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Coping with difficult moments - Carers UK Forum

Coping with difficult moments

Share information, support and advice on all aspects of caring.
Hello everyone. I look after my 76 year-old mum who has vascular dementia, diabetes and a host of other less serious ailments. The last year and a half have been a very steep learning curve for me, as I mourned the loss of the mother I have always adored and tried to come to terms with the nervous uncertain person she has become.

I've learned to cope with most of the practical problems and have managed (just) to keep hold of my job, but I'd like any advice or insight you have gained as a carer in relation to something which is becoming a problem which i am finding it harder and harder to deal with.

My mum keeps asking me questions over and over again. Constantly. She wants to know what I am doing every minute of the day. If I go out for coffee with friends she wants to know who I go with, what I eat, where we go. She bombards me with questions: "is it alright if I go for a sleep?" "will you wash this cup for me?" "what time will you get up tomorrow/go to bed tonight?" "will you make the dinner/do the dishes/take out the rubbish?".

I know this sounds like a trivial problem, but it's driving me absolutely crazy. I feel like I have no private life. I'm constantly under surveillance. I can't go into another room of the house without her wanting to know what I am doing.

I keep losing my temper and I can hear a harsh tone in my voice when I speak to her. Over the course of hours, I feel my stress levels rising until I can't bear it any longer. At that point I try to get a break by leaving the room. I've tried to pretend I am sleeping, but she physically shakes me until I react. She has dragged the bedcovers off my bed to get me to react. I've tried to pretend that everything is fine and that I am just reading in another room, but she comes in and watches me. I've locked myself in the bathroom, just to try to get 5 minutes of peace, but she hammers on the door until I come out.

I know that she can't help her behaviour any more, and that I need to try to better control my reaction to it but I really don't know how to. I don't have any family nearby who can help.

Has anyone faced this type of problem? Can you suggest ways i can cope better?
Jim, I don't have any experience of this personally although I've worked with a few carers in my area who get this sort of behaviour. There are several members of this forum who'll probably be able to help better, but one of the hardest things for both you and your mum to cope with is the effects of the dementia.

Your mum may well not be aware of what her problem is but she certainly knows something isn't right - so she's looking for answers from the one person she can trust to know and to tell her: you.

You might find this link useful: Alzheimers Society
Hi Jim

Ditto Image so, yep, I understand Image
How to solve the problem ? - nope, don't have the answer Image

I try to 'switch off' mentally and go into automatic pilot when mine starts all the questions but it's not easy to keep the frustration out of my voice especially when I can see that she's not believing my answers. I have to keep reminding myself that she's frightened and can't understand what's happening to her - she needs continual re-assurance.

Our local branch of the Alzheimer's Society has recently held a series of short courses for Carers using CBT (Cognitive Behaviour Therapy) to teach Carers how to relax - personally I didn't find them much help, but I know that a lot of others did find them useful.

