Late Moderate Early Severe

[totallyconfused]

this is what the consultant said yesterday. He said to give family that aren't visiting an update and ask them to visit if they can. He said remember-shes better today than she will be tomorrow

He said shes doing better than she should be at her stage and if my sister and I weren't at home that she would be in a nursing home or possibly dead by now.

It was a real confidence booster as he said we were doing a great job and doing what he called "Validation therapy" whereby we have entered her world by turning off tv, closing blinds, getting rid of mirrors and playing along with what she says.

I called some extended family members today-some were surprised and others were like shes not going anywhere anytime soon and didn't seem to worry.

I told them about her hallucinations, delusions, and the fact that the consultant confirmed she has agnosia and explained what that was.

I called them to explain the situation and said it would be good time to visit before Christmas but also called them so they cant turn around and say they weren't told

Would you worry about entering severe stage or do you think we have years left no panic she might no go through all of those signs etc

 

[love.dad.but..]

It is very difficult to say as one person with severe stage may further decline more quickly or slowly than another even at what is deemed end of life. My dad had an emergency operation at late moderate/early severe stage and the surgeon thought from his experience in seeing different dementia patients that Dad had probably 2.5/3 years. He was spot on time wise but only because sepsis and a stroke brought about end of life and that was mainly due to the sepsis impact because mentally Dad's brain couldn't understand that he needed to take fluids independently to help flush the toxins otherwise I think he would have stayed in advanced stage for some time and wasn't yet bedridden although was doubly incontinent, having regular falls and not eating well. Others will tell you that the advanced stage can go on for years and I had seen this in dads nursing home, they outlived dad and that surprised us all.

 

[Kevinl]

I just tested the water temperature, it was "hot tepid, cool warm" so a bit too hot to be called tepid but then again a bit cool to be called warm.
My wife's in care, can't speak, doubly incontinent, can't eat unaided and can hardly walk but I'm not phoning the kids yet.
One thing I have found in the past 18 months visiting a care home is that the ones still there and the ones that aren't is the single most unpredictable set of results I've ever seen.
K

 

[AlsoConfused]

Agree. Everything's so unpredictable. My Mum can still read text (if given an incentive to, like attention and the right kind of women's magazine!). She's at stage 6B as far as we can tell.

 

[totallyconfused]

I just tested the water temperature, it was "hot tepid, cool warm" so a bit too hot to be called tepid but then again a bit cool to be called warm.
My wife's in care, can't speak, doubly incontinent, can't eat unaided and can hardly walk but I'm not phoning the kids yet.
One thing I have found in the past 18 months visiting a care home is that the ones still there and the ones that aren't is the single most unpredictable set of results I've ever seen.
K

Maybe Im just tired but I don't get what you mean by Im not phoning the kids yet?

I don't want to panic anyone at all. I just want people to see her while shes good and can chat, Why disappear for ages and then turn up and be surprised at how bad shes gotten? They know the situation-if they wish to visit they can and if not fine. They cant say they weren't warned.

 

[canary]

Maybe Im just tired but I don't get what you mean by Im not phoning the kids yet?

Usually, when doctors say "to give family that aren't visiting an update and ask them to visit if they can" they mean that they think that person is at end of life. Im guessing that this is what kevinl is referring to and thought maybe you would be concerned that she had reached that stage.

My brother never did visit Mum, apart from when she first went into her care home - even when she was most definitely at end of life. You can never tell with families.

 

[lemonjuice]

Maybe Im just tired but I don't get what you mean by Im not phoning the kids yet?

I think what kevin was referring to was that, although his wife could be considered at 'end of life' he knew that didn't mean immediate, so no need to rush to ask anyone to 'visit before it was too late'.

As it happens my mother has been considered 'end of life' for over 2 years now, when all medication except regular paracetamol every day in case she is in pain. I've now had 2 phone calls- one last week and one yesterday to say 'Mum was comfortable!' She's had nearly 20 emergencies over the past 2 years and the NH generally only phone if she has an emergency, so no idea why they're now telling me what is for my mother 'normal' in between those emergencies.

 

[totallyconfused]

Im aware that there isn't a rush but some of these family members will be the ones giving out if we didn't tell them and she did decline quickly. They have the information now so they can do with it what they like. I wont be running after them or ringing with another update for a long while. They might ask if they visit or call for an update now but if not I wont feel guilty about it anymore. Obviously if major decline/is in hospital I would let them know.

