No man's land

[jc141265]

I have no more questions.
He's got nothing left to lose.
I don't need to ask, is it part of the progression of the disease...? do other dementia sufferers do this? can anyone tell me how to deal with this problematic behaviour?
I'm so tired of the sadness, I'm so sad that we couldn't stop it, I'm so sad that he has a body and mind that won't do what he wants them to, even now my body and mind screams at me, do something, there must be something you can do to make him better, to save him, to get him back. And then it says, 'I know, ask Dad, he's always got the answer.' Its like I can't remember that I've lost him already which is understandable to some extent because he's still here.
And so it goes, on and on, everyday and I am just waiting now, waiting, not for him to die, I'm past wanting/needing that release. I'm just waiting.
I feel lost on here, because I no longer need to know anything. And quite often what I do know is better coming from someone who has only recently gone through the issue themselves, because I am no longer in the same frame of mind as some one who isn't waiting yet.
I feel old. I want to help but I don't speak the same language as the young folk on here. (This is coming from a 33yr old!)
I will continue to post however as a 33yr old doesn't have many peers that she can otherwise talk to about such feelings and because when I see someone asking questions that I know the answer to, or can empathise with I want to help. But forgive me if I sound...like I am just...waiting...

P.S. I know there are other 'waiters' out there (not under the employ of a restaurant), but we all seem to go quiet in our old age...

 

[connie]

Dear Nat,
Yes, there probably are a lot of 'waiters' on TP.

Maybe some are like me. I haven't given up on may man (I would never do that). I have had to come to terms with the disease.

I cannot make his life better, I can only try to ensure that he is kept as comfortable and calm as possible - without resorting to drugs.

We have to learn acceptance, both of their capabilities and ours.
Nothing, short of a miracle, will make my lovely Lionel any better than he is at this time, still not yet 67.

So I try to rejoice in the time I still have with him, even though I have no knowledge of how much of Lionel is left in his frail shell.

It does not matter. He is still with me somehow. My world will be empty when he is gone.

 

[christine_batch]

Dear Nat,
Bless you. You could have been writing about the way I feel about Peter.
Deep down in that shell is the man I loved and married. I feel in complete limbo. Taking each day as it comes waiting for that blasted telephone call.
In all of this, there is still us trying to cope.
During this journey we have gained knowledge and even if we are able to help one person to impart experiences to, we would have supported someone else.
I wish there was an easy answer but there is not.
Sending you best wishes and understanding.
Love from
Christine

 

[helen.tomlinson]

Dear Nat

I feel lost on here, because I no longer need to know anything

You really touched my heart. Our situations are so different but I could feel into what you were saying and admit that sometimes I feel like it. Then I realise that I'm not using T.P. just for information or advice. It's hard to admit but mostly it's the contact. The contact with you all makes me feel less alone and I really value that. However, I suppose a day will come when I wont need it and that will be another turning point (another goodbye)!

I've always seen the forum as a therapy group (although I've never attended one) and sometimes there's nothing to say but enough to just be there listening and being a part of.

My heart goes out to you.

Love Helen

 

[gigi]

Hello Nat,

What a sad post....

'I know, ask Dad, he's always got the answer.'

...

I still think that about my own dad..he died almost 5 years ago from pancreatic cancer..I took time out to look after him for 7 weeks until he died...

A year later my husband was diagnosed with Alzheimers/Vascular Dementia...

And I had a recently widowed mother who was elderly and lived a 70 mile round trip away from me..and wasn't coping well..a son who tried to commit suicide..and a job to hold down...

I don't mention these things because I want sympathy..I don't. But I did struggle with myself at the time. I didn't know about TP then...

At 55 I feel old too...my life is on hold...I too am "waiting"..just like you..and many others here...

There are no answers...we are all different ..as Connie says...

We have to learn acceptance, both of their capabilities and ours.

Dear Nat..you obviously care very deeply about your father..
accepting is not defeatist..it's facing reality.
Accepting, making the most of any small moment, treasuring memories...and waiting..
That's what I'm doing....when I can. TP is my lifeline..and you are part of that lifeline...the communication alone helps me through...hope it will be the same for you....

love gigi xx

 

[Grannie G]

Dear Nat

I`m not waiting. It is still too early for me to be waiting.

I`m living with it, as an older member, with an older husband, with gratitude for the generosity of spirit and support, provided by other members.

We are all at different stages. We are all different ages. And we all have people we love with different needs.

I`m sorry you feel lost here. I`m sorry you feel because you no longer need to know anything TP cannot help you.

