View Full Version : Difficult day

5th January 2015, 21:57
We went to see my GP today and found my consultant had contacted them to say she was worried about both of us. I broke down and cried, unusual for me. The GP was so kind and held both of our hands. She has referred me to the palliative care section at the hospice to see if they can control this terrible drooling. We have also called social services for an assessment. I have tried to be strong and positive, but the whole condition has got on top of me. Hopefully I will come through it soon.

5th January 2015, 22:16
Hi Trevor;

Sorry to hear this but it might be for the best. It is horrible to be like it but you will be strong again. I do hope Nettie's OK as it's so hard for you both. i hope this brings you closer together and you get your drooling sorted.

Hugs, love Terry

5th January 2015, 22:21
Trevor, I know it sounds strange but sometimes breaking down in front of professionals let's them know just how bad things are for you and gets things moving quicker. It sounds like you have a very caring doctor which is fantastic for you both.
I'm so sorry you feel so wretched and I hope the drooling gets sorted REALLY soon.

I'm sending you much love and strength and a MAHOOSIVE hug!

Pink xxx

5th January 2015, 22:23
If only your house would sell and you could start looking at bungalows. All that waiting and wondering causes its own anxieties. Will you please post your Rightmove details again on Facebook and I will share it around all my buddies. Anything is worth trying, isn't it?
It is all such a shame when everything gets on top of you. Hugs to you both. Joycie x

5th January 2015, 22:28
Thank you so much for all your kind comments and support, it means a great deal.

6th January 2015, 07:31
Although having a different form of MND (ALS) to you Trevor I understand your flight. I had part of my palliative care team here yesterday going over a fall I had last week. The fall is part of the disease's progression and it chokes me up to say it.

The condition is apt to make us laugh and cry - not always when appropriate or intended.

I think it mighty unlikely that any of us can be strong 24/7 - myself included. Allow yourself some release.

Best wishes.


Nettie B
6th January 2015, 14:15
It was a relief to see Trevor crying to be honest. He has been abnormally brave since his diagnosis in March and it all had to come out eventually. I've cried so much, especially if someone ... friend or doctor ... is nice to me. This doctor was exceptionally warm and lovely. She is just what Trevor needs yet it was a sheer fluke that we saw her as the usual doctor was away. She wants to see is both every fortnight in order to keep an eye us both. This is the NHS I worked in for 30 years and was proud to do so.This is how young idealistic doctors dream of treating their patients. Somehow I feel the gloss won't rub off this one.
Trevor will get such sensitive care from this young lady. I can relax a bit as this is so one major worry off me!

6th January 2015, 14:29
You and Trevor are very brave and my respect
I wish there was more I could do for you both, but I am always available for a rant, chat or even just to listen
Dave xx

6th January 2015, 15:56
I showed my husband my post which I put on on here on Sunday, he cried and hugged me tight! I try too hard to stay strong for the both of us because I don't want to be a burden on him. I need to let go and let people in to help me, difficult when I have run my own company for over 30 years and have always been an 'organiser'

6th January 2015, 16:11
Jan, I have just been for my hospice assessment and had this very conversation with the nurse. She said you have to accept that you cant live the same way you always have - you have to put systems into place for everything now. She wants me to keep a walker in the bungalow for support - no way, Jose! This bungalow was jam packed before I married Peter in April - now it has got all my stuff in it!
I am just trying to keep going in my own little way as long as I can. When the time comes to sit down and not move about, I will know -but it aint going be yet! I don't want to be dependent on Peter, or be a burden on him. Joycie xx

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