Relentless

k314621/

New member
Dec 16, 2018
4
0
How do people cope with the relentless toil of assisting a person with advanced dementia? Double incontinence, delusions ( i have just been propositioned by my own dad) providing constant reassurance of where dad is who we are, who the pictures on the wall are, telling them not to worry about their mother/ other dead relatives etc- conversations that take place about 20 times a day. Tonight dad refused help to go to the toilet and put a pad on to go to bed so at some point will need clothes and bed changing- hoping he wakes up in a more receptive mood- maybe at 1am/ 2am/ whenever. Tomorrow we do it all again. It is awful when instead of having the same conversations all day you hope for a day when a realative sleeps most of the day instead so that you can watch the tv without being asked whether the news is a hoax or why there are strange people in the room. I am probably coming across uncaring in this- generally the opposite is true. I constantly tell myself that it is the dementia and not dad. But so hard when a loved one clenches their jaw and is adamant that they are right and we are all trying to trick them.
 

nae sporran

Registered User
Oct 29, 2014
9,213
0
Bristol
Welcome to TP,K314621/. You are not uncaring, that kind of constant repetition is hard work and the stress of looking after someone you love while they deteriorate is the hardest thing I've ever done.
There is a general guide to compassionate communication which may give you some survival tips https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/ if you have not already tried most of it.
Has your dad had a care needs assessment from social services ? HE and you may benefit from external carers coming in to help and taking him to a day centre will give you some respite as well as time to yourself for hobbies or socialising. I find it very helpful for both, and others have reported the same.
 

karaokePete

Registered User
Jul 23, 2017
6,534
0
N Ireland
Hello @k314621/, I can’t really add anything to what has been said already so just wanted to welcome you to the forum. You have come to the right place for support from people who understand so I hope that you will keep posting now that you have found us.
 

k314621/

New member
Dec 16, 2018
4
0
Yes some help, social services have visited and Dad goes to a Day centre 1 x a week, unfortunately he gets very grumpy about going and comes home grumpier saying he has been in prison all day. We are carrying on at present but think the day centre would be reluctant to have him extra days as it is for family benefit rather than for Dads really. We have tried carers in the past but as visits were quite unpredictable in timings often Dad up and dressed before they arrive, and although the few male carers available got on fine with dad he was not keen on younger girls. dad has now got up- happier mood allowed change of pad and back to bed. Just the unpredictability gets to you at times. Nightimes are a particular problem as you go to bed listening out and never know what kind of night it will be,
 

SpanishAnnie

Registered User
Apr 26, 2018
45
0
Isn’t it just one of the biggest challenges to handle, someone you love, someone that is special, someone that means the world to you...and you have to deal with all that rubbish that the evil dementia throws at you, you smile through it all, be super patient and beat yourself up in the process because you think you’re doing it all wrong !
Every day is a challenge as you mention, things are so unpredictable ...one day he love beans on toast, the next, you’re stupid for not knowing he doesn’t like beans on toast....one day he loves his new shoes as they are so comfortable, the next he’s asking you whose shoes have you given his because they sure as hell don’t fit him ...one day he take him to his favourite spot for a nice coffee, next time you visit he’s asking why have you brought him to this strange place....
You certainly have to grow a thick skin, find as much free time for yourself, get the external care that works for you all, try to step into their world and think how you might feel, not the easiest but can help, use their delusions to your advantage, eg, my FIL thinks he’s in a care home, always asking where all the other residents are and thinks there’s rules, he was desperate to know what time everyone went to bed, so we said 7pm, he thinks that’s a rule and sticks to it, and finally as you say remember it’s the evil dementia doing it’s worst
Good luck and take care !
 

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