my final thread on Susie

[pete kelly]

I start with a broken heart,numbness,and the torment and sadness I never new was possible. On Monday my Susie was admitted to hospital, her mind ravaged by her illness,I was not able to get any one to be able to help me look after her at home,our consultant who was with us took the desicion out of my hands and came with me when she was admitted.It is very very unlikely Susie will come home again.

I can not begin to explain how my two young daughters and I are feeling,we are grieving for Susie, and missing her,I have not been able to visit until she is settled in,am frightened when I phone in case they say she is distressed. My final poem will be in the poem section later, as I will not write anymore, no words, will ease our heatache.

I will cary on my fight for better understanding and help for people like my Susie and their families, I will carry on hopefully not alone lobbying MP's to realise the damage is not just memory, The help we all need,better training,and assistance,finacially and emotionally.

I am sorry to say my thoughts on the Alzheimer's Society are not where I would have liked them to be,I truly have not had very much support even when I wrote to them for advice,and begin to wander who is gaining out of what they do,I am not bitter, just very sad. Talking point was a godsend,enabeling me to share my thoughts and concerns with you all,and the support you showed me, Thank you so much.

 

[Grannie G]

I`m so sorry Pete.
You and your daughters are understandably heartbroken and there is nothing I can say to ease your pain.
I`m also sorry you are so cross. The illness is no one`s fault and is so devastating very little can be done to help families.
Whatever help and support is given, will never take the pain and heartache away.

 

[sunray]

Pete, there is no need to leave Talking Point. You will need to come on to tell us what is happening to you and your family as well as what is happening to Susie. This is not the end, it is just another stage of the disease and what it takes away from you.

I know I will not be able to look after Ray at home forever for a multitude of reasons, mostly that he increasingly needs help day and night and I function poorly without sleep! But when the time comes for him to go on into care my caring days will not be over and as problems arise I will need friends who know what life with dementia is like to talk them over with.

You are so emotionally raw now, and I would be too. But time will soften that and life with assume another "new normal" for you and the girls.(((HUGS)))) for the journey ahead.

Sue.

 

[Brucie]

Hi Pete

I was in your situation in 2001, I thought my world had ended, but my Jan is still with us, well cared for as possible at the home she was admitted to after hospital. A number of times I have thought a hospice would be more appropriate, but, in reality, this was not the case.

Dementia can be a long, long road, and Talking Point can be helpful and supportive even at this stage.

 

[Helen33]

Dear Pete,

I am so sorry for you, your Susie and your children. It truly is a heartbreaking time. I have just read the poem and it took me all my time not to burst into tears - it is so wonderfully expressing your feelings.

Personally I feel it will be a shame if you are silenced as you clearly have a wonderful ability with words and I would hate for the silence to become a self-imposed prison for you.

I am glad that Talking Point has been helpful to you in your journey and I believed it was provided to us by the Alzheimers Society. I did receive a lot of help with my husband but evenso I am left with the experience that without Talking Point I would have been left to it and if I had received assistance then it would have been the wrong kind of assistance. It was only TP that gave the right information and empowered me to search and fight for what was required. I agree that an enormous amount needs to be done to drag dementia care and understanding out of the dark ages and into the light. I think if the sights are set on the equivalent of Hospice care (but for the living) then it will be a good start.

Love to you and yours

 

[sad nell]

Pete and family i am so sorry to read that your lovely wife has been admitted to hospiral, and understand how you miust be feeling, when i replied to your poem post , i was not aware that your wife was in hospital, sorry Pete, stay with us here on Tp we need you, take care Pam

 

[Winnie Kjaer]

Dear Pete and family
My heart breaks for you and I cannot find words to express how sorry I am.
My thoughts are with you all and please may you find the strength required to get through all this.

Susie now needs your love more than ever, and you need support with getting the strength to give it to her. Please continue to write with all your friends here on TP, we are all rooting for you.

Love x

 

[lucky]

oh go i am so sorry am thinking of you and your family i was so sad to read your thread. you look after yourself and family take care xxxx

 

[Padraig]

Pete, Oh how I feel for you. The journey is made so much harder when people that are meant to give even moral support make it feel like you're grasping at shadows.
Yes it's a sad fact that I feel the same about the Alzheimer's Society as you do. My wife and I finished our journey alone. All I wanted to do was help others by offering our story with photographic evidence, medical records and videos of our journey. My first email to the AS was on the 12 May and all I've received up to the 17 June, after a number of reminders; 'out of office will get back to you.' It would have been better to receive a reply; 'sorry we can't use your contribution.'
The wonderful support on TP helps so many and like others on here you are in my thoughts and prayers. I wish you and your family well.

 

[Michele]

Dear Pete,

This horible illness is just so unfair... How dare it do this to you, Susie and your lovely daughters. Of course your hearts are breaking.

Stay with us Pete - we will help you as much as we can. We are all here for you.

Sending you all loads of hugs and love.

Michele
xxx