - I'd put you on Red Cell and turn you away for a while for some peace!!

Seriously, I'm not surprised. Been exhausted and worried all the time (and angry because of your brothers etc) is bound to take it's toll on your immune system...

*hugs*

thanks yes my mother is still alive, she'd a fall recently and cracked a rib, so I'm tied to the house 24/7 until she's fit to be left alone, which means with that and my having had the flu I've not been able to visit - much less ride - my horse for about a month now

There ARE issues of human rights involved with the right of people to refuse help within the home. There are also issues of confidentiality and the LEGAL requirements of the care teams to not take the word of family members.

So how are people with dementia supposed to be treated by a doctor? They're not going to go to the doctor and say "I'm developing dementia", and it's not like I was telling the doctor about a total stranger who I'd passed in town, I was telling him that my father who I was Primary Care Giver seemed to be going senile. the doctor wrote a prescription for a med and never even looked at my da! I still don't know what form of dementia he had, and got no help from anyone with looking after him - until someone decided he needed help getting washed and dressed. The Home Helps didn't even notice he was senile, because he never 'acted up' in front of them.

 

[conniegirl]

I have quite a bit of experiance with Dementia, my nan developed alzhiemers and we currently own 2 residential care homes, one home is duel registered as EMI.

we care for these resident as though they were family but do recognise that not every home does as well. The industry certainly isnt helped by scare mongering documentaries showing people restrained in chairs and saying that we are torturing elderly residents. Sometimes restraint is a nessecary evil. It is not something we do willy nilly, it is something done only as a last resort, normaly with full doctor, social worker and family aproval and normaly only because the person being restrained is out to hurt themselves or others. We have to go through a whole deprivation of liberties procedure and paper work first.
Just like we cant stop one resident smoking dispite the fact that she has so far set herself on fire 3 times in the last 4 months, she cant recognise the pain and we are desperately underfunded and cannot afford to have someone sit with her every time she wants to smoke, as often as time allows we will supervise her smokeing and we do try to prevent her smoking where she cant be seen by others.

Social services pay us less for 24 hour care, full laundry facilities, activities, entertainment, 3 meals a day, enough tea to sink a battle ship (last year for 36 residents we spent £8k on tea bags alone), maintenance of sensory gardens, escorted trips to doctors etc then you would pay in a B&B for 1 week. The current rate for EMI patients being less the £400 a week, find a hotel that can give you all those facilities for that and I'll give you a medal!


Good on you for bringing this horrific disease to the attention of the public, but please dont turn this into a care homes are evil witch hunt. We are heartily sick of it and all witch hunts succeed in doing is driving people like my mother who genuinely cares for each and every one of her residents out of the business (after 20 years of hard graft we are getting out of care and going for something with less stress, less pressure, less paper work and one where we are not branded as evil granny farmers for doing the best we can for our residents)

Twizzle, funding is there, you just have to know how to access it. If I can help at all let me know.

 

[Mrs B]

Conniegirl,

There are, as you say, good homes and bad homes - your families' ones sound great - looking after each person as an individual to be treated as one of the family. Dad's nursing home too was great. They treated him with respect and always welcomed me with a chat and a cup of coffee, however many times I arrived. They went along with my wishes that Dad believed this was a hotel where I too lived. That is exactly what he did believe and it made him happy - eventually, he thought my late Mum lived there too, and his parents! Wonderful.

This is not in any way, shape or form a care home 'witch hunt'. This is simply a film to look at people's experience of dementia and look at the way that SPECAL's method has helped bring contentment to both sufferers and carers in the midst of this awful disease.

 

[Angua2]

I have read this post with interest, as my mother is showing early onset of some form of dementia. My father has spoken to the doctor who has dismissed the idea, as my mother "remembered" and answer that he hammered into her head and then re asked 3 minutes later, she struggled but managed to remember.... if he had asked 5 minutes later, she would not have remembered.

I have to say I am worried, as I am 200 miles away and my father is on his own, with my mother who is convinced my father is persecuting her. My father, who is in his late 60's has no means of getting her diagnosed or any form of support. At the moment he is happy to keep going, but as soon as he says the word, I will have to move back.

 

[Mrs B]

Hi Angua2

I'll pm you.... and I'm sure others here will be able to offer their advice to help you and your Dad formulate a plan....

Kate

 

[Zoisrus]

I wish you well and you have a hard road ahead. If your mother's GP and local dementia team is anything like the ones I have had to deal with over the past 8 years then it will be stressful, tiring, and at all times you will be banging your head against the proverbiale brick wall. What you say about your mother's GP and the reaction your father's concern over her memory loss echoes my experience.

