My mother and dementia

My dad has dementia and is now being treated also for cancer.

My mam is 91 and for the past five & a half years she has been bedridden. Can't go to the toilet, can't feed herself, she also has macular degeneration so can't see to watch TV.......Not much of a life hey?
Mam does not have dementia, she's had two strokes, the 2nd one 5 weeks after the 1st. In a way the 2nd stroke has been a kindness because she doesn't realize she is on her bed 24 X 7. Mams memory has been affected, no short term memory, she thinks her dead friends & relatives are still alive which is wonderful. Some days mam doesn't talk at all, even if she does talk it's usually a one word reply, so sad. Mam does recognise peoples voices so thats great, she knows who I am.
Thank goodness I have nursing experience that has enabled me to keep my mam at home with us. We live in South Africa so I am very lucky that I have a wonderful care-giver that I have trained, her name is Bongiwe. If we were in England we wouldn't be able to have full time care. I could not manage without Bongi, she is with mam from 8am till 3.30 pm. It's not easy, I've cried buckets but I would do it all again, I don't want mam to be looked after by strangers, no one knows mam like I do, I want her in her own home. I know other people can't keep their parent at home (for lots of reasons) Thanks for "listening" Gogo.

Two important things:

1. If you are lucky enough to have elderly parents who do not have dementia, please talk to them about organising a power of attorney now. You will not regret it. If dementia strikes you will be able to take the right decisions for them both financially and care-wise. My Dad also created a joint bank account with my brother with £10k in it, so that after he died immediate bills were not a problem.

2. If your relative does unfortunately have dementia, then, for your own sanity, you need to move the goalposts in terms of expectations. I worked for many years on a dementia unit and the the thing that caused the most anguish among family was the fact that they were hankering after the person who was and basing their judgements and decisions on that. It is important to see the person as they really are NOW, and not who they were, which is gone. I know that sounds harsh, but I have seen so many people with dementia who can potter along quite happily as long as no-one expects anything of them or tries to slot them into the things they used to do. And I have seen them and the family distressed when they cannot live up to expectations.

I was distressed to see my Mum sitting around listening to Radio 2, rather than reading poetry, planning another outing or nagging Dad - but those were things that applied to the person she had been and not the person she had become.

You can make better decisions and be more at peace just by accepting that fact.

I meant, of course, that I don't think the piece by Michael Parkinson adds anything to the thread at all.

Absolutely agree with this.

Yes thank you i am only just feeling good again,and I have booked a course of yoga,still miss my dad though,and still feel guilty!

Yes I agree.

Thanks for sharing that with us kelpie- it does help to talk.It has been sad to put my Mum into care and watch her succumb to dementia but I know I have been very lucky in that she has become happier and less caustic.As you say, it manifests itself in many different ways.

My Dad had dementia and my Mum was his main carer, although professionals were involved, and we visited regularly from afar, and spoke to Mum daily. We were also in the process of moving them over to us.
My Mum got very frail, but wanted to go on looking after him for as long as she could. She started to have falls and after a particularly bad one, we had to close down their house and move Dad into Care and bring Mum back to live with us. She couldn't walk and was in agony. She had a fractured spine and pelvic fractures. It was only then that she let slip that Dad had been pushing her over, but she was too proud to tell anyone.
It still haunts me, why didn't anyone appreciate what was going on, I still feel as if we all let her down badly and obviously as her daughter I still blame myself for not making the connection.
She never physically recovered and her dementia started around that time, we nursed her for a year and then she too had to go into Care. it was heart breaking. The only good thing was that she no longer remembered what had happened.
Dad died very soon after and Mum the following year.
It's not easy baring your soul, I feel that I'm letting both of them down by posting this ,but this aspect of dementia isn't often covered. Dementia manifests itself into many different behavioural patterns , my Dad got violent, my Mum was quiet and peaceful. Expect anything and reject nothing as possible, is my advice...
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Part of the problem with dementia is that those who are afflicted by it are not able, because of the nature of the condition, to be good, forceful advocates for themselves and fellow sufferers. Those caring for close relatives are not often in a position to participate in debate and discussion because of pressures on their time and nervous energy and so their needs, opinions, suggestions go unheard and unrecognised.

[^An organisation for carers used to host a monthly 'support' lunch in our premises and it was obvious that those most in need of the 'support' were unable to attend regularly because they could not leave their relative unattended nor bring them along^.]

My annoyance with the choice of SIR Michael Parkinson as a spokesperson is that, as a rich person in good health, he cannot possibly know the half of it with regard to either being solely responsible for someone with dementia or of trying to find appropriate care for them when you are not in a position to pay for such care. Dementia does not arrive like a bolt from the blue on a level playing field but rather progresses insidiously into what may already be a difficult situation due to ill health, disability, family disputes, divorces, debt. The person charged with either caring personally or finding alternative care will almost inevitably have other problems in their life, other caring and financial responsibilities and will undoubtedly feel guilty that they cannot provide everything that is needed to do the best for their relative.