Take care Nat.

Love xx

 

[Skye]

Dear Nat,
Yes, there probably are a lot of 'waiters' on TP.

Maybe some are like me. I haven't given up on may man (I would never do that). I have had to come to terms with the disease.

I cannot make his life better, I can only try to ensure that he is kept as comfortable and calm as possible - without resorting to drugs.

We have to learn acceptance, both of their capabilities and ours.
Nothing, short of a miracle, will make my lovely Lionel any better than he is at this time, still not yet 67.

So I try to rejoice in the time I still have with him, even though I have no knowledge of how much of Lionel is left in his frail shell.

It does not matter. He is still with me somehow. My world will be empty when he is gone.

Connie, that is beautifully put, and exactly how I feel myself.

I am not waiting, I am cherishing every day John and I can spend together. I expect nothing, every day is a wonderful bonus.

I too have no more questions, but I have had so many valuable answers that have seen me through some very difficult times.

I still post about John because he is still the most important person in my life, and it helps to have him with me on TP. The messages of support help me so much when I am depressed.

And I post in response to others' posts when I feel I have something to offer, even if it's only a few words of comfort.

And I'm 70, and I feel YOUNG!

 

[Brucie]

Hi Nat

I, for one, would feel bereft if you stopped posting here!

Your posts are clearly written with huge insight, and right from your heart. The very feelings of waiting are those that so many of us feel, waiting without any idea of the duration, and I don't actually believe that calendar age has anything relevant to say to us.

I was born middle aged and have been on the downward [or perhaps upward] path ever since.

I know 80 year olds who feel younger than I, and also 17 year olds who might be my old man. You are as young as you feel and by golly, I feel in need of carbon dating.

The key to the relevance of your posts is that you clearly can express what so many of us feel.

I will continue to post

brilliant!

 

[sad nell]

thank god for nat

nat you have always touched me, you supported me with pm and brought honesty and laughter into my life, you have been blessed with an ability to express your self that few people have, myself included, please be aware of how much you contribute to tp.and it would be sad day i did not see your name appear on this forum. all my love pam

 

[jc141265]

Thank-you for your support, its what I needed at a very low moment.

Of course I cherish Dad, as I said the waiting doesn't relate to me waiting for the end, its just simply waiting. Anyone who reads most of my posts knows I think he's the most wonderful man on Earth...in that this disease hasn't made me feel old, its frozen me in time as a little girl waiting for her Daddy to come home.

Helen's post made me realise what I mean by the waiting, I too don't necessarily use TP for information or advice, its the having a group of people with whom I can relate...and that's why I felt alone. I'm 33, been doing this for about 10-11 yrs now, first 3 years relatively easy though increasingly full of worry, 7 years hard and almost 1 year waiting. All this in a time in my life when I am supposed to be building a successful career, married and having children of my own. I am in a minority to start with having a father so young with this disease, I'm not really young and just first coming to terms with the disease, and neither do I have children or other family concerns that take priority over my concern for my father.
In my life there is no time to be rushing about, enjoying my father's company and having cups of tea and coffee with friends who can relate in some way. I get up in the morning I go to work, I get home in the evening cook dinner, clean the house if there is time and then I sit down and study for my C.A. to 11 o'clock in the evening, popping in on TP to get some relief, from the emotions that rankle inside that I have to try and put aside for the majority of the time for now. I watch about a maximum 3 hrs of TV a week. Weekends are also just study and the odd venture out to the shops.

When I finish this damn study, I want to go spend time with Dad, but I am terrified I won't finish it in time but goodness knows I put my life on hold too long already. When I am finished this study the first thing I am going to do is find a nearby old folks home and go in for meal times to help out if they want me.

I too post on here to try and offer support, but I remember when I was back there, I wanted passion and hope, I wanted to hear that people weren't accepting this disease either, weren't calm and placid and I wanted to hear that I wasn't alone thinking that this was the worst thing ever to see my Dad go through this. But nowadays, I've come to terms with it, I can answer a post on choking for example with good sound practical advice, but thats it I'm practical and sometimes even cheery and I remember what it was like to be distraught and having the more experienced patting me on the head and saying nevermind dear there's no use fighting it, just accept it and cherish the good things. I remember that I wanted at times in my grief to shake those people and say stop it, stop giving in, stopping behaving as if it is all okay, so each time I post now I feel sorry in a way for the person I am replying to, sorry because I have a grim knowledge of what is in store for them and I can do nothing to help them but to say that that they will get through it. Sound words of advice, but I remember back then, it was not what I wanted to hear, its still not what I want to hear...not accepting the disease hasn't led me down the path of not cherishing the good moments, in fact I think in a way it has exaggerated them and made me really aware of how wonderful Dad is and how blessed I am to have had him in my life, and how much I want to see care and support provided for sufferers and carers alike to continue to improve even after he has gone.

