How Long?

[sue38]

Hi Hazel,

Personally if I were John's son I would like to know. As Cate says he is a big boy now and doesn't need protecting. I suspect that my Dad may have PPA, although we have not discussed this with the Consultant, but the symptoms and progression sound very similar to my Dad.

When I read your post last night I was quite shocked but would rather know than not know. Will I tell my Mum? Probably not, but that's partly because she's still not totally accepted my Dad's illness and mainly because we have not had a confirmation of PPA from the medics - it is just my view.

More importantly you should not have to bear the burden of this 'knowledge' (if you can call it that, Sandy's comments make interesting reading) on your own. John is his father and he should bear some of the burden.

As for telling him first rather than sons who are closer to John, I don't think you need to worry. You've got enough to worry about. Could this son tell his brothers rather than it always falling on you? Is it time he got more involved and took some responsibility? I appreciate that he has a young baby, but there are people on here who have young families AND assume full care and responsibility for their parents.

I apologise if I have spoken out of turn. I don't know John's son. It is just my opinion.

Personally I would tell him sooner rather than later and then try and enjoy your time away. Hope you get some decent weather.

 

[Taffy]

I have a question which has been bothering me all night. Tomorrow we're going away for a few days with one of John's sons, DIL and baby.

Do I tell them?

On the one hand, it would be 'good to talk', and I guess I'll find it difficult not to, given that we'll be living at close quarters.

Dear Hazel
Sorry that your situation saddens you so,maybe it would be good for you, just to enjoy the company and time away. I know your burden is great,but maybe, by discussing this while away it might put a damper on things, then in turn you'll feel bad about that.I can understand how it would be good for you to talk this over with family and seen you have doubts about telling who first, maybe, it would be best to just mull things over abit more,better than having regrets. I do hope that you all enjoy your time together. Keep Safe. Taffy.

 

[BeckyJan]

Skye I do hope you are feeling less panick striken today. All the right words have already been said but I do so much 'feel' for you. But Norman has taken those familiar words again 'day by day'. We know how cruel and unpredictable this wretched disease is and that is all we can do - make the most of today. I guess when it gets to that very final stage we may be glad that our loved one can move on to 'peace' and no suffering.

I personally just do not want that very final bit to last long - I just want things to stay at least as they are now but I know that is just wishful thinking. Also if I put myself in David's situation for myself I would want the very end stage to be over quickly - in fact he has already brought this subject up himself.

Not sure whether this rambling helps, but you do know that I am thinking about you.
Take care Beckyjan

 

[Kathleen]

Hazel

How long's a piece of string is a question that is probably easier to answer than this one.

With Mum I take each day as it comes, I try not to look too far forward or back as that makes me so sad.

As far as telling your son, yes I think you should, Dad isn't with us any more, but he told us everything.........the truth wasn't half as scary as quessing what was going on.

Thinking of you.

Kathleen
x

 

[Amy]

Hiya Skye,
Tell John's son or not?- My answer, is do what feels right for you. If it will help you to talk then tell them. Dont worry about the other two - is it fair on them?- they are all grown ups and have to understand your needs.
Much love,
Helen

 

[Margarita]

Tomorrow we're going away for a few days with one of John's sons, DIL and baby.

Do I tell them?

I would , but that's just me , better then just letting it bottle up inside of you .

I hope you have a lovely time with them , ((hugs))) also hope your feeling better tonight xx

 

[Skye]

Thank you everyone for all the support and advice. What a great bunch you are! I was feeling so low last night, I almost rang to say we couldn't go.

Much better now, thanks to you all.

Still don't know what I'll do about telling son, play it by ear, but I think I'll probably tell him. I just wish I'd had chance to tell eldest son first, but they've got family over from Australia just now, so no chance.

I'll let you know when I get back -- if I haven't turned into a prune -- thanks Fifi!

Love to all,

 

[Margaret W]

PPA and Skye

Sorry Skye, new to all this, but I don't know what PPA is, never heard of it.

Mum just diagnosed with AZ and that is new to me too.

So difficult to advise someone on an illness that I know nothing about.

Seems to me that all forms of dementia (i.e. brain deterioration) have such overlap in terms of symptoms, speed of development and outcome, that we just have to wait and see.

But turning to telling relatives, gee, my two daughters, aged 27 and 23 have been just fantastic to me. I don't think either of them have a clue what AZ means (like me!), they haven't been involved with the practical problems or the diagnosis, but I've told them all I can all along the way, without wanting to scare them, and bless them they have been so supportive. If only just a phone call to me to ask how grandma is it is great. Youngest daughter was prepared to set off from Bristol to North Derbyshire tonight at 5 p.m., just to see grandma, and travel back tomorrow. I had difficulty in convincing her that was not necessary, was over the top, but she was full of guilt that she hadn't visited grandma for two weeks. I told her to write a letter instead.

No, don't hide your kids from it, but do make it clear that if they have children, famlies or whatever, they must never feel obliged to visit. They have their own lives to live and theirs are as important as the sick relative.

Hope this helps.

Love

Margaret

 

[BeckyJan]

No, don't hide your kids from it, but do make it clear that if they have children, famlies or whatever, they must never feel obliged to visit. They have their own lives to live and theirs are as important as the sick relative

I agree with Margaret completely on this. But then I am also lucky to have two very supportive daughters albeit they still lead their own very active lives. My father had vascular d. and I hope I gave my mother some comfort and help but at the same time giving priority to my then young children and my husband.

