This disease so angers me

[h_eclair]

I really struggle evey day to believe this is happening to us my mother is the most fantastic person in the world. We found out she had EOAD last year just after losing her dad to cancer , she is 55. I have 5 children who she has had much to do with and love her soooo much. Her last specialist appointment revealed she has 3-5 years, HOW CAN THIS BE?????
Most days she is fine, others she is midly confused, but her doc said he didn't want to elude us. She had to give up her work as a civil servant and take early retirement. Is EOAD more degenerative? Mum asked my brother how long did she have to live and he said 10 years (she was gutted) she asked me and i said rubbish, she 'd be around forever I'm lying to her is this right? Her influence on me is ......undescribable!! The best birthdays, easter bunny , father christmas(until i was 11) happy holidays, cuddles, understanding and sooo much love. These things are eating away at me . She was always tolerent of my friends they all called her mum, she dealt with so many issues alone. She was the best Brown owl, Sunday school teacher, Rainbow leader, (what more can i say) Just such a positive influence in people's lives. I JUST DON'T GET IT

She lost Her Mum young her husband and her dad WHY WHY WHY??? Life seems unfair.

 

[Brucie]

Hi,

I'm so sorry to hear about your mother - she is just a bit older than my wife was when her symptoms started, so I know the feelings you have.

First thing to say is that no-one really can predict how long someone with dementia has before them. My wife is 14 years into this now, and could be around for another 12 years. Most likely not, but there's no predicting. Each person is different.

Some have disagreed with me, but I think people with Early Onset seem to fight more, and thus can have a harder time of it sometimes. But my, how they do fight! I'm so in awe of them. At the home where my wife lives, the younger people with dementia generally seem to last a shorter time than those who are older.

Perhaps this is because they sometimes have vascular, rather than Alzheimer's, perhaps not - I don't know their precise diagnosis.

My only advice is to forget about how long Mum may have. Enjoy every second you have with her - your children too! Take the time you will have together on a day by day basis.

Her condition will get worse, but always remember - even when the time comes and she seems to be a stranger and may not seem to know you - she is still your Mum. She will be inside somewhere, desperately trying to communicate with you. Try to adjust to her new persona, as she will be doing, even if reluctantly.

You have a difficult road to travel, but always remember that she has a far more difficult one.

Best wishes

 

[MrsP]

Dear h eclair

The one thing that you must remember is that no-one is the same; the disease is not the same for any two people, and life after diagnosis cannot be mapped. For anyone to give you a time scale is (in my humble opinion) unwise, as the doctors and professors, however wonderful and intelligent they may be, are not God. They do not know the timing more than you do.

As Brucie said, some people can go a decade into the disease and show no signs of finishing there thank you very much. Part of the agony is the not knowing.

I agree that life is unfair, and that this disease takes over the most wonderful people. But at least you know that your Mum was and still is a wonderful person, and that she has gained the love and respect of so many people. The lives that she has touched will always be a credit to her spirit, and you must never forget and be fiercly proud of that.


Enjoy today, that's all I can say. My thoughts are with you, love Kate x.

 

[angela.robinson]

HI ,please dont dwell on how long ,just try to make the most of whatever time there is ,store up more wonderfull memorys to go with the ones you already have,I was told the average time was 7 years ,but some people could go for 20 .i thought that woud be the case for my husband ,but after a sharp decline he died 4weeks ago exactly 7 years after being diagnosed,with AD,we did make the most of it taking as many holidays as we could manage untill 2 years ago when it became impossible,STAY STRONG ,ANGELA

 

[h_eclair]

Dear Bruce, MrsP and Angela
Thankyou for your kind words, It's just been so hard to face the thought of mum only been around for the length of the prognosis, and at 31 just don't feel ready to lose her. But as you say i must be strong and very thankful for the wonderful time i have had and have yet to come. I have lots to be grateful for and do feel very proud of the lives mum has touched. This website is amazing and am trying to get my sister to have a peep. One piece of good news we see the admiral nurse in a few weeks appointments are hard to come by so yet again grateful

Anyway best wishes to you all and thanks again my thoughts are with you all
xxxx H

 

[zed]

early onset

From what I have heard, doctors seem to often tell families that someone with early onset does not have long to live. But doctors really can't say, it varies so much from person to person. It is true that early onset does tend to progress faster than later onset, but this is not true for everyone. Many people live for many happy years.

My mother was diagnosed a year ago. We were told to expect rapid decline, and told that in 6 months she would need residential care, and that life expectancy is not good. A year later she is still living in her own home, and although the illness has progressed over the last year, she is doing well and has not progressed as fast as the doctors thought.

 

[Brucie]

absolutely correct. No-one knows how long they will have left. No one knows how long they will retain their speech, recognition, etc. Could be a day, could be 15 years.

Live for each day. Assume it will be long term and prepare for that, but also be prepared for very short term, and also be prepared for that.

 

[h_eclair]

lots of positive things!!

It's all being happening, mmse test was all good no decline there this time, biggest noticable thing is mums personality is changing, silly little things but mum snaps and has big outbursts, i know its the Ad. I really think my friends are fed up with my whinging now so have promised not to, and to be more be thankful for the time i've had and the time i have left wether it's 3-5 years or 25 years!!!
Thankgoodness for TP otherwise I'd have been dwelling forever. Admiral nurse was good. Power of attourney sorted so it really is all good. Hopefully one day will be able to advise and feel confident in replying to other peoples dilemmas. This site has truely been the best thing to happen to me(well apart from my hubby and oh so many children) lol - its ok to laugh!!!!! Mum does stiill live in her own home and does manage all things except money, and major house probs, we had thought to move her and where told it would confuse her more and really she is managing so hey prognosis GO AWAY lol
Take care and thanks again
H XXX

 

[rummy]

I feel so very much for your situation. My Mom is 76 and it is devastating to me because we have always been so close and she is such a remarkable person. This last year I have been mourning the person that she was and have been getting used to the one she is now. Just when I think I'm ok with it all, it hits me and I have a melt down. I think that must be as normal as rain though. Give yourself permission to feel bad about this because it really is a lousy thing that has happened to you and your family and the loss is very real. But realize too that the memories that you will accumulate from here on out will be so treasured. I now find pleasure in hearing my Mom hum a tune she still recalls, or clapping her hands in delight just to see me walk through the door. It is precious time.
This is a journey and God only knows why we have been given the task to hold our loved ones hand while we see them through it. The best thing we can do is make their days whether few or many, as full and happy as they can be. When they do pass on, we can smile knowing they are full, whole and completely the person they once were again.
Take care of yourself too !