How Long?

[Skye]

I'm feeling devastated tonight.

I have the day's posts from the PPA forum emailed to me, and there's a new thread running about the prognosis of the disease.

I appears that the typical prognosis at diagnosis is 7 - 9 years. Apparently for the first 6 - 7 years the main symptom is loss of language. Then the damage begins to spread to the rest of the brain, giving the more typical AD symptoms.

Thereafter, decline is rapid, leading to death, usually from aspiration pneumonia, within two years.

Several posters have said this is exactly what happened in the case of their loved one. In most cases, they were physically fit until the end. John has certainly shown marked deterioration in the last year, though he's still relatively well.

I know there's nothing certain about this disease, but it has panicked me. I thought we had years ahead of us still.

I could do with a hug tonight.

Love,

 

[Natashalou]

aw

poor you. hugs. (( ))

 

[gill@anchorage5]

Hugs & reassurance

Hi Hazel

I do think each case is different - my Dad is 14 years down the line now & is still having "good days" for which I am so grateful.

Thinking of you & sending a virutal hug (we all need them)

Love

Gill x

 

[Tina]

As you say, Hazel, nothing about this disease is certain, but I can understand you're feeling panicked.

And even though patterns seem to emerge, i.e. loss of language, then more rapid decline and often death from aspiration pneumonia, there are also plenty of cases where the decline was either even more rapid or much slower...

It has often been said on TP that no two cases are the same, Hazel...and even more often have I heard and felt in the past few days, weeks, months and years, that the "not knowing" is the worst. It's different from person to person. You say John has deteriorated but that he is still relatively well...chances are Hazel, that you have many years together ahead of you yet.

But I can understant that, when you hear what that future might hold, you're scared. But you can't really do anything about it and just have to wait for things to happen, or not as the case may be. And it's a horrible situation to be in. But, and I only just saw your post Gill, there are plenty of examples of good days yet to be had even if John, or anyone else, is years into the disease.

Sending you a smile :-D.

Hugs, Tina xx

 

[sue38]

Hazel,

I'm so sorry. The only thing I can say is, that if I have learned anything, it is that when dealing with dementia nothing is certain and nothing goes to plan.

Sending huge hugs and give John a hug from me.

Keep strong.

Sue xx

 

[jenniferpa]

Big hugs for you from me too.

Love

Jennifer

 

[Kayla]

Dear Skye,
I think we just have to take each day as it comes and try to make the best of things, enjoying our loved ones while we can. Mum seemed to be very settled and she was recovering from her tummy bug, when she had her fatal heart attack. It was a shock to everybody, but presumably could have happened at any time. She didn't have any blood pressure or heart problems as far as we knew.
I'm very sad to have lost Mum, but at the same time relieved that she doesn't have to suffer any more. It is harder for me to have to live without her any more.
I hope you are able to share some quality time with your husband for as long as possible and his health remains stable.
Kayla

 

[Tender Face]

In very different circumstances relate to a feeling - of 'I just got used to the feel of this rug and now someone's pulled it from under me.' Comes as a short, sharp, shock (to me) when I've buried myself in some kind of denial for a while that there might be an 'upward slope' on this course ...... or at least some infinite 'even keel' .....

I'm wary sometimes of reading too much ..... the future can frighten me and stop me coping with 'today' ...... but then fore-warned is fore-armed????

Feel like I'm not doing much but quoting song lyrics these days (but music being one of my own means of 'therapy') ... immediately thought of Paul Weller's (to me classic) words: 'The more I know - the less I understand'.

Sorry, that was my very long-winded way of sending you a hug .....

Karen (TF), x

 

[Cliff]

Dear Hazel,

The love you have shines through everything you write here on TP.

I joined just two weeks ago feeling very lonely. But the love in so many postings has really lifted me and helped Dee as well.

Now, Hazel I hope you can feel that love coming your way tonight. You deserve it for all you are doing - Cliff

 

[Brucie]

Hi Hazel

I appreciate your distress.

Sometimes information can be less, rather than more helpful, I think.

I'll never know for sure, but in your situation I think at this point I'd sit down and think a bit.

You have a worst case situation. But it may not happen that way - perhaps there is a best case somewhere. One that is less bad.

You and John will be sitting somewhere in between the two.

What can you do to increase the chance of your situation being to the better end, rather than the less good end? Probably exactly what you have been doing already for quite some time. You probably cannot influence much more that that.

So I'd be thinking mostly about what I could do to make both our lives as good as possible for as long as possible. Which is most likely exactly what you have been doing, again.

At the back of my mind would always be that every new day is a bonus day, rather than a count down. While appreciating that, I would also be asking myself those ghastly questions of "what then...". As the world's greatest procrastinator, the reply would probably be that I'd cross that bridge whenever - but realise that I may be crossing it sooner, or I may be crossing it later, I cannot know now.

At the end of all the thinking I'd shake myself and say "what a waste of time. I'm going to live for the time we have now; if I worry all the time it may come to an end soon then I'll never be at ease enough to appreciate what we have"

All my own thoughts, but then I'm in a different situation. Seeing Jan as she is now - she had another fit the other day - I tremble at the thought that her hell will last any longer at all. Not for my sake, but for hers. It is just such a cruel disease.

