Help and Advice

[Bubblyxx]

Hi Everyone
I have been advised to come on here by my local Alzheimer's Rep. Seems that she can't do much to help me.
I have had a glance through various threads and I think I am not in as bad a place as some of you.
My story - Mother (81) has dementia - scored 22 / 23 out of 30 in her 3 monthly tests - has been on Rimadyl for over 12 months - is at the stage where short term memory is a problem - but can have lucid conversations with people that she doesn't see 24/7.
My problem - I don't know how to talk to her when a "situation" arises..
For example - if she has already taken the dog for a walk - and she wants to go again (cos she has forgotten), I tell her as nicely as I can that she has already been. This doesn't go down too well. But I have to stop her as the dog has hip problems and can't walk too much! How can I get my point across without the "tantrums" starting ?
Sometimes she is aware that she has a "problem" and then I get the "I wish I were dead" speech and the threat to take some pills and end it all.
She has become a recluse - not going out - but tells everyone that she "can and does" - but it's not true.
Day Care has been mentioned so she gets some company - but she says she doesn't want to sit amongst "them" even tho we said she could help out by making tea.
I know that I shouldn't ask any questions or contradict - but it is sooooo difficult.
No-one trains you to cope with these situations.
I believe that several people on here have already passed this stage and would really, really appreaciate some advice and guidance.
I just don't know how to handle these situations.
Also, I know that Age Concern / Help the Aged have some volunteers that can "befriend" people and take them out for a couple of hours / lunch etc. Does anyone know if this is available in Rutland ? I know that Leicestershire do it.
Oh dear - so many questions - I think this is a bit of an "outpouring" from me as I don't have anyone else to talk to :-(.
The local Council Carer's Support person doesn't give the support that I think I am looking for - only offers gadgets to switch the cooker off and things like that.

I'm going to stop now - far too much to say and many of you have already been ther, dunnit and got the t-shirt.
Signing off now.
Monika

 

[ChristineR62]

Hi Monika

It's so difficult, isn't it? I was brought up to believe in honesty, and I find it so difficult to agree with statements that my mother makes that are totally incorrect, so I have a very similar problem to you!

My mother isn't interested in day care either, yet she says she's bored at home with only the dogs for company while I'm at work. The dogs, by the way, are small and 13 years old, so can't stand much by way of exercise, which means she doesn't really take them out that often (for which I am grateful!)

I know I'm hopelessly out of my depth here. I don't know if residential care is what she needs right now, or if getting someone to call in is all she needs, but I'm not an elderly mental healthcare professionsl, so how can I be expected to know what's best for her safety and health? And you are in exactly the same position, just like everyone else here.

Monika, this is probably one of the best resources you'll find for this situation - I know that the people here have saved my sanity, this weekend in particular. I hope they have some idea of just how very grateful I am for that, even if I can't express it adequately.

I'm sorry I'm not very much help, but this is a process I'm just embarking on now myself - however, I'm sure you will find the same wonderful support and help here that I have.

 

[Clive]

HI Monika

Your mum sounds so much like mine was. You are so right that there are no classes to teach you what to do, but you seem to be on the right lines.

I used to pretend that I was a “professional someone” who was visiting an important customer… or even my boss… and the target was to keep the conversation flowing without becoming confrontational… mum had to be always right, but I had to make things happen correctly. It helped me focus away from the mum / son relationship which could be so difficult in the circumstances.

When mum wanted to do something she had just done, or was inappropriate, I would always agree that it was a good idea, and that we would do it next BUT we had to do something else first. (In my case it was far too often to ask mum for a cup of tea and a biscuit which later led to unscheduled stops on the way home ).

Mum was a great one for saying “I wish I was dead” but her preferred method was going to be to “put her head in the gas oven”. I would just say that it was not a nice way to go and to remember there was a baby living next door who might be effected by the gas… then I would carry on talking about something else (join her in her world with a lot of little white lies about who I was and what she had done in her life).

Mum would never go to the Day Centre as she thought it was a place for ill old people and not for her as there was nothing wrong with her (with dementia in her late 80s). I was very lucky in that I was introduced to an over 60s club who supplied a volunteer to take mum once a week to the club and stay with her. Other than that I got a local Care Agency to send a person round to talk to mum, paying for it with the Attendance Allowance and Council Tax rebate money.

Beast wishes

Clive

.

 

[Norman]

.
Hi Bubblyxxx

I have been advised to come on here by my local Alzheimer's Rep. Seems that she can't do much to help me.

Is it the local branch of Alzheimer's society that you are refering to?
Norman

 

[Vonny]

Hi Monika and welcome to Talking Point

Tough, isn't it? I used to complain that there was no manual which came with a baby, then I realised it was a walk in the park compared with looking after a parent with dementia.

