any full time carers for Dementia out there ?

[peanut]

this really is a wicked disease. My Father is now suffering with Dementia which is particularly unfair as several years ago he nursed his second Wife through Altziemers .

One of the biggest problems is that at first they are perfectly lucid . My Dad can talk about anything and hold a pretty intelligent conversation with you about his predicament.His long term memory is still very good although he now mixes bits from one story into another. His account of the D-Day landings is awesome and fortunately i have now started to record them for posperity

The problem is with 10 minutes he has forgotten every single word of the conversation.!

Consequently you spend an enormous percentage of your time recounting previous conversations and things you have done a few minutes ago. ie 'have I taken my pills yet'? 'I'm sure that I have some pills to take?' ...'I keep thinking that I should be taking some pills?'....aghhhhhhhhhhhhhhhh

He is so aware of what is happening to him and that he is not at his own home, yet has no idea he has been with me and Mrs P for four weeks and is shocked when I tell him.

My recommendation to anyone out there with elderly rellies is get them to move home closer to you so that when the time comes to look after them you can do it whilst they stay in their own homes. The upheaval of losing his home is killing my Dad.

 

[magnatom]

I feel for you peanut. It certainly is a horrible disease. I haven't experienced it personally, but I work in a department where dementia sufferers come to have scans. It can place a terrible strain on families.

Unfortunately my mother is suffering from Motor Neuron Disease (MND) which acts in a different, but equally upsetting way. It began with my mother's speech slurring and soon she lost her speech and ability to swallow. My mother was always a chatterbox. Now she is loosing power in her legs, arms, neck etc. Unfortunately for her, she is fully aware of what is going on.

I am not the main carer as my sister still lives at home (I have a family to look after and provide for as well). It is placing a terrible strain on my sister. Whilst we try our best to help out, we can't always be there at 3am in the morning to help my mother move in bed etc.

Just make sure you get and accept all the help you can get. As someone who works in the NHS, I understand that those who shout the loudest get the most help. Keep on asking for what you need until you get it.

 

[postman]

He's a lucky dad to have such a great son and d-i-l.

Hope you find the strength to deal with it all .

 

[ChrisKH]

My deepest sympathies. My father had a form of dementia that hit him like a truck and he stopped talking sort of overnight. He didn't talk much anyway (Mum always spoke for him and over the years he had just accepted it) so it was probably a while before we noticed proper. So it was very difficult, if not impossible, to communicate with him and right up until he died we never knew how he felt. My advice is to make the most of the times when he is lucid.

Had any thoughts about your father's long term care? As a family we wanted my father to remain at home as long as possible and were going to pay for 24 hour care but the local authorities said it wasn't in his best interest and he would be better off in a home. He was placed in an excellent care home, close to where we lived and we were extremely lucky as it was 100% funded and the staff were like family. I know it can be an entirely different story though.

 

[peanut]

thanks Mags. Sorry to hear about your Mum. Its the fact that they are aware of it that is the worse bit.
I know I have a lot worse to come ,yet I feel out of my depth already.

At the moment I'm just fire-fighting form day to day. It has taken me 4x weeks to get to the bottom of his financial affairs and i'm not done yet.
I've applied to register Power of Attorney but it takes 6-12 weeks so in the meantime it makes everything difficult.

We have to go back to his home tomorrow in London to collect stuff, clean up and arrange for sale and I'm dreading it. He will be very upset and I won't get any sleep. I also get profoundly depressed when in a city environment. No green you see.

wish me luck.

 

[peanut]

He's a lucky dad to have such a great son and d-i-l.

Hope you find the strength to deal with it all .

thank you Postman. I hope I'm up to the task

 

[magnatom]

wish me luck.

Good luck.

If you haven't already have a look at the Alzheimers Society web site (as far as I am aware they aren't picky about the particular type of dementia that your father has).

They can offer help and advice as to what help is available to you. There is a lot available and it really can make a huge difference.

 

[peanut]

My deepest sympathies. My father had a form of dementia that hit him like a truck and he stopped talking sort of overnight. My advice is to make the most of the times when he is lucid.

Had any thoughts about your father's long term care? .

Thank you Chris . My Father had his second Wife to make all decisions so we didn't see it coming either.
I haven't informed the autorities yet. Thought I'd wait until I get power of attorney PW first which will give me some say in the matter.

