Repetitive routine contains problems

[RNcaregiver]

@Linda 53 @jac69 i relate to you both. i don’t see ppl talk much on here about it, but dealing w/ a PWD that has a short attention span (ie answering the same questions a million times a day) is prob the hardest to deal w/ being a 24/7 caregiver. it def takes a mental toll. i was starting to feel like i was going crazy, literally repeating myself every 2 mins. any human being would lose their patience after dealing w/ that ALL day EVERY day. taking time for yourself is a must for your sanity!

 

[Lawson58]

HI Jac69 I am so pleased that i found your post I feel exactly the same as you. I tell myself not to lose my patience but when I have to repeat myself constantly, within a short period of time my patience goes. I feel so guilty. I see People on tv whose partners have Dementia and everything is lovely and they are so patient and understaning I just wish I was like that but I am not. Its such a lonely existence. I miss having a conversation because its almost impossible to converse anymore. I really fear for the future.

There is a movie called The Father with Anthony Hopkins which I think handles Alzheimer’s very well. Note cute and sugary at all.

 

[Newplodder]

Been there and done that only to discover that I was quietly losing sight of myself, disappearing down the plug hole of insignificance.

Just had to comment that this is such a striking and appropriate statement!

 

[Lawson58]

Just had to comment that this is such a striking and appropriate statement!

🫶

 

[Eddcorner]

Ha! I doubt that is what it is like most of the time even for them
As for TV depictions of dementia, its pure fiction!

Welcome to a crowd of people who are honest and say what it is really like
xx

Ditto on the TV representations of persons and their families challenged by the brain fog thingy!!

 

[Agzy]

Oh dear I say every morning I must try harder not to shout in sheer exasperation at my husband. It lasts 15 mins if hes lucky. He now has less than a 2 minute attention span I tried to get him to do a jigsaw for 2 to 3 year olds he couldnt do it. A 4 peice chunky wooden jigsaw. I just wanted 5 mins where I wasn't constantly being asked the same question over and over ad infinitum. I did manage to get him into day care last week from 10am to 5pm one day a week £75.00 beleive me it is worth everypenny and more to give me a break. The down side of that is it was such a welcom relief I sat and stared into space just enjoying the silence for over an hour then felt guilt for not rushing round cleaning everything while I had the chance. I will try to be more productive this week

With you here on the value of daycare even though the trauma before and after rubs some of the benefits it is somehow still worth it to know she is safe and well and doesn’t need me.

 

[BeeBeeDee]

Oh dear I say every morning I must try harder not to shout in sheer exasperation at my husband. It lasts 15 mins if hes lucky. He now has less than a 2 minute attention span I tried to get him to do a jigsaw for 2 to 3 year olds he couldnt do it. A 4 peice chunky wooden jigsaw. I just wanted 5 mins where I wasn't constantly being asked the same question over and over ad infinitum. I did manage to get him into day care last week from 10am to 5pm one day a week £75.00 beleive me it is worth everypenny and more to give me a break. The down side of that is it was such a welcom relief I sat and stared into space just enjoying the silence for over an hour then felt guilt for not rushing round cleaning everything while I had the chance. I will try to be more productive this week

You do well lasting 15 minutes LOL. I am exactly like you and say I will try harder but dont succeed. I hate myself, I am so horrible to him.

 

[Chris100]

It took several years but my mum has conditioned/trained me somewhat she feels safe within her established routine although there is a little room for manoeuvre nowadays (albeit almost ten years on)! I'll take it anyways... if it makes mum happy I'm happy too She will occasionally surprise me but I reckon it's her way of just keeping me on my toes!

Are you saying your mum doesn't make you 'lose it'? My wife doesn't but I thought it was just a quiet phase with worse to come. Can it actually continue 'calmly?

 

[Eddcorner]

Are you saying your mum doesn't make you 'lose it'? My wife doesn't but I thought it was just a quiet phase with worse to come. Can it actually continue 'calmly?

The outset of our journey together was frustrating for us both as we attempted to 'find our way' through the brain fog thingy but after those initial years we established an evolving routine which addressed a lot of those upsets. I can honestly say @Chris100 (with hand on heart) that I have never 'lost it' with mum although the beginning was tough as aforementioned. I just put myself in her shoes, if our roles were reversed how would I react? It's different for everybody but we're content and I do hope your period of calm continues my friend

 

[Radam]

I have seen what produces tensions for my wife, even within routine conversations. I try to avoid topics or even words that trigger distress for her. It produces a limited-variety day, but contains problems. I'll take a happy, predictable day for mutual calm.

 

[Radam]

I agree with you Chris. I tell my wife to only focus on working out, eating right, being social, and diving into the Word.

 

[Ali L]

I many times feel like I’m running a race. My husband desperately wants to help but I feel like I’m trying to do 2 things at once. When he helps I end up doing things at super high speed. An example is when cleaning up after dinner my husband will start washing the dishes. I’ll be trying to put away the leftovers but he’s taking the dishes with the food and putting them in thee dishwasher. I have to go as fast as I can to catch him but at the same time I’m trying to put the leftovers away.

