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afraid and unsure

debby

Registered User
Mar 17, 2005
3
hull
Hi the children and myself are trying to come to terms with the news that Simon has fronto-temporal dementia, alzheimers and parkinsons for good measure our lives were fine till last June when he became ill he was an active man a police officer till he was hit on the head whilst on duty and now he is incontinent needs washing dressing feeding the specialist at Addenbrookes told us he has the maximum life span of three years from last year when things happened I spend the nights crying and sitting staring at him because when his sleeping tablets kick in and he is asleep he looks like he always has before this living nightmare started there are times when I feel the need for company but when in a crowded room I feel so alone I feel like Im screaming inside and no-one hears me I long for someone to put there arms around me and tell everything will be okay yet when anyone comes near I don't want them to touch me all I want is Simon back to how he was he doesn't speak much now and I have been told his speach will go for good in the next few months and I feel afraid of what is happening as I don't understand it I feel so unsure of what life holds for me and the children Simon said he would always be there for us and now he is in another world yet visible to us and he is leaving us behind a little more each and I wish he wasn't I wish he was taking me with him if anyone else has felt or feels like this I want you to know that I'd like to hear from you strength comes from within so I keep being told well my strength comes from seeing the odd look of recognition or little smile on Simons face and for now that is all I feel I have
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi Debby

I'm so sorry to hear of your situation, which is one that is, at its root, not uncommon.

There are lots of us here who are in a similar situation, though the precise kind of dementia or illness may not be identical, nor the stage it is at.

It is awful for you and the children - and of course for Simon. There is no easy coming to terms with it either, when someone you love is hurt so badly, and when you won't have them around for anywhere as long as you had hoped.

I have also experienced visiting my wife Jan only to find she has been left in bed just a little longer because of a bad night. As she sleeps, all traces of her dementia are gone from her face, and I almost expect her to open her eyes and know who I am. Amost.

With the best will in the world, attempts to define just how long a patient will have are just that - attempts. It could be longer than 3 years for Simon, or it could be less time.

The key thing is to repeat an oft mentioned mantra here on Talking Point - live your lives day by day. Make the most of every day you have together.

Loneliness is so common as well, and that is often made more difficult because we don't want to be with other people, we just want our loved one back. I hated being in company.

My wife Jan's speech went some time ago, and she is blind, and is even losing the ability to crawl the past couple of weeks. Of course, she doesn't seem to know me, though I always hope......

I've felt all the things you mention - and worse, though that may not seem possible.

Please feel welcome to dump out your feelings here on TP. We have all done it from time to time, and have all felt the benefit of a virtual family of caring people here.

Ask any questions you need answers to.

You WILL be able to have a future, but now is not the time to worry about that - fate will determine when the time is right. For the moment concentrate on making Simon's time as good as it can be - while ensuring that you look after yourself and of course the children.

I'm so sorry that things are so bad at present. Please take care of yourselves.

Very best wishes
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,186
68
Dundee
Hi Debby

While my own situation is nowhere near as bad as yours I do sympathise so much. As you say one day at a time is the only way through this. That and appreciating the good times - even though those may be very small and few and far between.

My thoughts are with you.
Take care of yourself - for your own sake and for the children.

Izzy
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Dear Debby
so sorry to hear of the situation that you find yourself in.
Every ones situation is different but most of the feelings and fears are common to all of us.
My wife goes to bed early,I sit and do what I am doing now.
When I get into bed she is fast asleep, I look at her and there is my Peggy,I feel so sad because I want her back the way she was,but that can never be and I dread the future.
I feel very lonely,some times she will put her arms around me and tell me how wonderful I am,I wish it was as it was.
Debby we are of different age groups,at a different time of life but we are all going down the same road.
Come back to us as often as you feel the need,you will always find support here
All very best wishes
Norman
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Dear Debby, so sorry to read of your situation. I emphasise with the 'alone' position. Please try to hang on to all the good memories you have of Simon.
My thoughts and prayers are with you and the family. Connie
 

debby

Registered User
Mar 17, 2005
3
hull
thankyou

thank you for being here for listening not judging and for understanding for once i feel my tears running down face are from a little relief that I am not really alone but learning to come to terms with my new family come friends I know now that I am not alone in watching my loved one sleep and don't feel weird about that thank you for your words I am so glad to have been told about this site by kate dawson the nurse that has seen most of my tears at addenbrookes today I was told they are letting Simon try Aricept for two months we started on 5mg tonight I feel like we have been giving the world thankyou all for being here love Debby Simon Andrew Jonathon David and Aimee x :)
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi Debby

I'm so glad that the members of Talking Point have been able to help in some way.

Take things slowly, and use this forum as often as you need to!

Well done on getting Aricept prescribed.

Best wishes