Take care

 

[Skye]

At the end of all the thinking I'd shake myself and say "what a waste of time. I'm going to live for the time we have now; if I worry all the time it may come to an end soon then I'll never be at ease enough to appreciate what we have"

Thank you Bruce. I know that is what I'll do -- tomorrow!

Tonight I'll just wallow, because my brain has shut down.

All my own thoughts, but then I'm in a different situation. Seeing Jan as she is now - she had another fit the other day - I tremble at the thought that her hell will last any longer at all. Not for my sake, but for hers. It is just such a cruel disease.

I understand your feelings completely, and would feel the same in your position. One of the posters said that the good thing about PPA is that sufferers don't last long in the final stages.

Perhaps tomorrow I also will feel that's a good thing.

Thank you all for the words of comfort and the hugs. I need my friends tonight.

Love,

 

[Grannie G]

Dear Hazel,

To read a prognosis in cold print, so unexpectedly, must have been like having the rug pulled from underneath you. I`m so sorry it happened this way.

It`s going to be difficult now for you to tuck that information away and get on with the rest of your lives. I don`t know whether or not you`ll be able to. I don`t know whether or not I`d be able to. In a way, it`s like having a new diagnosis.

All your friends on TP are here with hugs. The best hug would be between you and John.

I`m so upset for you.

Love xx

 

[connie]

Hazel, you and I are sharing a similar path. Our past circumstances are so similar.

Your John and my Lionel however are not similar. What shapes the way our lives go? It is not just the illness, whatever the prognosis may be.

It is living together, enjoying every precious moment. Who knows, we may both have many more years than we realise.

Noticed today, I have now known Lionel longer since diagnosis, than undiagnosed. Strange times.

You have all my sympathy for your feelings tonight. Connie special coming up.
Stay strong, love n'hugs

 

[Skye]

Sylvia and Connie, thank you.

Tomorrow I'll be better. It was just such a shock to read all the posts tonight. There's so little information available in this country, and our consultant didn't give us any prognosis.

I was so pleased that John was deteriorating so slowly, I had no idea the end stage could be so fast.

But you're all right, it might not happen. Once I'm over the shock, we'll just carry on as normal -- nothing else we can do, really!

Connie, your hug is so special, just what I needed.

Love,

 

[Norman]

Dear Hazel
please do not worry about what you read.
As you know my Peg was diagnosed 13 + years ago with Alzheimer's disease.
Only in the month before she died did she go down hill rapidly.
Even then I spemt every minute I could with her,we were told that maybe there was a chance of some recovery of her mobility and speech.
We had hope, but it was not to be,5 days in hospital and she decided enough was enough and checked out.
Hazel do not worry about what mught be,I did my own thing "Day by Day"and that is the only way with evil disease.
Thinking of you
Love
Norman

 

[Sandy]

Dear Hazel,

Lots of really supportive messages coming your way, so I don't feel I can add much except to say that, given how rare PPA is, I doubt if there are many reliable figures on the progression of the disease. Even with AD and VaD where there is much more data, there are wide variations between individuals.

Doing a bit of research tonight, I found one study that was based on a total of 49 patients. While it said that 60% of the study sample died after a median course of 7 years, individuals' survival varied hugely - from 3 to 17 years. It just doesn't pay to put much emphasis on such small amounts of data with widely varying results.

Take care,

Sandy

 

[Nell]

Dear Hazel,
Just wanted to add my own {{{HUGS}}} and let you know that I am with all the others reaching out to support you. You do so much for everyone else. As Norman so wisely says, this is indeed an "evil disease".

 

[mel]

Dear Hazel

Big hug from me too

i can only echo what others have said.....nothing is certain with this dreadful disease...... All I can offer you is to live for today(not much consolation I know)

I believe, in mums case, she would have gone on for years....it's just that her fall resulting in a broken hip hastened her demise. Up to then she was a feisty lady.....

Hope you are feeling a little better today

Love xx

 

[Skye]

Thank you all for your support and advice. Norman, I know your advice is good, and I always keep your 'Day by Day' in mind.

Sandy, those statistics are interesting -- particularly the 17 years one! Nell and mel, I appreciate the support, it's so precious when you're feling low.

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.

On the other hand, is it fair to upset them about something that might not happen? Also, he is not the most supportive of the sons, given that a) he has a baby, and b) he lives a long way away. So would it cause upset to the other two if I confided in him first?

I'm going round in circles here. I'd really like some advice from the younger members about how they'd feel.

Thanks.

 

[Cate]

Hi Hazel

Bless you, how does the saying go, a little knowledge is a dangerous thing. But I do sympathise, I have the personality where I need to dig and dig until I find things out, such as the ramifications of mum not taking her meds, then I could kick myself, I would be better off not knowing. Please try to enjoy the moment, and let tomorrow take care of itself, (I know, easier said than done).

Should you share your worries with your son, I would say yes. He is a big boy now, (although, probably like me with my son, he’s still my ‘little boy’, all 6’ 3” of him).

Your son has a family and responsibilities of his own now, I'm sure he would prefer to know how things are, what the future may just hold, (but who really knows for sure).

I know we try to shield our children from the realities of life, but sometimes we need them, just as much as they need us.

Love

Cate