I like how you put it canary. I’m doing everything I would normally do but also everything he’s trying to do at the same time. It definitely can be exhausting.

I completely understand what you are saying here - I too feel like I am doing double the work. My husband has Alzheimer's disease, wants to help, but each job gets completely muddled and I'm on high alert to check what he's doing, and then quickly, and hopefully discreetly, re-doing whatever the job is. A simple example is putting the rubbish in the correct bins - even though I have made coloured cards which I give him when he goes out to the bin - 'grey card is grey bin, recycling' - the rubbish nearly always ends up in the wrong bin, and I have to go out, when he's not watching, rout around and fish out the rubbish from one bin and put it in the correct one. It's exhausting, because it's every job that needs doing. He wanted to help, so I said 'would you empty the bins in the bedrooms' and he did - all over the bedroom floors. Another lesson learned - be more specific!

 

[maggie6445]

, so I said 'would you empty the bins in the bedrooms' and he did - all over the bedroom floors. Another lesson learned - be more specific!
Quote
Couldn't help but laugh at that. My OH used to "help" that created work. He's no longer aware of jobs that need doing and I'm actually pleased. Not that he's declined but that I don't have to be so alert and use energy redoing everything he did.
I still feel I'm living two lives but in a different way.
Best wishes to you all trying to deal with this.

 

[tonebear]

Thanks you lot I've just read this thread and am trying to type this with tears running down my face. Because to read that so many others have the same problems is frightening/liberating. It's the small stuff, caching her before she puts something "away", trying to watch something interesting on tele with out her talking ( unrelated rubbish) all the way through the programme, getting her ready for bed when she is adamant that it's morning and time to get up, and on and on. I'm fine physically not tired but mentally I'm rapidly running out of fuel. Time for help, even if I don't want it, I think.

 

[maggie6445]

Thanks you lot I've just read this thread and am trying to type this with tears running down my face. Because to read that so many others have the same problems is frightening/liberating. It's the small stuff, caching her before she puts something "away", trying to watch something interesting on tele with out her talking ( unrelated rubbish) all the way through the programme, getting her ready for bed when she is adamant that it's morning and time to get up, and on and on. I'm fine physically not tired but mentally I'm rapidly running out of fuel. Time for help, even if I don't want it, I think.

I've just arranged one day a week at a day centre. Thinking of two days as he settled well. I'd forgotten the bliss of the weekly shop in 20 minutes without
having to encourage OH to keep walking !🙂 Usually takes an hour.
Just to be able to do something at normal pace ,heaven! To be able to visit the toilet alone , bliss .
Caring is very tiring , especially with broken nights . I am exhausted, but that day centre help is well worth it.
If you have somewhere local then try it. It is keeping me going right now. 😘

 

[leny connery]

I have been advised to take mine to day center, but I know he will hate it. Still, must at least try...soon

 

[Anthoula]

My OH flatly refuses the thought of a day centre or any form of respite, and neither will he accept carers coming in. I`ve tried the "love lies" they didn`t work, and I can not physically man handle a 15 stone 6 foot tall man into a car. So now I simply go out when I wish to, putting as many safeguards in place as I possibly can and keeping my fingers firmly crossed! God forbid something awful will happen while I`m out but if it does perhaps the Social Services will actually wake up and do something rather than waffle a lot and do very little.

 

[maggie6445]

I have been advised to take mine to day center, but I know he will hate it. Still, must at least try...soon

Please give the day centre a try. My oh is compliant and passive but he is very clingy. Seeks reassurance continually and he shadows me. I can't turn without him being behind me
He's been three times and is ok. He's sociable and doesn't always know who I am so he rambles to the carers🤣lucky them!

 

[maggie6445]

My OH flatly refuses the thought of a day centre or any form of respite, and neither will he accept carers coming in. I`ve tried the "love lies" they didn`t work, and I can not physically man handle a 15 stone 6 foot tall man into a car. So now I simply go out when I wish to, putting as many safeguards in place as I possibly can and keeping my fingers firmly crossed! God forbid something awful will happen while I`m out but if it does perhaps the Social Services will actually wake up and do something rather than waffle a lot and do very little.

I didn't tell mine he was going. . just took him as if it was another coffee club I'd found. He did start with another man from our coffees club . I told him I'd pick him up after lunch. I went back a bit early and he was chatting with a carer. . I can't leave mine alone at all. He would be distressed and would go looking for me and get lost.

 

[JudyA]

I just want to say thank you to everyone for your contributions. It's reassuring to know there are so many others coping as well as they (we) are. I share all the frustrations and try to control my own reactions, but it's so hard when your life has shrunk so it revolves around caring and things you used to do are no longer possible. And the 'look after yourself' advice, well meaning as it is, really demonstrates how little others really understand!