I know I know most people aren't like me, and like to simply hear that it will be alright. I need support just like anyone else but support for me is to hear of other people's passion, that other people can understand, that other people don't want to accept it either. That is what support is to me. I don't want to tell people to accept it. I still want them to fight it kicking and screaming to the end, but I am no longer in a position to demand that without conscience stepping in and asking me 'Are you sure Natalie that this person can handle your passion? Do you have a right to be unsettling their applecart? What if they have been fighting and can't do so anymore?', when I am no longer in their shoes, or even more painful ones, when all I can do now is wait...thus for the most of the time, I just sit back and wait. I offer a bit of practical advice when I can, at other times I offer just simple understanding, but people can see it in the posts where I ignore my conscience at times, I'm still hubbling and bubbling with passion.

Lastly a special thank-you again to those who replied, and got me, you eased the loneliness, a thank-you also to those who replied with good intentions. Neither you nor I can help that I refuse to sit easy with this disease.

 

[Margarita]

in that this disease hasn't made me feel old, its frozen me in time as a little girl waiting for her Daddy to come home.

ts frozen me in time as a little girl waiting for her Daddy to come home.

I can so relate to . They I was 42 years Old my father just pass away mum being told she had AZ .

I felt that child within me coming out crying oh so much crying for that protection,Stability, security that I felt my father gave me as a child then into adulthood . They I was left with my mother who never felt like a whole person unless mum was with my father, left me frozen in time in my mind of all those childhood memories, wanting it all back to how it was .

Then it click in me My mother father are no longer they to protect me like I would want them to . I let let go, I move on from those childhood memories , also my attitude how parent are meant to be , I'll alway ( we all ) have a child within us .

I came to the conclusion if my parents can not longer show me the Love we onces shared as a child Or how we would of like to been loved as as child . I would travel back into my past in my mind see myself as that child hug love that child in the same way as I love hug my children .
Sometime that child within me came out to play , but she does not cry no more .

For me I'll never except my mother dementia / disease. I don't play no waiting game waiting for the time mum passes away as I don't want her to die even if this disease is changing her My mother yes has a have brain disease, but I don't see it,Only the symptoms that the disease give her . To me mum still a whole human being, she not the disease . the disease will win even taking my mother dignity, but it never win or take my Love for her in how I felt it as a child Or how I feel it now for her as an adult

This song says it all in how I cope .

http://music.yahoo.com/Whitney-Houston/Greatest-Love-Of-All/lyrics/621605#lyricstop

And if by chance that special place that you've be dreaming of

Leads you to a lonely place

find your strenght in love.

 

[Lynne]

To the "Waiters" amongst us

I wonder if you realise how much (at huge cost to yourselves) you give so generously to those of us who are still in the earlier stages of this ghastly journey.

In a sense, none of ever wanted to learn the possibilities and potential of this cruel condition on our lives. Inside me at least, there was a coward wanting to stick her head in the sand. But 'be prepared' isn't just for boy scouts, knowing your enemy gives one half a chance of meeting it on level ground and takes a bit of the shock out of new developments.

The Waiters do the rest of us a huge service, whether they know it or not. The pooling of all this hard gained knowledge is such a force for good & support. I can think of nowhere else where I could have got such empathy and humanity, so freely given.

 

[BeckyJan]

I still want them to fight it kicking and screaming to the end

I admire your thread and you. Please keep posting - we need your views on how this disease has hit you.

Yes, I still want to fight and scream, but unfortunately energy is sapped and there are other practical things to do, other than kicking and screaming.

You have made me realise how important it is to continue the fight even after our loved ones are at peace. I hope I can do that.

Love Jan

 

[Norman]

Dear Nat,
You have no questions,I have no questions.
If we put together what you know, and what I know, add a little bit froms different posts and the result will be helpful for some one who does have questions.
For those reasons you and I must keep posting because we can help others.
We know that there is no happy ending we must make the most of the time that we have left with our loved ones,by seizeing precious moments we can make some moments of happiness for them and ourselves.
I am one of the older members and I can relate to you.
Keep posting.
Norman

 

[Tender Face]

I feel lost on here, because I no longer need to know anything.

