How to cope with end stage

[barbara h]

Hi everyone

A couple of weeks ago i posted saying that the doctor had been to see my mam as she had stopped eating, drinking, talking and responding to anyone. He said she was at the end stage of her vascular dementia and we feared the worst. Well since then she has eaten some days then refused everything the next still sitting or lying in bed with her eyes closed most of the time and hardly talking at all. But this week she has been eating and drinking well even feeding herself sometimes and opening her eyes a little, she is even walking a little with the help of two people. When we visited yesterday she didn't recognise us but she did respond to our questions better.

My sister has gone on holiday today for a week - something she didn't expect to be doing two weeks ago. I go on holiday in three weeks time and although i feel a bit better about going away i am still anxious about something happening before then.

My mam's CPN has said mam could be like this for weeks or months or longer and we have to get on with our lives the best we can and to try not to put our lives on hold. Her condition has deteriorated very quickly so it is so unpreditable anything could happen.

Any advice how to cope?

love
barbara h

 

[christine_batch]

Dear Barbara,
My husband is in the end stage and has been in E.M.I. Unit for 13 months now. A couple of months ago I was told to expect a telephone call at any time.

The Doctors' cannot really say how long, because the patient can be down one minute and up the next.

As for your heading how to cope with the end of stage, well I take each day as it comes.

Take care of yourself
Christine

 

[connie]

Dear Barbara, no easy answers, as 'end stage dementia' has no definite time span.

As Christine has said, those of us in that situation simply cope day to day. Then again that's probably the only way to deal with this illness from start to finish.

Thinking of you, take care now.

 

[andrear]

Hi Barbara

Have you got your plans sorted out for the inevitable. I know that sounds rather brutal, but for me, it needed to be done, and I've actually got a list with everything put down just as mum and dad wanted. If not, then I really would start to put something together now rather than leaving everything until the last moment.

It really amazed me that mum really wanted to use a particular funeral director, one I hadn't heard of before, but one who has been used many times throughout the family.

There were many things which came up which I certainly would never have thought about but at least now I do feel that when the inevitable happens I will be prepared.

Just take one day at a time and I hope that your sister is able to enjoy her holiday and indeed that you will also be able to relax somewhat on your holiday.

Jon and I went away for a fair few weeks last December and I was dreading the phone call from home but it never came, and although mum has only a short time left with us, I am still making plans for my next holiday because I really do need the break.

Love to you all
Andrea

 

[Mameeskye]

Hi Barbara

MY heart goes out to you. I lived with this stage for over 18 months before Mum finally passed away, with the last 8 months being particularly bad due to frequent TIAs.

You cannot live normally, although you have to try. Even a week before Mum died the home staff told me to make the plans to go away. Chat with them, although they can give you no assurances you can always come up with a plan of action, even if it is phoning from the airport just before you get on a plane.

Heading on the 10hour road journey to Cornwall was hard last year, but Mum was in quite good health (relatively speaking!) before I left which made it easier.

I think, to keep me sane, I also thought of the contingency plans so I knew what they were if I ahd to use them, and then tried to get on with living. It's what my Mum would have wanted me to do.

But it isn't easy

((((((((((((hugs)))))))))))

Mameeskye