We have an excellent care home across the road but at £600+ per week its going to seriously deplete his money. That wouldn't include any nursing care.
I am going to try care for him at home as long as I can at least as long as he is aware of it anyway.

I know eventually it will overwhelm me and will possibly put my relationship with Mrs P at risk too.

Its the sleepness nights I dread and I suppose the bedbaths although I occasionally strip wash him now as he doesn't bother to wash properly.

 

[Campfire]

Peanut, I can completely understand how you're feeling. My Dad, who died last year aged 88, suffered from Dementia which developed gradually after he fell downstairs and landed wholly on his head. A weaker man might have just died straight away but he has had so many spills due to coming off his bike over the years. He was cycling until 6 months before he died, going around the block so to speak about 5 miles but forgetting which way to turn. Luckily my Mum was able to go with him as they were both lifelong club cyclists.
Mum looked after him & in the end had to give up & he went into a home. He just went downhill after that & we think he fell a couple of times, ended up in hospital & spent the last week of his life in a high dependency ward. It was a blessing as he didn't know anyone by that time.
Previously he had been taken into hospital for a minor problem & there was sheer neglect in that ward. My mum took him home after a big row with the ward sister.
Until the day before he went into the home, he was walking upstairs on his own, & fairly active although he had difficulty getting up out of a chair. He sometimes used to get out of bed in the night and fall & Mum used to have to get neighbours to get him back into bed.
Our house isn't large enough for even one extra person, let alone two, so you are lucky you have the space.
I must say to you please don't forget to look after yourselves, keep active, try to get someone in to give you some time off to yourselves. It is a tremendous burden, presumably you are a similar age to me and the difficulty with having children young is that you are no longer young when they begin to fail.
I'm not religious but do send you my heartfelt wishes to keep you all safe.

 

[accountantpete]

Have you approached the county council to see if they can offer any help Peanut?

 

[ChrisKH]

Thank you Chris . My Father had his second Wife to make all decisions so we didn't see it coming either.
I haven't informed the autorities yet. Thought I'd wait until I get power of attorney PW first which will give me some say in the matter.

We have an excellent care home across the road but at £600+ per week its going to seriously deplete his money. That wouldn't include any nursing care.
I am going to try care for him at home as long as I can at least as long as he is aware of it anyway.

I know eventually it will overwhelm me and will possibly put my relationship with Mrs P at risk too.

Its the sleepness nights I dread and I suppose the bedbaths although I occasionally strip wash him now as he doesn't bother to wash properly.

Best of luck. You might want to make enquiries on funding. My father escaped having to pay personally for the care home for some obscure reason. I'll see if I can find out why it was.

 

[peanut]

Have you approached the county council to see if they can offer any help Peanut?

not yet Pete. Don't want to complicate everything at the moment I am only just about coping.

I was already looking after mrs P who has a 7 day a week 11 hour a day job , so i was already doing all the shopping, cooking , cleaning, laundry etc.

I'll wait until i return from London then I'll contavt Social Services but as My Dad has his own home I expect he will have to pay for his care anyway.

 

[Browser]

I feel for you Peanut. My grandmother suffered from it for years and she was never really sure in the last few years who I was. My father's death in '99 made it worse as my mum ahd to tell her several times about it and it still never really sunk in.
My wife had to watch her grandad die slowly from Alzheimers, going from being an active bloke who gardened and did DIY to a shell, sitting in a chair doing repeated finger/hand movements and not knowing who anyone was. I've already told Mrs B to wheel me over a cliff if I ever get diagnosed with a dementia-type illness as I'd hate the loss of my mental faculties (such as they are).

 

[numbnuts]

I looked after my mother for 7 years and it was soul destroying and I had to put my life on hold as it was 24/7, so my advice to you is try to give yourself some time you do need it.
Best of luck

 

[peanut]

Peanut, I can completely understand how you're feeling. My Dad, who died last year aged 88, suffered from Dementia which developed gradually after he fell downstairs and landed wholly on his head.

I am sorry to hear about your Dad and that at least he was able to continue cycling. My Dad is the same age. Unfortunately he has never had any sort of interest sport or hobby . Consequently he sits around feeling sorry for himself and mulling things over .I can't even persuade him to try something like photography.

I am trying to get him into a couple of local day care centres so he can mix with others and hopefully develop some friendships and activities.

thanks for your well wishes and support