We just wanted to say a very heartfelt thank you for all of your kind supporting words given after my post on Geoff’s passing. This site and its followers and supporters are the most compassionate people 💕 I have ever had the pleasure of being part of!
Doreen and I will always be so very thankful for all your help in answering questions and offering advice. We will stay in touch and hope that a cure is found sooner rather than later as this disease is horrendous beyond words. We send love and big huggles to sufferers and loved ones experiencing this journey.
We have been arranging Geoff’s funeral and have decided that we would like all donations to go to the PSP Association in memory of Doreen’s hero.
Thank you all once again and when I get the chance I will reply to you all.
Michelle xx
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Flutterbyes
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Michelle you are a great support to Doreen. She is really lucky to have you. You are lucky to have her too. She seems like a very caring and loving person.
When the funeral is over it is still very difficult. I have had a bad day today and my husband has been dead since February 2017. Lots of tears today though for no specific reason. I just miss him and that's it I suppose?
Anne thank you. It has been a sad day for some reason! Guess I am just feeling alone? You think you will get over it in some time given you to do just that. Sadly it doesn't work that way! I just feel lost without him.
I get the sense from Heady & NannaB that grief is "non-linear" - sort of 2 steps forward, 1 step back, and takes much more than 1-2 years to evolve to the 'new normal' feeling...
Yes it certainly is one step forward and two back. I thought I was doing alright but then the tears came. I found it hard to cry at first in fact I felt frozen. Maybe shock? I seem to be making up for the tears unshed recently. 😢
My tears haven't started yet Marie, I'm desperate to let go and have a good sob. I think that when nursing Ben I had to be strong and block the tears, otherwise would have been next to useless. I need to let that guard down now but it's just st not happening, maybe after the Tribute Day they will start. I'm reading a great book about grief called ' it's OK That you're not OK' and helps you with understand yourself and your feelings and about how unhelpful people can be by passing trite comments about the way things will be for you soon. I know they are only trying to be kind but think we need to rethink our views on grief and how to live with it.
That's exactly how I was!! I was told at the funeral by a couple of people that I was bearing up well. Inside I was in bits! Anyway my experience is that the tears do come. Sometimes at the most unlikely times too. Just let them come when they do. If others can't deal with it that's their problem?
I was like you when G was ill being strong and trying to ask the questions he couldn't ask and knowing the truth inside.
So Kate a big hug to you and you will get there. You were a great wife and carer to Ben. He is in a much better place now. Maybe having a drink with my G? If so they will be glad we all have each other.
Marie and Katie, I'm going to seize the moment and ask you: What could people say to you, ( e.g. at the memorial or wherever) that wouldn't sound trite or fake? That wouldn't sound like they don't have a clue..??
Things like 'It will get easier as time passes' or You are doing amazingly well' What do they know about how you are feeling or coping. I know they are just being kind and trying to protect you from the hurt but I would prefer someone be be more honest and open and ask how you are feeling and coping rather than trying to make you feel better about things. Sounds simple but it seems to be how people cope with the embarrassment of asking when it's such a delicate subject. Basically it's about honesty and not brushing over the truth of the matter.
Thank you Kate. I will have people in my life (as well as so many on this site) where I will otherwise fall into that same 'trap'. Your comments are valuable.
Oh Marie bless you it’s so hard. I think what’s worse is watching a loved one deteriate in front of your eyes and there is absolutely nothing you can do to make them better. It will be a long hard journey for us all especially Doreen as when you care or have cared for someone for many years ( even when they were well) you have a void that is difficult to fill. Friends and family help but it’s just not the same. We wouldn’t be human if we didn’t have our emotions. I am sending you a special huggle ( I am assured they are good!! ) and smile and take a few moments to remember all the good times .
Please accept appologies for this late response. I am so sad and I've been thinking of you since I saw this post. My prayers are with you and your family.
Unfortunately (and I might post this) I rarely can get on the computer unless I have someone here that I pay for to sit with Charles. I can see the emails on my phone so I keep up but sometimes can't repond until later.
But I do connect with my heart and my tears and share with you.
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Drama at every step - update
my hero Geoff 
"Why am I so tired all the time?"
