New to the forum: the daily struggle

[twinklybongle]

My 80 year old father was finally officially diagnosed with mixed dementia earlier this year, after about 6 years of this awful disease creeping up on him. He and my mother live in their own home, with no outside support, because my mother is very reluctant to tell anyone, or ask for help. She can hardly bring herself to use the D word. She is trying to keep my Dad to a daily routine, because if she wasn’t there to look after him, he couldn’t do much more for himself than use the toilet (and it’s a big positive that he can still do that). With prompting, it takes all morning to get himself showered and dressed, sometimes he’s in the bathroom for 3 hours. He gets very angry with her if she checks on him, which upsets her, and makes her anxious and frustrated. He has no short-term memory, just can’t understand why he needs prompting.

It has become the biggest issue in my Mum’s life, she spends every morning in a state of high anxiety (she is on medication for anxious depression), because she doesn’t know what he is actually doing in the bathroom and if he might hurt himself. Me and my siblings (who all live 2 hours journey away from my parents) have run out of ideas. She knows that asking him questions like “how are you doing” makes him furious, she finds it very difficult to give him diversionary instructions like “it’s time for breakfast” because she’s never “told” him what to do in 53 years of marriage! One thing we tried suggesting was that maybe it’s not that important for him to actually have a shower every day, but breaking that routine made my Dad even more confused than usual.

The team at the adult mental health centre where he was referred by my parents GP for diagnosis, advised my Mum not to make everything a battle, but that’s what every morning has become, and we don’t know how to help.

Does anyone have any ideas, please?

 

[Wolfsgirl]

It sounds like such a strain for your poor Mum. If he insists on having a shower each morning then could she just leave him to it? Perhaps if the gp says it is ok to let him get on with it she will feel she has authoritative 'permission' and nothing she can say will alter the situation anyway. If he does have an accident, it would not be her fault and she can call emergency services for help.

It does seem to me he would benefit from personal care in the morning.

Has your Mum had a carers assessment? Perhaps speak to the gp about the whole thing. It would be terrible if your Mum started failing from all this strain and pressure...

Best wishes, Sharon x

 

[jaymor]

Hello Twinklybongle and welcome to TP.

So hard to find solutions when your Mum is wanting to hide her problems from outsiders and poor Dad has no idea he has a problem. Getting care in would be ideal but difficult if your Mum won't accept help and Dad does not think he needs help.

I am one who believes that a shower/bath is not necessary every day especially if there is no incontinence problem at the moment.

Is the door unlocked? If it is could Mum let Dad get on with it and just keep checking everything is ok. If stairs are involved this is not a good idea but if living on one level might work.

You will never change your Dad's perception of his managing, dementia is now in charge. I think your best chance of improving the situation is to work on your Mum. There is a lot of help out there if only she will allow it.

It is difficult and there are not always answers, there are times we can only do our best and pray.

I am sure there will be others along soon to offer some ideas and support,

Take care,

Jay

 

[CollegeGirl]

Hello Twinkybongle (great name ) and welcome to TP, although I'm very sorry that you find yourself in this situation.

My dad has a battle every day to get my mam washed and dressed, and it often takes until teatime. Quite regularly now he doesn't manage it at all, and she spends all day, and often the next day too, in her nightie, having refused to wash or dress at all during that time. She needs help to do it all, as she can't do it on her own.

Like you, I also feel helpless. He's tried everything he can think of, and also suggestions from members here, so I understand how frustrating it is. All I can think of, really, are the same suggestions from Jaymor and Wolfsgirl.

After a long struggle, my mam does now allow two carers to come in and shower her twice a week, so at least she gets that. If dad manages to get her washed in between times, this is a bonus.

Do keep posting as just getting it off your chest will help, and we do all understand as many of us have similar issues.

 

[twinklybongle]

Thanks for all your replies, I feel less stressed just starting the thread, and didn't think anyone would respond so quickly!

I'm going for an overnight visit later today, and will suggest (not for the first time) that she leaves him to it tomorrow morning, and see how it goes. He does still want his routine of washing and shaving and getting dressed every morning (we think!), the bathroom door is unlocked so Mum can go in, but even if she goes in without saying anything, on the pretence of getting something, it still makes him furious. We think he's just washing himself over and over again, until something unknown finally makes him stop, and the same with the shaving. Or possibly he keeps falling asleep on the chair in the shower. None of that really matters at this time of year, but I worry that he'll get cold in the winter. Needless to say, he's developed skin rashes, and the water and electricity bills are going up! On the rare occasion he gets himself sorted out in 20 minutes, Mum thinks he's "cured" then is even more upset the next morning when he's in the bathroom for 3 hours again.

We have tried suggesting that trained carers could come in every morning to shower him, or even 2 or 3 times a week, but Mum is very nervous about letting anyone in the house. It doesn't help that her anxiety is made much worse by the GP (white coat syndrome) and none of us have any confidence in him anyway. We have tried for years to get her to change their GP but this is just too much for her to cope with.

So yes, feeling very frustrated and helpless, it does seem like it's Mum that needs more help than Dad, as he is in blissful ignorance. But typing this and getting it all off my chest is definitely helping, any suggestions are really helpful, thanks again.

 

[jawuk]

Hi Twinkly, I don't have much helpful to suggest, but I do hope you can encourage your mum to apply for Attendance Allowance and the reduction in council tax as this would free up some cash to meet the increased water and electricity bills. Other than that try to get your mum to realise that there are worse things than protracted showers and that it would help if she could just take one day at a time. Referring to 'memory loss' instead of dementia might also be more acceptable. Otherwise I wish you the best of luck with a difficult situation :O)

 

[jalmaj]

Hi. The best way to get mum up, dressed and breakfasted is to tell her we are going out. To town or special place
By the time she has had breakfast she has forgotten! Advantage of alz! Some might say this is unfair but it makes my life a little easier to tell 'white lies'. I have so much guilt a little more does not hurt. PS. Do not use every day, just when I cannot bear it any more. I am human too.