I appreciate the consultant confirming the stage and saying to let family know as no one knows how this will play out and I would prefer to know where shes at and be prepared/educated on this stage etc.

thanks for replies

 

[lemonjuice]

Im aware that there isn't a rush but some of these family members will be the ones giving out if we didn't tell them and she did decline quickly.

You see one never knows how quickly that 'eventual decline' may take.

Personally I would put the spin on it of ' If you would like to visit now whilst mother is still relatively well and have some good memories of her, now might be the time because as time goes on she will deteriorate and you might not want to visit then and have more negative memories'.

 

[Grannie G]

I asked my sister twice if she wanted to make her peace with our mother, after being told end of life was unpredictable but could be any time. She refused both times.

These people know where their parents, family members are. They know how to make contact, they just choose not to.

Those of us who are/were primary carers are hurt by the lack of interest far more than the person with dementia is. We hurt for them. The disinterested are conscience free.

When the worst happens and we are asked why we didn't inform them, they wouldn't have needed to be informed if they cared enough.

 

[Moggymad]

I asked my sister twice if she wanted to make her peace with our mother, after being told end of life was unpredictable but could be any time. She refused both times.

These people know where their parents, family members are. They know how to make contact, they just choose not to.

Those of us who are/were primary carers are hurt by the lack of interest far more than the person with dementia is. We hurt for them. The disinterested are conscience free.

When the worst happens and we are asked why we didn't inform them, they wouldn't have needed to be informed if they cared enough.

Totally agree with Granny G particularily about the primary carer being more hurt by the lack of interest than the PWD. It's very hard to accept the apparent lack of concern & you perhaps feel you are taking issue with them on behalf of your mum's hurt feelings if she was aware of the situation. I think it is up to them to contact you for updates now you have put them in the picture. Be it on their conscience if anything happens in the meantime. If you were ill you wouldn't expect to ring family to let them know how you were doing. That's their responsibility. As you say it's down to them now. Hope you can go forward with a clear conscience & strength for the future.

 

[malengwa]

I was pretty blunt with my estranged brother when mum was early in diagnosis basically saying 'if you want to see her whilst she still knows who you are you better visit' he comes about every 6 weeks now. I do all the running round which at times I resent, but I don't want anyone saying to me later 'well if only you'd told me'. I've told the people that matter, it's up to them if they want to see her whilst she can at times hold a simple conversation and even have a laugh.

 

[love.dad.but..]

Grannie g has hit the nail on the head for a lot of primary carers. In the nearly 3 years of dad being in his nursing home, my sisters albeit who live a fair distance visited probably 3 times a year. I kept them up-to-date initially but gradually realised although thoroughly disappointed by their disinterest that they were very different to me so just plodded on with dad and his affairs on my own letting them know only if something serious occured such as A and E . This was reinforced to me when he came to very clearly sudden end of life when over a couple of weeks he was deteriorating daily with the inevitable not far away, I spoke to them both with a clear description of how he was and that he may not have long....and they still asked me 'do you think I should visit now'...Um...wouldn't you just want to visit him anyway were my thoughts! Anyway both came the next day which as it turned out was the last day before he slipped into a coma.....as with arranging last rites for dad which would have been very important for him,..I felt I had ticked all family boxes and had peace of mind.

 

[Duggies-girl]

When the worst happens and we are asked why we didn't inform them, they wouldn't have needed to be informed if they cared enough.

Very true Grannie G

I no longer expect my brother to play any part in dads well being. He lives a five minute walk from dad and manages ten minutes once a week. I have to drive to dads every day and do everything that he cannot do. Dad is lovely and can still do most things but cannot go out on his own as very vulnerable. He does love a cup of tea and a chat.

Brother has at least three holidays planned in the next six months and even asked me if I would look after his dog while away for a weekend as they don't believe in kennels. He is at the seaside today with the Sil and the dog and having a lovely time. (They post on face book all the time)

I no longer update him on dads appointments as I felt I was boring him last time and he can always ask if he wants to know.

 

[Bunpoots]

My dad's a sweetheart, hasn't always been!! I don't think my brother or sister have any idea just how confused and vulnerable he is.
I agree with Grannie G. I don't bother telling them - except if something dramatic happens, cos if they cared about dad they'd ask.

They were both the same with mum when she was ill. And our aunt who, being mums identical twin was always very much part of our immediate family. Bro and sis are always on holiday or pursuing some leisure activity.

I know I'll be blamed for not telling them how ill he was. As if they don't know...