Drhookfan6, you have my sincere sympathies. Twelve years of caring will take a huge toll on you. I was a basket case after barely 2 years and that was with some residential respite (though that was very very difficult to find). Get some support for yourself if you can, maybe a Dr can help with some of the accumulated stress. I tried yoga for a while and some stress coping sessions but to be honest its just time elapsing that is whats needed. Take good care of yourself and give yourself time to recover. I am not at all sure the powers that be really know how much we have to go through.

I have just been trough 12 years of hell with my father,I am still stressed even though he passed away in April. Families should not be left to care,the mental strain is too much as you are emotionaly attached. our government is a disgrace
they are closing down all facilities,the care homes are Dire with untrained staff and disinterested managers,god help people with dementia.

My Mum has just been diagnosed with dementia. My Dad is her main carer and it has been a battle to get Mum diagnosed as having Dementia. She was diagnosed as having a stroke and this has given a smoke screen to anything else and she and Dad thought she would get better. Dad is also ill and only now after 18 months we have got some help. I tried helping, as care is my profession, but it become too difficult for many reasons but mainly because Mum thought I was the cleaner and told stories about me to Dad. Since I stopped Mum knows who I am, but it so hard seeing Mum I knew leaving us. The whole thing has been frustrating, painful and very worrying. You are told to tell GPs but if the person keeps saying nothing is wrong, your completely stuck.
I agree with Granny23. While profession carers are being made redundant and money for care being reduced it sounds like cheap way to give care, which will be done with much good will I am sure but could lack support or monitoring. I get confused I was required to train to a high level to do the work I do and now it seems this work can be done by many well meaning volunteers or left to be cared for by families. This could be well be my future.........maybe those making these plans should think of this too.

My mum has had dementia for some 20 years; she is now 98 and a very fit woman but no memories and no social graces. I tell people my mother left a long time ago!
I would agree with Granny23 more needs to be spent on research otherwise we could end up with a country run by... it doesn’t bear thinking about.

Agree with you granny23.

Don't think this very bland and emotionless piece by (when did he become a 'Sir'?) Michael Parkinson will attract many Friends to sign up to the campaign. When you compare it to Ben Fogle's article about his dog (qv) - which had me in floods of tears - it just does not do justice to the awful reality of living with dementia, either as the sufferer or their carer(s). I am not at all convinced of the usefullness of this initiative. I think any money available would be better spent on research, support or respite for carers who are daily under intolerable pressure.

Oh tanith that is heartbreaking,poor vulnerable lady feel really choked by your post.
Our friend had Alzheimer's and I used to visit her,she thought I was her mum,and used to cry,she cried also for a man who said he cared and cleared her bank account and left her to die confused and in debt still calling his name,I got him prosecuted with fraud you are right it is heartbreaking for you and for your auntie and my friendxxxxxxlove nellie

I used to visit my elderly Aunt in a lovely care home the staff seemed really kind and caring, till one day I was visiting and lunch was ready and they were gathering everyone up to eat it was then I realised that they weren't even calling my Aunt by the correct name , she had an unusual Welsh name and they just pronounced it how they liked , they had never asked how it was supposed to be said and I'd never thought to tell them as I assumed they knew.. ... this poor confused lady answered to whatever they called her... I felt so dreadful..

My lovely auntie has dementia . Its a terrible disease she talks none stop she only needs someone to listen. When shes telling me something she laughs and crys she still feels emotions .Its such a shame my auntie is still in there somewhere.

We have already had quite a long discussion about it - do keep up, GNHQ!

Yes could not agree more. We realized FIL had been 'hiding' his dementia. His intellect enabled him to talk with real authority about everything whenever we visited him. It was only when he went into hospital and we were visiting twice a day that we realised it was all repetition and vague comments that he felt suited the conversation. As soon as you suspect a loved on of having thise problem its a good idea to increase the visits and keep a diary of what is said and done.

My late father also had dementia which was not picked up for some time. My parents lived a distance away from the rest of the family, and my mother flatly refused to acknowledge that anything was wrong, even though my husband and I were getting increasingly concerned. Meanwhile he took out loans, cleared out all their files and had, literally, bonfires of all their paperwork. By the time I was "allowed" by my mother to get involved, everything was in a terrible mess, there was no paperwork whatsoever, and it took me months and months to get things sorted out. So my advice to anyone who suspects a family member or friend might have this terrible disease is to be very firm, and get them assessed a.s.a.p. (If they are not agreeable, which often happens, then ring their GP to tell them of your worries - the GP cannot report back to you directly, but making him/her aware of your worries is essential and very useful.) The earlier you can get help and advice the better, for everyone involved and, most of all of course, for the sufferer.