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So Much Pain


Registered User
Hello all,

Have spent the last couple of hours going through the threads & reading reply's, every one hits a nerve or tear duct. So many questions & so much pain in peoples lives, I feel for each & every one of you. People ask how long is a piece of string?, The only answer can be, no string is the same length, some are longer than others.

Sorry I'm Jon & new to this site,

Joan, my wife, was diagnosed with dementia 2001 and was prescribed Aricept. Over the early months the changes were quite slow, but as time passed by, Joan new she could not manage things that used to be easy for her. Slowly her life was being eroded by this insidious disease.

The start of 2007 Joan was still on Aricept & I'm sure that it was this drug that gave Joan her quality of life up to this point, but the dementia started to progress at a faster rate
over the next few months & there comes a point when drugs are no longer viable, so in July Aricept medication was stopped.

Joans decline continued to the point were eating & drinking became a problem & I was no longer able to move her around the house. Arrangements were made and Joan went in to a home for nursing care. Joans fluid intake continued to decline, sad to say Joan passed away in October, she was 62 & we had been together 40 yrs.

So yes, I feel the pain that people here are feeling, I also have other feelings loneliness, guilt, sorrow, emptiness & anger.

So my question that can never be answered, What did My Joan do to deserve this


Registered User
Oct 20, 2007
Hi Jon
Welcome to a TP. I'm also quite new to this. I just had to reply to you. So sorry to hear about your wife Joan, really am. My Mum was 68,been married 49 years,passed away in September and was also called Joan. We are all going through the emotions you mentioned, it is such a terrible time. I feel like my heart has been ripped out and cannot deal with not seeing her. Do you have family near to you? Keep posting whenever, I think it will help a little speaking to other people that know how your feeling and what you've been through and are still going through.
Take care Jon, Love Nickyxxx
P.S Yes, I ask myself that one all the time'what did my Mum do to deserve that vile illness' I think we'll be asking that one for along time Jon..
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Grannie G

Volunteer Moderator
Apr 3, 2006
Hello Jon, welcome to Talking Point.

Please accept my deepest sympathy and sincere condolences on the loss of your wife. She was very young. She did nothing to deserve this, no-one could be said to deserve dementia.

The loneliness, the anger, sorrow, and emptiness are part of grieving, but please get rid of the guilt. I don`t know you but I`m sure you did your best at all times. That`s what we do.

Please keep contact with TP, there will always be someone who understands.

Take care xx


Registered User
Hi Nicky , Thanks

yes have two married sons, the eldest lives at Slough. The youngest at Nottingham who flying out to New Zealand Dec 27th
to give life a try out there for a couple of yrs. Fingers crossed it works out for them,
Cheers & thanks


Registered User
Mar 7, 2004
Hi jon.You quote:
Have spent the last couple of hours going through the threads & reading reply's, every one hits a nerve or tear duct.
Well I am sitting here, having just returned from visiting my lovely Lionel, and crying at your sad story.

So young. Life certainly isn't fair, although it never came with a guarantee.

Thank you for sharing with us, and for sympathising with those who are still on this journey.

My condolences to you and the family. (Hope everything works out 'down under' for your son. My younger brother emigrated to NZ earlier this year)


Registered User
Hi Grannie G

Now look, this aint right, how can I call a bright young thing like you Grannie, I'm older than you & it's disrespectful:)

I think the guilt feeling comes from the things you know
you should, or could have done better at the time but didn't because you were so tired & weary.

Thank you Jon


Registered User
Oct 16, 2007
manchester, uk
Hi Jon

I am so sorry to hear of the loss of your Joan. I myself have recently lost a relative to this terrible condition and know some of the things you may be feeling.

Welcome to TP and I hope you find the comfort and support here that I have.

Take Care

Grannie G

Volunteer Moderator
Apr 3, 2006
Just call me Sylvia, Jon. I`m older than your dear wife was, I can assure you. :)

think the guilt feeling comes from the things you know
you should, or could have done better at the time but didn't because you were so tired & weary
It`s easy to have the energy when the need is no longer there, but we all know what `tired and weary` does to us. It`s because we know, we know you shouldn`t feel guilty.

Love xx


Registered User
Jul 31, 2007
I always ask WHY ?????