I don't know if you've seen this, but it mentions befriending in Rutland, the contact name and number is at the bottom of the page.

http://www.ageconcernleics.com/befriending/

May be worth a look.

In the meantime, keep on posting

Von xx

 

[Bubblyxx]

Oh Dear! Having people just listening is sooo amazing that I have some "weepies" - tut @ me at my age (over 50 !).
Thank you sooo much for your time in replying.

Vonny - thanks - will take a look
Clive - sounds like you found a way of coping - I will have to try the "Good idea - can we just ...... first" approach.
Christine - thanks for that. It just shows just how many people are in the same position - or on the same journey. I don't think my situation is as frustrating as yours - and I'm struggling to cope. So I can't imagine what you are going through.
Norman - I'm not sure which branch it is. But the advice was - get on this website and read the information. Quite honestly, I have enough to do with wokring full-time and keeping the house and sorting Mother out without having to dig around for info. Maybe I am expecting too much but I was hoping that a Good Fairy would pop up out of the woodwork and tell me exactly what to do, who to talk to and so on. Maybe I was expecting too much :-/

Oh and Is it normal for me to feel sorry for myself ????
How selfish is that!

 

[ChristineR62]

Monika, my first thread here was "Where's the book of instructions?", so I know exactly where you're coming from.

You want to talk about feeling sorry for yourself? You can't be as bad as I was yesterday afternoon, when I was trying to clean the pile of poo off the living room carpet. I wasn't so much crying as howling and screaming! At the same time, the thought was going through my head that I'm a 47-year-old woman and I should be able to handle this without the sob-fest.

It may or may not be right to feel sorry for yourself, but we all know here what it's like, trying to cope with caring, and it's probably fair to say that a lot of us have times like that, so it's natural.

It may even be a way of trying to recharge our own batteries - spending some time on ourselves for a change?

 

[Bubblyxx]

I may get more time to myself that planned soon as I am changing jobs and - due to the economic climate - I could end up working away from home Monday - Friday.
THEN what do I do!
Social Services say they will do an assessment and maybe do meals on wheels. They don't think she sounds as though she is a risk or dangerous.
I wonder when they will think that ... when she has walked off with the dog and crossed the road without looking ?!?!?!?!?

 

[ChristineR62]

I may get more time to myself that planned soon as I am changing jobs and - due to the economic climate - I could end up working away from home Monday - Friday.
THEN what do I do!
Social Services say they will do an assessment and maybe do meals on wheels. They don't think she sounds as though she is a risk or dangerous.
I wonder when they will think that ... when she has walked off with the dog and crossed the road without looking ?!?!?!?!?

Oh good lord, I have absolutely no good suggestions to make here! I worked away during the week, but that was more than 10 years ago, before the remotest hint of AD came into our lives - I'd have gone into a flat spin if I found myself in that situation.

And I understand the point about crossing the road without looking - my neighbour put the fear of God into me, when she said that if my mother did that and caused an accident, they could come after me as her carer and make me liable for the accident! I have no idea how true this may or may not be.

 

[jenniferpa]

Christine - not true at all about what the neighbour said (and what a charmer to be sure -like you need more to worry about). Perhaps she meant well but still...

In the same way no one (spouse/child/ no one) can be forced to be a carer of an adult, you cannot be forced to take legal responsibility for an adult. Now the case could be made that social services have a duty of care for a vulnerable adult, but you don't often (i.e. ever) hear about them being sued for "causing an accident" in this way. The only thing that might come into play - does household insurance have a personal liability element in the UK (I've been away too long)? Because if so, and if your mother was be sued that would cover it but that's nothing to do with you.

 

[Helen33]

Hello Monika

I'm catching up on your posts and I noticed this

I was hoping that a Good Fairy would pop up out of the woodwork and tell me exactly what to do

I thought you might like to borrow this

Sending love and best wishes

 

[madala]

Hi Monika ,Have yougot Crossroads or Admiral nurses in your area Crossroads have been a life saver for me over the last 4 years looking after my wife several times a week giving me some (ME) time . take care Madala

 

[Bubblyxx]

Good Morning

Helen33 - thank you very much - I hope it will help me moving forwward
Madala - I have checked - they don't cover our area.

Well I have heard this morning that my new job has moved a step closer to mean me working away during the week.
I am still not guaranteed to get the job so I don't want to get panicky JUST yet! But IF I get the job, then the chances are that I would need to start next Monday.
that doesn't leave me much time to get organised.
I suppose if I get the job, then it's a call to the counil straight away for the assessment.

That in itself is going to be a problem as I will have to tell them what support I need - all infront of Mum - which I haven't had to do up til now. She will NOT like it one bit. There is "nothing wrong with me other than old age".

