Down but not out

[LindaB]

Having a fall is horrible...really shakes you up. Barry52 the meal sounds amazing beats my beans on toast. Take care🤗

[Barry52]

I’m bouncing back already thanks to your lovely comments. I have somehow learned to keep my head up when falling and it must be instinctive. Not to be deterred I cooked pan fried salmon and ginger tonight but Sue served up. I will be on ready meals tomorrow as I’m dining solo. Some of you will know that my wife has an apartment and we only meet for 4 days every 2 weeks but it works for us. The carers among us will understand the situation and it gives us some freedom as well as maintaining my independence. From the outset Sue said she would never be a carer and I accept that when the time comes I will seek help from an independent source. We know that this disease puts a huge burden on our loved ones and this is how we deal with it. I’m not decrying the dedication of those who care for partners living with MND but we all have a way of coping.

[Bowler]

Barry52 Great you are bouncing back. As for your domestic arrangements we all have to do what’s right and works for us but please becareful around your home. Chin up…oh you are already doing that 😁

[Positive vibes]

Barry52

That is an incredibly difficult and brave decision for you both to make... I am only at the start of helping my Dad and I understand where you are coming from. It is exhausting already and we feel this is only the tip of the iceberg. I thought hard about being his carer, and decided to do it as much for me as for my Dad... but I know, with how Mum is, we need carers as well for him, so need to talk about this now...

[Heather R]

Barry I'm so impressed with your cooking, and how you cope with things. Take care x

[denise]

Barry It's good that you could both talk about the situation and come to an arrangement that suits both. Love to both of you.

love and hugs Denise xxx

[Barry52]

Positive vibes, when I read about your situation my concern is for your welfare. Your dad with MND needs professional help as will your mum over time and if you carry on at this pace it may be you next time. Love is such a strong bond but maybe you can offer your parents tough love and step back a little. I’m sorry if I am lecturing but I hope you understand my thoughts.

[Ellie]

Barry52 It's great that you and Sue have that type of relationship in which non-judgemental, adult conversation can take place.

Notwithstanding your own situation Barry, it must be particularly tough for partners and family members of people with PLS, who potentially face decades of being with that person, rather than providing months or years of care in the case of ALS.

Stay upright and enjoy the salmon in ginger.

Love Ellie.

[LindaB]

I’m bouncing back already thanks to your lovely comments. I have somehow learned to keep my head up when falling and it must be instinctive. Not to be deterred I cooked pan fried salmon and ginger tonight but Sue served up. I will be on ready meals tomorrow as I’m dining solo. Some of you will know that my wife has an apartment and we only meet for 4 days every 2 weeks but it works for us. The carers among us will understand the situation and it gives us some freedom as well as maintaining my independence. From the outset Sue said she would never be a carer and I accept that when the time comes I will seek help from an independent source. We know that this disease puts a huge burden on our loved ones and this is how we deal with it. I’m not decrying the dedication of those who care for partners living with MND but we all have a way of coping.

Sounds like you've created the right set up for you...so perfect. I live alone 🎻🎻 I know sad😁 so when needed I will use a care agency etc. Probably a PA or live in carer...will cross that bridge at some point.
Salmon also sounds perfect. 👩🍳

[Positive vibes]

Positive vibes, when I read about your situation my concern is for your welfare. Your dad with MND needs professional help as will your mum over time and if you carry on at this pace it may be you next time. Love is such a strong bond but maybe you can offer your parents tough love and step back a little. I’m sorry if I am lecturing but I hope you understand my thoughts.

Barry52

Thank you for thinking of us all Barry especially when it sounds like you have your hands full yourself.

The MND nurse team have been gently prodding us to get carers, especially now the discussion is turning to palliative care and feeding tube for Dad, and I am noticing he is forgetting to take his meds/supplementary drinks too.

This is going to be tackled soon...