On that issue, I can empathise totally, Nat. Some months back when it was evident mum's cancer was about to overtake her dementia I felt I no longer 'belonged'. I know you are saying it for slightly different reasons .....

Am I defunct here because mum will never see 'end stages of dementia'? - does that negate mum's and my experience of dementia so far? - or might I be of use to just one other member who comes along and is faced with the same 'double whammy' my mum - and I know others - have encountered here .......?

Shall I quit now and say dementia doesn't matter to me because now my mum will die with it not because of it?

Shall I forget the support I've had from TP, AS, Action on Elder Abuse, Age Concern even now Cancer Research ......? Or shall I just make sure I've got a mental note to keep all my angsts on the back burner - and long after mum has gone - still go out there kicking and screaming once more to the breach and do whatever I can to campaign about all the 'wrongs' I've witnessed already on this journey?

Yes, sometimes the hubbling and bubbling has to be put on simmer, but you've got too much to offer, Nat, not to allow that pot to boil occassionally ..... when the time is right for you .... I am convinced you will move forward and use your talents to great good for others, besides your devotion to your dad .... in fact, because of your devotion to your dad ........

Is that enough hubble and bubble from me for now?

Much love, Karen, x

 

[helen.tomlinson]

Dear Nat

I love that you are able to be so open.

I, personally, feel a bit odd and often wonder whether I fit in because I often don't feel the same as others. I don't feel like kicking and screaming and fighting the disease - I wish I did just to be able to fit in. I feel absolutely determined (that passion) that my husband, Alan, will have the best that I can possibly give him with the abilities he has available at any given time. I am aware that his abilities are becoming more and more challenged but I just adapt myself and events around these changes.

I absolutely dread (in a hidden place within) the time that Alan cannot benefit from my passion. I never dwell on the dread and if it comes I just let it pass - but it is there somewhere.

I also feel absolutely determined that this disease, or these diseases, will not rob me of my life (unless I contract it) and when the time comes I will let go. Of course, there is probably a long way for me to go yet and I can always change my mind!!

I think your story is really valuable and I could imagine it published but I suppose you have enough pulling on your time at the moment.

You have my respect and I wish you all the best

Love Helen

 

[citybythesea]

Dear Nat,

I could have wrote that letter back in January or February. I've spent more time pondering a saying "wait broke the bridge". I personally think that they were drunk. I too got to that point. The point where you need to talk because you really have seen most of it. I stayed here and am doing more for AD as I feel it is a cause worth my time. When you go thru this it's like walking into a wall over and over and each time the wall changes...one day it may be padded but the next it is brick. There's not getting over the want of a parent that you much love back to the way they were....it's only something that comes with time. It's not a matter of giving in to a disease that is cruel...it's not a matter of accepting the disease ...it's a matter of your mind.

When mom started rapidly deteriorating I spent many days feeling as you do. She always accepted me as I was and was my best friend. I would move the moon for her if I could have....but alas I couldn't and I had to realize that if I could not do that I could surely give her the best of care. She had home health and I don't recommend it because it is mentally draining on the carer. She also saw some of the very best doctors in that field, I soon found myself in the position of realizing that her death was only a part of what is life. The unfortunate part is that with Alzheimers there are times you feel (as the carer) that they are livng death. As I lost each part of her a piece of me was lost forever, but I chose to hold my good memories of her. Those memories made me strong for her they made me realize that maybe AD would take her this time she still had a long and prosperous life. Now, just as you wait I also wait. I wait to walk in her room because the memories of her last months flood in and torment me. I go to a center that caters to Alzheimer patients and I help them for a few hours each day. I do this because even tho when she died I felt peace for her I still find myself in the carer mode. I find myself angry at people who can just walk away....so I wait and I try to help others that don't have someone who loves their parent as we do. Over time I too will have finished waiting.....I hope you to will have that peace. In the meantime know that TP is here and we will all wait together....and some of us will continue to fight AD because we have not given up....we have chosen to fight this battle till it decides to fight us one on one. Hopefully by that time the fight will no longer be there because so many of us have chosen not to give in and continue to champoin our cause.


Sorry for the lenght and I do send you many HUGS from across the way.



HUGS

Nancy

 

[j.j]

dear nat
I too am a waiter, i came to tp in the beginning frantic for answers. I am weary now. I feel selfish that i take from tp much more than i can give, your posts have helped me feel less alone, especially your poem keening
j.j,

 

[jc141265]

I'm truly touched by what everyone has said. Thank you all for making me feel not so alone after all.
You've given me new faith.