It took from 2001 until May 2009 before my mother was even looked at for dementia. Despite the fact that her hallucinations had been so bad for some time (3 years) that the local police has a whole file on her calling them about people in her house at 3.00am, aliens on her wall in the living room, people sleeping in the street in beds, being abducted and drugged. The police had contacted her doctor numerous times but still nothing was suggested or offered despite my asking. In fact the policeman assigned to mother's file came to see me as he was so concerned because in his words "her GP was not interested at all in our report on her hallucinations, and our worry that she is a danger to herself, the GP just said mental health was nothing to do with the practice".

It was not until May last year when mother was admitted to hospital for a wedge facture on her spine and one nurse was so concerned about her memory and hallucinations (they actually had to secure her to the bed) enough to contact the resident phyciatric team. Since then they have taken an interest but treated mother like she is a cretin. Now mother may not remember how to write her own name or where she lives but she is a person, and her memory has left not her intelligence, nor her dignity. She is treated and spoken to like she is a 3 yr old, when she cannot remember what day it is there are gasps "Oh Mrs so and so your memory IS bad". Well good grief I cannot remember what day it is sometimes! What is this - a circle or square? And other questions in a similar vein. Now if only they would speak TO mother and explain that she has memory loss, the therapy or treatment options, the stages of the disease instead of treating her like she is an idiot.

 

[MinskiKaii]

My Dad and Aunt both have Huntington's Disease which causes among other problems eary onset dementia. My Dad has been ill since his early 40's, for nearly 20 years. His Mum and Uncle both had it as well.

He can't do anything at all. Just watch telly. We are lucky to have carer in every day, so Mum can get support and still work part time. I have to say, his care package only ever got increased when there was a crisis, like Mum ending up in hospital from being so run down from caring for him.

There is one thing we have learned over the years, you have to fight for ever bit of support. So if anyone needs any, make sure you keep hastling and pushing, or you'll go without.

 

[Mrs B]

Please, my dear HHO friends, forgive me for bumping my own post.

We are working away towards our target to making this film. We have raised over two thirds but we do need the rest to make it a useful film. If you want to know more, please go to www.understandingdementiafilm.com

If you can spare even a few quid to help us it will be so gratefully received. Dementia is something many of us dread (bit like colic with lami as a side effect!) but the sad truth is that many of the people on this forum will develop it at the end of their lives.

This charity we support and are making the film for has worked out a way to make an awful diagnosis bearable for both carer and sufferer.

If you don't already know, I became my Dad's carer shortly after he was diagnosed with a form of dementia, after my Mum died in an accident.

Again, I do apologise for bumping this and for asking for help, but the cause is a good one...

Kate
x

 

[MagicMelon]

What makes my blood really boil is that she gets no funding for her nursing home fees despite being diagnosed as mentally ill and unable to live at home anymore... it's disgusting IMO.

I totally agree with this comment. I lost my dad in January having battled brain cancer for 18 months - was absolutely devastating to watch. Anything that effects the brain is horrific. we were 'lucky' in that we managed to keep him in a very small local hospital for the last year although we were actually in the stage of being forced to move him to a nursing home at £550 a week. It was so unbelievably stressful for us, and the money side of it caused even more stress as we weren't eligible for any funding at all. I cant believe there aren't NHS nursing homes for illnesses like this. Expecting a family, although living on a decent pension - to pay around £24,000 a year for a home is a joke.

Zoisrus - I also agree with your irritation of people speaking OVER your family member. The doctors and nurses did EXACTLY the same with my father. They would literally discuss how ill he was with him sitting right there - it was so undignified and I had to take them out of the room several times to say how disgusted I was they did so. They always apologised and understood but christ, they must do it all the time.

 

[Zoisrus]

On the topic of funding that does make my blood boil. I have had to put my own business on hold to look after my mother. I asked a couple of months ago when mother was in hospital after another heart attack if she could go into the local EMI geriatric unit for a couple of weeks to rehab herself, respite for me. Even the nurses felt she needed this and was not fit to go home. Well it was refused unless I paid £1,400 pw !!! Yet you read about these benefit families given funding of £150,000 pa. We know an wealthy landowner (high ranking titles too) who hosts huge dinner parties for Europes royalty, races cars, yachts, owns several thousand prime English countryside acres down south, 2 gamekeepers on the estate, full staff in the house including cooks and butlers. And they claim and get full child benefit for 3 children!!! My mother and late father payed UK taxes all their lives, fought for this country in WW2, and yet now when care is needed is it turned down or treated with disdain. DISGUSTING.