Hi, I'm new - and dont know where to start.

[Gabriella]

Hi, I'm new - and dont know where to start.- learning to cope

Hi, I have been reading the board for a few days and just felt I didnt know where to start - so much has happened over the last few months.
My mum was diagnosed last week with Alz/Vascular dementia, after months of tests, scans etc.
We knew this may have been what was causing her bizarre and distressing behaviour - now its confirmed.
One of the things that we are finding it so hard to cope with is continuous repetitive questions. Mum is a smoker and is asking for a cigarette every 2 minutes. Sometimes she has one in her hand when she asks. She also wants a cup of tea one after the other. Mum gets frustrated and angry, shouting when we try to explain that her cigarettes need to be spaced out. She keeps saying "I want my life back".
Having somewhere to come for support and guidance is so helpful.
So much more, but maybe that's enough for now,
Thank you,
Kay.
(Gabriella is my user name, I chose it because I have given my mum an angel that we have called Gabriella - she sleeps with it under her pillow )

 

[rhallacroz]

Hi Kay
Oh this is all such a shock for you all. Even though you probably knew in your heart what the condition was you always hope that there is some explanation for this behaviour. And when your diagnosis arrives it all to real. But look don;t despair as you have probably read on here we are all at different stages of the journey and you will get through it. My advice is to get help early.. Introduce professionals that can help get respite. Get your mum used to meeting new people in the form of Carers or sitters. We all struggle on until something snaps then it seems to take ages to get emergency help . Dont let it get that bad. At least you now can plan. With the help of TP you will realize that we all have decisions to face in one way or another or battles to win.
I hope you have a good social worker who supports you.
We are always here for you.
Angela x

 

[TinaT]

Angela has said some very wise words especially about trying to get help from your LA put into place before things get to crisis point. Such things can be very difficult to get (See Grommit's post) and can take a long time to get sorted out. So the sooner you try to do this, the better for all of you who have to deal with the situation.

When my husband was diagnosed, it was a relief for me. In my ignorance I believed that the 'new wonder drug' would give us many more years together. It didn't.

The repetative behaviour,eg: cigarettes, cups of tea is perhaps your mum's way of holding on to what she sees as 'normal' as so much must seem strange, frightening and abnormal to her. It is very waring on carers and I'm sorry to say, a very common thing to be asked the same repetative questions, or to see the same repetative behaviour.

I'm glad that you have posted on the site. Over the last few years the posters on this site have given me support and advice which has greatly helped.

xxTinaT

 

[roundy]

hi.
Get everyone in place to help.

My mum is a smoker, its the worst thing and the most urgent things ss jump on when they want someone in a home!Just try and be careful.

Thinking of you.

Love Lisa.xx

 

[mum of two]

Hi Kay,
my Mum was diagnosed with vascular dementia last June. I had my surspitions but when it is confirmed then that's when it becomes real. I agree with Angela that you must get as much help as possible as soon as possilbe. My Dad was offered respite but he said no . May be he should have done. I know that we tend to think that we can manage but dementia is a very complecated condition. Which needs as much help as possible.
It's easy to do the simple things like washing up , preparing veg for them , but we must let them do ads much as possible for as long as possible. It does seem to help them.
I hope that you both have lots of good days.
Mum of Two

 

[Gabriella]

Thank you all

Hi, thanks so much for your replies and support.
Had a realy difficult few day's and mum is getting frustrated, angry and a bit hostile too.
I have read a few more posts and realise that my family is lucky in many ways. Mum lives with dad (he is 78), myself and 2 sisters are going round every day to support dad as his stress levels have gone throught he roof! He really feels he cant cope.
We have got attendance allowance sorted, and mum is seeing her consultant every month.
We have been allocated 10 hours a week for carer to come 3 times a week. Only problem so far is mum HATED the first one, really got stressed and agitated - shouting she would not have that woman in the house! A new one started today, she smokes the sam as mum - and mum seemed to really like her. Holding on to hope that they will get on and get to know each other.
Thanks for listening again, love and warm wishes to you all.
Kay

 

[TinaT]

Fingers, toes and any other bits and pieces crossed for you. Seems like a good start for mum and the carer! Thank goodness your dad gets a little bit of relief from the caring. When he feels up to it, perhaps you could treat him to a few hours 'round at your place' or suchlike, whilst the carer stays with mum.

Hope everything goes in the right direction for your family and thanks for the update.

xxTinaT

 

[millypee]

Hi Gabriella, I'm glad you've found TP, they're a fantastic, supportive bunch. You can get the answer to most things here, and if they don't know it, they'll find out!!
Yes, when the words are actually said by the consultant, they are a real shock, but,as you say, you probably knew what it was before diagnosis. At least now you can get help with things.
The repetitive questions are the worst for me, personally, I used to be able to have a lovely, intelligent conversation with my mum, but that's no longer possible.
You've done really well getting carers in so quickly, 6 months on and my mum's only just been assessed!

Best wishes to you and your family, we're here for you.

 

[vivienz]

Hi Kay,

May I ask how you acquired the carers for your mum? Although it's early days, I don't seem to be having much success and as my mum is diabetic & living alone, the sooner I can get things organised for her, the better. Unfortunately, I work full time and so can only regularly get to her at evenings.
Thanks,
Vivien

 

[johne]

carers

May I ask how you acquired the carers for your mum?

Vivien, I see that your located in Bournemouth; I don't think I'm allowed by forum rules to mention the name of the care organisation that helped my Dad (he lived in E.Dorset), but the local social services provided a list of care providers. The one we chose is a local Poole based charity, Dad was able to afford the regular price for the care but I think there were discounts or a maximum weekly charge for those unable to pay the full rate.
John.

 

[Gabriella]

Hello again -

Hi, thanks for your replies again
Viviene, Johne may have answered best for your area - I live in Hampshire and we arranged the carers through Social service assessment.
I had a good day with mum today, I think I read someone else say we must treasure the better times. I took her to Portsmouth as she keeps reminiscing about where she worked 50 years ago, she so desperately wanted to see the place again. We went, but of course its not there, just a huge industrial site where it had once been. I hated seeing her disappointment, she really thought it may have been there, even though we explained before we went it prob wouldnt be. It is clinging on to good memories of the past - she has been thinking about this for many months, and dreaming about it. Still glad I took her though.
She only swore at me once today - I thank god for a good day.
Warm wishes to you all
Kay.