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Its bloody hard!!!!

(11 Posts)
Ludoole Thu 27-Nov-14 21:29:26

Dad has gone downhill in the last few days sad
He doesnt know where he is and shuffles around muttering incoherently...
Today i stopped him from washing his hands in the toilet...

Its so bloody hard!!!

Selks Fri 28-Nov-14 01:22:41

Didn't want your post to go unanswered. Sorry to hear about your Dad, it must be heartbreaking for you. Do you or him have any support?

DixieNormas Fri 28-Nov-14 01:25:48

That must be really hard �� are you caring for him?

Ludoole Fri 28-Nov-14 02:44:04

I help my mum to care for him.
We have no support which is hard.
There are family members who could help but they seem to have disappeared....

I am there every day but in all honesty i dont want to be...
I split my time between dad who also has prostate cancer and my fiance who has stage 4 metastatic bowel cancer.

AcrossthePond55 Fri 28-Nov-14 04:00:01

Yes, it is hard. It's damn hard. And damn this fucking disease to hell. It robs us of our parents, spouses, loved ones. And robs them of us too, since they often don't know who we are. I get so angry sometimes at the unfairness of it all.

My thoughts are with you. Take care of yourself, too.

ishouldcocoa Fri 28-Nov-14 04:28:51

I have a Dad with dementia, too. Is your Dad on medication? Does that help at all? Or is he like mine, where the medication has worked for about 5 years and it's now just slowing down the inevitable?

It's so, so hard. I've 'lost' my father, but can still give him a hug. It's a terrible feeling.

Have you or your mum been to the GPs to find out if there's any help? My Mum gets support (but not actual physical help) from the surgery, and she gets support from a local carers group, too. I try and do a day a week to give mum a bit of time off.

The government seem to be doing nothing about providing help for carers at all.

You are doing so well; you have heaps on your plate. Here's a hand to hold. Xx

Ludoole Fri 28-Nov-14 10:50:25

Ishould Hes on memantine but thats all he can take due to other health issues. So sorry that this disease affects other people too.

CMOTDibbler Fri 28-Nov-14 12:21:23

If your dad has gone suddenly downhill, its worth a GP trip to check for a urine or other infection as it can make dementia much worse.

Has your mum had a social services assessment to see if she can get some respite carer help? Or use his Attendance Allowance to pay for a private carer for a few hours a week - my dad has found paying for care much more acceptable when thinking about the AA and council tax rebate being the goverment paying for it

ishouldcocoa Fri 28-Nov-14 17:23:52

YY to attendance allowance and some paid for help. My mum has also had a cheque to spend on a break for herself from the local carers association.

My DF also has multiple health issues which makes looking after him harder as he's not able to express himself properly when someone asks about his pain. If you ask the question the 'right' way, you get a better answer from him.

jfots Sun 21-Dec-14 10:27:11

All of the above sentiments shared, most important thing to reitterate is get some help. Day care gives you a break and him an environment to support him, dont try to cope alone. My dad passed away 4 weeks ago, sitting here I may cry but as I am struggling to do that it would be good, dementia is gut wrenchingly painful and you sound as though you have other stuff to cope with. Ultimately we had to put dad into residential care as the pressure was going to kill my mum (awake 24/7 behaviour unpredictable switched things on, drank a whole bottle of neat lemon squash and was doubly incontinent, the list goes on and on) we live with the guilt that he was not at home but they cared for him better than we could as they were the experts on dementia but you be the expert on your dad. I also take the point about family and friends disappearing, my mum was told by a family member dad needed to "go for lots of walks and he will be fine", people didnt visit, my mum got bitter and difficult but I couldnt really blame her this is a no win situation even when he went into care but she visited daily and was exhausted, the most important advice I can give is this a long very painful journey with no happy endings only snippets of laughter and pleasure which you learn to treasure. The last time dad was "with it" before he passed away I was struggling to feed him pureed liver, disgusting, he looked at me with a twinkle in his eye and informed me the food was b......... awful, then asked "you got your dog with you?" I will treasure that moment for ever as it was so lovely to have him coherent but also meant he knew who I was as he adored my dog.

I dont know how to finish as Merry christmas wont do, good luck is wrong so all I can say is very best wishes AND PLEASE GET HELP AND SUPPORT, you will probably need to make a fuss to get it!

PacificDogwood Sun 21-Dec-14 10:38:05

It is awfully hard to look after somebody with dementia.

I agree with CMOT wrt to getting your dad checked out - if his confusion as suddenly deteriorated he may just be brewing an infection or other; bladder infections are a common cause for this.
Having said that, some form of dementia like vascular dementia tend to deteriorate in sudden 'steps' sad - it's such a cruel disease.

Also, do go out of your way to find help - often it is not offered readily, but some help and support is out there. Speak to your SS Older People's Team: even if your mum does not wish or need carers they can advise on other organisations that can help. Consider a Day Centre for your dad to go to once or twice a week to give your mother and you a break.
Have a look on the AlzheimerUK web site - lots of information on there.
There are local groups etc you may be able to access - like I said SS and your GP's surgery should be sources of information. Does your GP have you and your mother registered as a 'carer'? This will open up some services to you, like flu vacc etc.

Please encourage your mum to accept help - plan for the worst possible scenario in terms of services, and then hope for the best. Services that you know where they are and how to access them but then never need are a Good Thing to know about - much better than to arrive at crisis point without any help available.

My MiL died last summer aged 85 - it was probably her lung cancer that killed her, but the dementia had become quite severe. We all felt that it was a blessing that she also had a physical illness IYKWIM.
My gran died 2 days ago, aged 101, having lived with dementia and very severely affected towards the end, for 15 years. It was not a pretty sight for the last 5 years or so and we all cursed her health heart that just kept on going sad.

Please get help in place - nobody can do this on their own for a long time.
thanks

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