At the end of the day I think I have now reached my limit and, as much as I hate the idea, we're now looking for a residential care home for Mum. A place where the staff are well trained and caring and can cope with her questions - perhaps you should be thinking along these lines too ? It doesn't mean that you stop caring, just that your caring takes on a different perspective.
Can't offer any advice, sorry, but it most definately is not a trivial problem.
(((((((((((((((((hug))))))))))))))))))
Hi Jim
I can understand your stress as my father in law has vascular dementia. The endless repeated questions and repitition is exhausting. My FIl is now in a care home and is a lot calmer and happier, I think having structured days help eg meals at set times etc. Also he has no decisions to make now which has made him better as the confusion and frustration of not handling his life was making him angry and depressed. Is this a route you could go down?
I hope things will improve for you.
My dad STAN had alzheimers and he also constantly asked questions , it can get you down but i just answered him as best i could , one BIG BIG problem i / we did have ,,, and this is one of the resasons why we dont like care / rest homes ... i had an accident lifting STAN no damage to STAN, just me- ouch , social services said that i could no longer care for him at home till we had a hoist and a tilting hospital bed ... they then placed him in respite care for what should have been 1 week, after the second week we were told the bed and hoist may not be available for upto 6 months ,
the great escape was then planned ,, i took him home against the wish`s of social services on the monday morning ... bed and hoist arrived on the tuesday morning ,,, but the BIG BIG porblem the care / rest home left us with was 1. the placed him in incontinence pads , yet he was not incontinent .he did ask for the toilet sometimes when he had just been...
2.. HE CONSTANTLY ASKED FOR A NURSE ,,,,, DAY AND NIGHT FOR THE NEXT 8 MONTHS BEFORE HE PASSED AWAY ... HE WOULD SHOUt OUT MORNING NOON AND NIGHT = NURSE, NURSE, NURSE , NURSE , NURSE , NURSE, NURSE , NURSE , NURSE , NURSE , NURSE , NURSE , NURSE , NURSE , NURSE , NURSE , NURSE BORED YET ? NURSE , NURSE , NURSE ... i came to the conclusion that he was neglected within the care home ,,,,
for the last few months of his life i would get some sleep/ rest when the old doll could sit with him , as he just needed some reassurance....on my own i would have snapped ,,,,,,,,,,,
Ultimately no human being can stand this endless repetition and stalking behaviour and stay sane, and its a good idea to plan for the day when a nursing home takes on the responsibility of day to day care. That isnt an end to caring, some carers continue to visit every day; but it is an end to the stress and murderous feelings that arise in just about all carers in this situation. Start to research very carefully, some homes are good, some bad, some indifferent. Look behind the posh facades and the pleasant receptionists: ideally try them for some respite first for a few periods of a week or so before deciding what works and what doesnt. Never let the thing drag on until a crsis looms, always plan well ahead.
Hi Jim t,
mother who is 86 and finally got her tested to find she does infact have dementia after my mother passed away i wanted to make shure that she was getting the right care.
One of my main issues is the same as yourself as i constantly need to repeat myself,shout so she can hear me and tell hr my every move! it is very draining and tyring aand does play a big facter with your own health.
i havnt found anything to hel this unfortunatly apart from reading and understanding her condition and trying to accept what is happening can ease the sittuation.
Dear all

Thank you for all for your responses to my original posting. I'm sorry it has taken me so long to respond but I've not had much time to get online recently.

As is usual with these things, I feel as if I am on a rollercoaster! When I posted my original message, mum was driving me mad and I wasn't coping well. Things are now a lot better, but inbetween mum was ill with flu for a couple of weeks.

I've been thinking a lot about the difficulties I've been having and I've decided to take path of least resistance and try to go on autopilot when she asks me a string of questions (as suggested by susieq). The post by Charles was 100% correct, and really touched me in its truthfulness: ultimately mum needs reassurance and I need to give it to her. I've come to the conclusion that it's easier to deal with the questions than to let it get out of hand by losing my temper. I just try to distract both myself and her when she asks me lots of questions.

This is working well at the moment, but the reality is that my situation is changing almost daily. I think in some way that is the reality for most carers!

I can understand those people who have suggested that maybe it's time for me to look into residential care for mum, but I don't think I've reached that point yet. I would never judge anyone who has to do this, and I'm sure I will have to consider it in the future, but at the moment I can just about cope (albeit with a lot of difficulty!), and mum gets a lot of comfort from being in familiar surroundings, still able to do small tasks for herself, with her own things around her and with contact with the friends and neighbours she has known for years. I would find it really hard to let that comfort be taken away.

As a carer, I feel frustrated and useless most of the time. I certainly never ever feel that I am looking after mum as well as she deserves. I find it hard to have the patience required to be a carer, and I always feel that the pressures of working and caring mean that I do neither as well as I would like.

Ultimately, I don't think I will ever have a more rewarding job than the one I have as a carer. However, it is also the most difficult, frustrating and draining job. Unfortunately carers are almost invisible to those who aren't doing it. That's what I find most valuable about this forum. Although I don't post as often as I would like, I get a lot of consolation by coming on here, reading and identifying with the situations of other carers, and knowing that I'm not alone, and that there are people who understand.

Jim
I just try to distract both myself and her when she asks me lots of questions.
That's a tried and tested way, Jim, although it doesn't always work from what I hear. Certainly doesn't work with my autistic son! Image

As you say, life is quite a rollercoaster when you're caring for someone, and probably most so when it involves caring for someone in some form of mental distress (whatever the cause). Part of that is probably the fact that the person looks ok (if not quite), but is behaving like someone you don't really know. It can be really unnerving.