Oh joy - something to look forward to and work out how to cope with ......... again :-/

 

[Helen33]

Hello Monika

If it was me, I wouldn't wait until I knew whether I was going to be appointed because it will leave too little time to get arrangements in place.

I think it might be a good idea to be making arrangements today to see a Social Worker sometime at the early part of this week in order to get the ball rolling as to how mum's needs are going to be met. I appreciate that your mum doesn't recognise that she has needs but that can be the nature of dementia and someone needs to be making responsible decisions and working together with your mum.

I can't imagine how you would be able to suddenly be away all week and have provision in place so quickly but I really do hope that this can be achieved. It might be a good idea to be thinking of giving potential new employers a reasonably possible start date Once you've spoken to a Social Worker and worked out what it is that is required and what it is that can be provided, then you might have some idea of the time element needed for these changes to take place.

Love and best wishes.

 

[gigi]

Bubbly..I'm sorry to hear you're having so many problems with your mum.

Also, I know that Age Concern / Help the Aged have some volunteers that can "befriend" people and take them out for a couple of hours / lunch etc. Does anyone know if this is available in Rutland ? I know that Leicestershire do it.

The sitting service run by Age Concern also covers Rutland...and they have specially trained Dementia Sitters.
We live in NW Leics and are allowed 8 hours a week free of charge.
Your mum should be eligible for a Day Centre placement one or 2 days a week...if she'll be willing to go.

Like Helen says..it's a good idea to start the ball rolling now if your job is about to change. These things can take time to organise.

love xx

 

[Clive]

I agree with Helen. My little experience with SS is that they are very slow to respond. Maybe a little research into a private Care Agency, as a back up if required, would be worthwhile.

Best of luck

Clive

 

[dood]

Hi Everyone
I have been advised to come on here by my local Alzheimer's Rep. Seems that she can't do much to help me.
I have had a glance through various threads and I think I am not in as bad a place as some of you.
My story - Mother (81) has dementia - scored 22 / 23 out of 30 in her 3 monthly tests - has been on Rimadyl for over 12 months - is at the stage where short term memory is a problem - but can have lucid conversations with people that she doesn't see 24/7.
My problem - I don't know how to talk to her when a "situation" arises..
For example - if she has already taken the dog for a walk - and she wants to go again (cos she has forgotten), I tell her as nicely as I can that she has already been. This doesn't go down too well. But I have to stop her as the dog has hip problems and can't walk too much! How can I get my point across without the "tantrums" starting ?
Sometimes she is aware that she has a "problem" and then I get the "I wish I were dead" speech and the threat to take some pills and end it all.
She has become a recluse - not going out - but tells everyone that she "can and does" - but it's not true.
Day Care has been mentioned so she gets some company - but she says she doesn't want to sit amongst "them" even tho we said she could help out by making tea.
I know that I shouldn't ask any questions or contradict - but it is sooooo difficult.
No-one trains you to cope with these situations.
I believe that several people on here have already passed this stage and would really, really appreaciate some advice and guidance.
I just don't know how to handle these situations.
Also, I know that Age Concern / Help the Aged have some volunteers that can "befriend" people and take them out for a couple of hours / lunch etc. Does anyone know if this is available in Rutland ? I know that Leicestershire do it.
Oh dear - so many questions - I think this is a bit of an "outpouring" from me as I don't have anyone else to talk to :-(.
The local Council Carer's Support person doesn't give the support that I think I am looking for - only offers gadgets to switch the cooker off and things like that.

I'm going to stop now - far too much to say and many of you have already been ther, dunnit and got the t-shirt.

Well ... I'll have a go at describing things I found to be useful fully accepting that these may or may not be suitable in different circumstances.

1 - never say the 'N' word

2 - never try to control. If person wants to go out a few minutes after arriving home well it seems reasonable to me ...

3 - be aware that anything that energises aspects of dementia can make for hours of hard work. Taking the dog out for 20 minutes or so is nothing in comparison. Conclude: take the dog out.

4 - as physical strength diminishes it seems easier to care for the person as the disruption caused by physical activity is lessened or reduced

5 - wait till the overnight things start and try to conserve energy whenever you can because it can be demanding when stuff happens unexpectedly

6 - avoid plopping person in front of tv hoping that something miraculous might occur. Try watching tv with person and observe body language indicators rather than spoken indicators.

7 - try to interpret body language indicators

 

[julieann15]

Hi
We paid a lady from Age Concern via Direct Payments for 3 hours Social Activties- this included taking mum to garden centres,shopping for clothes/shoes and a meal out too. This was in Hinckley and Bosworth.J has also become a good friend of mine over the last 18 months or so

Love Julie xx