Knowing you, Skye, you will do the right thing at the right time - take care. Beckjan

 

[Lynne]

Hi Hazel

Later in on this one, so just adding agreement with others really.

First of all, I'm so sorry (& how hollow & meaningless those words can sound!) for the shock & distress you've been feeling, and hope your spirits are higher today.

I have a question which has been bothering me all night. Tomorrow we're going away for a few days with one of John's sons, DIL and baby.
Do I tell them?
On the one hand, it would be 'good to talk', and I guess I'll find it difficult not to, given that we'll be living at close quarters.

Tell them what exactly? If you just mean the bald statement as you first presented it in your initial post, I would say no to that.
But now that you may be able to take a broader view and see & discuss it in the context of Sandy's eleboration of "statistics" and their actual basis (perhaps even quoting him, excellent as his clarification was) I would say Yes.
Very little "goes to plan" in life, especially life & living with Dementia.

Certainly if I was John's son I would have great difficulty in understanding why I wasn't included in this critical family matter. I would want to contribute to his Dad's remaining time in whatever positive ways possible, not wonder "but what if ...?" afterwards.

.........the truth wasn't half as scary as quessing what was going on.

As the daughter of my Dad, who died of cancer without us being able to discuss it, I thoroughly endorse the above.

Best wishes, enjoy your break.

 

[Margarita]

As the daughter of my Dad, who died of cancer without us being able to discuss it,

That how it was in my family

when my uncle died of cancer , they would never discuss it , I only new he had cancer when he died , this was 10 years ago , even then they would not talk about it

 

[Canadian Joanne]

It's an educated guess

Hi Hazel,

We were told at my mother's diagnosis 6 1/2 years ago that the disease (AD) could run from 2 to 20 years but typically lasted 12 - 13 from onset. At that point, it was estimated that my mother probably had 8 years left.

She's in a wheelchair, doesn't speak coherently, doesn't feed herself well, is completely incontinent but there can be one H*LL of a determined glint in her eye. Will she last another year and a half? Who knows? Looking at her now, I think she'll last longer. Is that a good thing? I don't know, it depends on how the disease progresses.

It sounds to me that you and John still have many good days ahead of you. Live in the moment as much as possible and try to remember that doctors are just people doing their job and are not infallible.

Keep your chin up.
Love
Joanne

 

[Skye]

Certainly if I was John's son I would have great difficulty in understanding why I wasn't included in this critical family matter. I would want to contribute to his Dad's remaining time in whatever positive ways possible, not wonder "but what if ...?" afterwards.

Sadly, Lynne, John's son doesn't see it that way. He didn't want to know. The holiday was a disaster, and John hated it, so we came home.

Glad to be back with people who understand.

Love,

 

[Tender Face]

Oh Hazel, so sorry it didn't work out - just saw your post ... unfamiliar surroundings????

Not meaning to ask questions ... just tell as and when you need to .... and hope you find the 'break' you need for yourself here ......

Love and hugs, Karen, x

 

[Skye]

Thanks Karen

Combination of self-obsessed son, rain, self-obsesed son, noise, diarrhoea, self-obsessed son, depression, tears, self-obsessed son................you get the picture?

 

[BeckyJan]

Hello Skye - you are with understanding folk now. Just read your post and cannot find the right words to say sorry - but I am!

Take care of yourself now Best wishes Jan

 

[connie]

Hazel, could not help but notice: John's son,

John's son doesn't see it that way. He didn't want to know. The holiday was a disaster, and John hated it, so we came home.

Glad to be back with people who understand.

Now I really do understand.

What is it with some people: it's their mum, dad, partner, But they can't cope

Not coping is nothing to do with "not understanding"

Wrote today to Lionels oldest friends, posted pictures, brought them up to date.

Who didn't I contact: precious son and daughter: they cannot cope.

Love and understanding to you and John. Take care,

 

[Whiskas]

Hazel

So sorry the holiday didn't turn out well, you needed that break. We will all have to have a virtual holiday at least that would turn out just as you would want it to, with people who understand. No disasters allowed!!

Take care of yourself.
Cathyxx

 

[gill@anchorage5]

disappointing news....

Hi Hazel

How disappointing for you! I'm sure I speak for many when I say I was so sorry to read that the "break" didn't work out as we all hoped for, for you both.

Perhaps John's son is just scared of facing up to the reality of this awful illness, and by spending time with John - he had no alternative but to witness it first hand?

Difficult I know - but try to put it behind you. You tried to do your best for all concerned & sadly it didn't work out. Presume this is not an experience you will be in a hurry to repeat with the same relations - but hope there will be more enjoyable breaks for you both in the not too distant future with better (& more understanding) company - you certainly deserve it.

Thinking of you both

Gill x

 

[sue38]

Hazel,

I'm so sorry it didn't work out. Sound off as much as you like. I've had a bad day with my Dad and typed a long email to my sister cataloguing everything that went wrong. By the time I'd finished typing I felt much better and felt it would be unfair to send it to her when she is so far away and can do nothing about it except feel guilty that she is not here (until she comes home for a month in August!).

So sent her a brief email with just the bare facts. Much better.

I'm sorry John's son didn't want to know and couldn't support you and John. Those are his issues and you are so strong, but you can't be expected to take on his problems on top of your own. It sounds like you are better concentrating on John (and yourself).

Welcome back.