Kindness

[Lanie]

Hi

I wanted to just share, how moved I am by the amount of support given on this site to perfect strangers and the only thing we have in common is a relative/friend with some form of dementia.

It gives me great comfort to know that there are people who really care about other peoples plight and no matter what they are going through themselves, can find the time to help others.

In the society that we live in today it really restores ones faith in human kindness, that there are still people who genuinely care, brought together by a disease that so few understand unless it has touched their lives.

Thank you all for caring.

My thoughts and prayers are with everyone who suffers with a dementia and their carers and that we can all find the strength to cope.

Lanie

 

[Grannie G]

Thank you Lanie

What a lovely post.

It is true, we come as strangers. However, dementia is our common bond and although so tragic, it plays a part in our not being strangers for long.

Love xx

 

[terry999]

Lanie - its not just this site.

During my mum's wandering stage, memebers of the public found her and stayed with her for upto 2 hours while I got there.

We live in London, where if you read the papers people would step over a dying man. I've been amazed at the people who saw her thought "something ain't right" and stepped in. Too many examples to list.

People bash this country a bit too much..

All the best..

 

[Luca]

Hello. I too found much kindness and help when I first used TP and still do. I am trying to hedd the advice I read about and I am not so 'unhappy' with the situation as I once was, althought some days are so difficult. I have just 'found' Ring and Ride' bus service and B and I will use it to get out of the house more often. TP will help you. Love Luca

 

[Lynne]

Perhaps the only 'positive' thing we can wring from dementia IS that we can help each other by sharing our experiences, awful (or sometimes funny) as they may be.
There is so much kindness here, I am awed by it.
(There is also pain, anxiety, stress & despair, but at least here we can share those feelings in a place where they are understood, not dismissed.)

 

[Canadian Joanne]

There is a wonderful line in the play "Streetcar Named Desire".

"I have always depended on the kindness of strangers".

It seems to be particularly appropriate for TP, where strangers have become close friends.

 

[jc141265]

I think perhaps people on here are so kind and so ready to help out because we ourselves have had firsthand experience of not being able to immediately find help when my god we needed it. All of us on here know so well how frigtening/disheartening/distressing it can feel when you desperately need help, but don't know who to turn to, or even if you have someone to turn to, don't know where you can find the actual practical help you need.
Also there is at least for me, a certain...selfishness (?)...probably not the word...to it. This damn disease is so disheartening, seems so unfair, makes it hard to see the point to life, but each time I can help someone due to my own experiences, I can at least feel that some good has come of it, it hasn't all been for nothing. It helps to ease the pain of seeing a loved one go through this if you can feel like at least you can reduce the pain of someone else as a result of it.
But otherwise yes, this is a wonderful and truly unique website and I hope everyone continues to strive to keep it that way. Sometimes when everything in life seems like sh** it can be hard to maintain an upbeat, open and friendly spirit...but I think most of the time we do it. And everyone on here should be proud of that, they are providing a great service to others and then that service continues on with the new members as well.

 

[harvey]

I would agree wholeheartedly about the truly kind people on TP.

I came to TP in the depths of dispair when my MIL was diagnosed with dementia. My husband and I were like a pair of zombies, we just did not know where to turn. After reading the posts on TP and being given advice, it was like a huge weight being lifted. It is so difficult to explain to anyone how exhausting it can be looking after a loved one with this awful disease, the full impact is only really felt by those doing the caring. As with many TP members there are just the two of us as other family members keep their distance! The TP family go a long way towards making up for the absence of 'close' family members.

Regards
Polly

 

[BeckyJan]

My husband is in 'respite care' - I feel like I am in hell!
The nurses looking after my special hubby are like angels caring and understanding him - that is KINDNESS.

In the midst of all this I find care and understanding from very special people and TP. Where would I be without it??

Love Jan

 

[Lynne]

My husband is in 'respite care' - I feel like I am in hell!

Love Jan

Jan, how much longer to go?

.

 

[Margaret W]

You are all lovely. Just to say, sometimes some of us get cross, maybe at the system, maybe at our supposed loved one, often at ourselves, so if we get shirty (this is me!), please understand and be accepting.

Most people are great at that.

Love to all

Margaret

 

[Helen33]

Just reading this thread has me in tears. Really. I feel very vulnerable this weekend. I don't feel too well again which is very unusual and I don't know why. I can only think that it must be stress. I am not ill but I am not well. I am finding it hard to do anything at all but just sit there and mope. I can't believe this is me. I am an energetic, buzzy kind of person but I often feel like I'm being poisoned from the inside. This disease is like a poison to me, slowly robbing Alan of his life and slowly robbing me too.

The people on TP are the only people on the planet that have any idea how awful one can feel at times. Then, hopefully, next week (or maybe this afternoon - who knows) I will feel o.k. again.

Love

 

[TinaT]

Dear Helen,

What an emotional sea saw this journey puts us on. One minute we are thrilled and excited by a little glimmer of 'the old self' and the next down we go on the sea saw to hit rock bottom and suffer the awful, overwhelming feelings of despair.

The wonderful thing about TP is that we share both the highs and lows of the sea saw with each other and, in the wee small hours or whenever no one else is around to help, TP is still here for us.

xxTinaT

 

[Skye]

Dear Helen

Sorry you're not feeling well again. Could be the virus still, they do tend to hang around and strike again when you least expect it.

Then again, it could well be stress. It's that awful gnawing worry that eats away at us. What will be the next stage? Will we be able to cope? ......... And then the sadness at all we've lost, all our dreams of happy retirement .......

But at least you know you're not alone. I hope you're feeling better this afternoon, but if not, take comfort in the fact that so many of us understand and sympathise.

Love,

 

[Grannie G]

Dear Helen.

I did a double take when I realized you have only been registered with TP for 2 months. I feel I have known you for ever.

And this is what it may all be about.

I don`t know whether Alan has deteriorated in the two months of your membership, or whether, forgive me, you were in some state of denial, or whether your sharing of symptoms on TP has brought home to you the reality of the really depressing prognosis.

It may be the after effects of the virus, the onset of winter, shorter days and darker nights. It may be a combination of everything.

I think it happens to all of us at times, it certainly happens to me. Most times I feel I can rise above it, after all I`m not the only one, there are thousand of others in similar situations. We have had better times than many others, we shouldn`t be greedy.

Then something knocks me back and reminds me of what we have lost, what we have been deprived of, what we are missing out on.
I see the torture in my husband`s face, as he struggles to fight against this condition. I see his naivety as he believes he is getting better.

I see to some extent the lie I am living, pretending everything is all right and my tears flow too. And that`s the stress.

I do hope it will be better for you tomorrow Helen.

Love xx

 

[Margaret W]

Dear Helen

You sound exactly as I was in the early days (and weeks/months) after mum's diagnosis. Normally an enthusiastic, busy and practical person, it all knocked me sideways emotionally. I rarely cried, but would just "not feel well". My appetite went, I would sit at the kitchen table for ages unable to muster up enough energy to read the paper or make myself a cup of tea.

I'm afraid I'm still like that on some days, even now we are 15 months on, though getting less so now that she appears to have settled into the care home environment.

Try to take each day (or half day) at a time, get as much rest as possible, try to eat if only small amounts, and get back to us on this site whenever you want and for whatever reason.

Love

Margaret