Dear Jon,
Welcome to Talking Point. I am so sorry that you have lost Joan to this herrendous illness. My husband was diagnoised at the age of 58, and he is now 62 in the last stage in a E.M.I.Unit.
Each time I visit, I come away and my heart breaks. Returning to an empty house is horrible. I cannot call it home anymore because Peter a kind, gentle, loving man who I married 17 years ago, 4 step-children who loved him and had a bond with him that they never had with their natural Father. As for the 6 Grandchildren, he has always been a hands on Grandparent. The devestation is on the whole family. We are a very close family and I could not have got through the last 4 years without their love and support and thank God I found Talking Point. This will be my firt Christmas without Peter here and he would dress up as Father Christmas for the Grandchildren. To top it all, it is our wedding anniversary two days before Christmas and he does not even remember marrying me. Although I have been disabled for 21 years,instead of him watching over and protecting be, it became roll reversal. Guilt, I have felt that so many times just as most of the people on T.P. My consellation is the family, friends, Doctors, Consultant have all said I could not have done anymore for Peter. Still in my mind and in my heart, I am in tears- could I??
My thoughts are with you and take care of yourself.
The illness takes away our loved ones but it cannot take away memories, they are precious.
Best wishes. christine


Registered User
Aug 29, 2006
SW Scotland
Dear Jon, welcome to TP. I read your post with interest, and much sympathy, because it is so similar to my own experience. My husband John was diagnosed in 2000, and prescribed Reminyl.

His decline was very slow until three months ago, when he was admitted to hospital with a UTI. He is now in an EMI home, because he needs so much care. He's still on Reminyl, but I think he'll be taken off it next week when he sees his consultant. He's declining very rapidly, and now sleeps most of the time. Three months ago he was very fir physically.

I know all about the loneliness and guilt. We always feel we could have done more. But realistically, I know I couldn't, and so do you.

Please don't be lonely, there's usually someone here to talk to.

I'm so sorry you have lost your lovely wife, and I know we can't replace her, but perhaps we can take your mind off things for a few moments.



Registered User
Thanks To you all for your Comments, Let me add a bit more to my post, as you will know to go into greater detail would fill a few sheets of A4 paper, but I would just like to say this

Joan & I were quite private in our life style home, family, a holiday or meal out so life was good. Joan was happy to be at the wedding on the two days our sons got married. as the dementia progressed, in 2006 She became a Grand mother to a little boy also couple of months later a little girl, she didn't seem understand they were our sons children, it was so sad.

It was 2004 & looking after Joan had become a full time occupation, I had to take her with me every were even for the weekend shop. Trying to push a trolly & keep hold of Joan was hard work, a couple of times as we cruised the isles with the shopping trolly Joan had grabed hold of another little old lady, so I had two of them in tow.

It was at this time Flintshire Social Services came into our lives. I must admit I needed help but I was very dubious if this was the way to go. I now say they were great, a lady came in twice a week for 2hrs, F,C,C had a club for young people with dementia that was 10am to 3:30pm every Tuesday (free) A bit later on Flintshire Alzheimers Society ran a day care centre for
YDS on a Saturday again free. All this gave Joan new places to go & new things to do & people to meet. Me I could go shopping without starting a conga line. OK so the home care I had to pay for, well worth it.

Flintshire Social Services and the Alzheimers Society for North East Wales realy are first class, so please investigate the ones in your area. They can help in so many ways,

Good night all
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fearful fiona

Registered User
Apr 19, 2007
Dear Jon,

I was so sad to read your message and read how you have, like so many of us, been touched by this terrible illness. My heart goes out to you for losing your wife at such a young age. I think we all wonder what we and our loved ones have done to deserve this.

My father is called John (wrong spelling I know) and my mother is called Joan. They are very old - 90 and 88 respectively - and at the beginning of October I found them a wonderful nursing home that could cope with both of them. Sadly my mother who has Alzheimer's refused medication and could not be looked after properly in the home, so is separated from my father because she had to go into the psychiatric unit at the local hospital.

Throughout all this I have had the best support I could have from TP and I'm sure you will too. Family are not always to be relied on and friends try to be sympathetic but usually have "not been there". That's where TP comes in because everyone is affected one way or another and we all know how each other feels.

All the best.


Registered User
Apr 15, 2007
spoiler said:
So my question that can never be answered, What did My Joan do to deserve this
Dear Jon, welcome to TP. I am sorry for your loss, dementia is just one of life's unfortunate happenings.

Dementia is sad at any age, but, particularly sad for ones, so young. My mum was 76 when diagnosed, she turns 84 next month and has been in care 6 months.

Life's road sure is hard at times and as carers all we can do is our best. I think it is not uncommon to doubt ourselves and feel guilty but the reality of the situation is, caring for someone with dementia is very demanding, both physically and emotionally.

Jon, I hope by joining with TP you'll find your not alone and by sharing your situation will help you through these difficult times.

Caring Thoughts Taffy.

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