DAD - MND diagnosed now. What next?

[Positive vibes]

Thank you for the update about your dad. I’ve been wondering how’s he’s getting on. I hope the you all can now get some much needed rest, love Lynne x

Lynne K

Your welcome... what is this thing you call rest? x

[Positive vibes]

Hi Positive vibes gosh there is alot going on. I hope you are all okay and your Dad is settled back in the hospice. Take care 💕💕

Daught21

He is, but, he's exhausted by all the effort and anxiety of getting home, and then going back again... thank God the infection isn't C-19.... xxx

[Positive vibes]

Positive vibes Just a very big HUG from me to you, all your family and Dad.

Richard

richard

Thank you, and to you and yours too...

[Positive vibes]

Positive vibes Many thanks for the update. If your dad feels that he gets the most appropriate care in the hospice, that's where he should be, hard though that may be for the family.

Sending hugs to you all. xx

Ellie

It is tough because I feel I have failed him... when he wanted to be home... Mum and Dad were able to hold hands at night across the single beds and that's gone now... sadly he started to sleep in the chair instead, in the other room... bloody heart breaking I hate this disease...

Hugs to you and yours too, thank you xxx

[Positive vibes]

Positive vibes . Sending big hugs to you and your mum and dad.

You must be exhausted but one day I hope you will feel very proud of how you have coped throughout this heartbreaking situation. The love you have for your dad shines through your messages.

Love Debbie x

Deb

Thank you, hugs to you and yours too...

I am swapping the matchsticks propping up my eyes for lolly sticks.... lol...

Love my Dad to bits, and it still doesn't feel real sometimes, then we visit him and the reality hits us all over again... the nurses love him there, although sorry to see him back, I don't feel proud, I just look at the things I still need to do....

Love to all

PV xxx

[Lynne K]

Lynne K

Your welcome... what is this thing you call rest? x

Time for yourself to switch off and chill xx

[Positive vibes]

Just to let you all know, Dad has trialled and now refused his assisted breathing machine, I think its called a NIV?

We are feeling very low, although the nurses said he had given it a fair try, and fully considered the consequences of refusing. They said some patients adapt and some find it too difficult/stressful. He is no longer having LVR - physio for his lungs, or even nebuliser, as I asked him. Hasn't done much exercise with his physio as he needed to be room restricted because of being at home for virus quarantine and testing... at least he still has NG tube for feed/fluids/meds. Although he is now questioning the meds he is receiving and I am wondering if he will refuse those too...

We are facing the reality of his choices, that he doesn't want to prolong this now, but God it is hard. In one sense we want his suffering to be over. In another we don't want him to go... my poor old Dad....

[matthew55]

I don't know if this helps but I stopped NIV ages ago and I'm still breathing. It sounds like you're very brave dad has made a decision that not just anyone could make. I salute him. My heart goes out to you. x

[Ellie]

In one sense we want his suffering to be over. In another we don't want him to go...

That's the eternal dilemma of love, isn't it?

Hopefully the hospice is keeping you informed of how your Dad is really doing, especially regarding his breathing, so you all know what's what.

It's 'good' that he's continuing to make his own decisions.

Big hug to you all xx

[Positive vibes]

I don't know if this helps but I stopped NIV ages ago and I'm still breathing. It sounds like you're very brave dad has made a decision that not just anyone could make. I salute him. My heart goes out to you. x

matthew55

Thank you for that, it does help... His calmness and bravery is astonishing. He isn't an extrovert chap, always reserved, more a listener than a talker. He just has this quiet strength which amazes us all. xxx

[Positive vibes]

That's the eternal dilemma of love, isn't it?

Hopefully the hospice is keeping you informed of how your Dad is really doing, especially regarding his breathing, so you all know what's what.

It's 'good' that he's continuing to make his own decisions.

Big hug to you all xx

Ellie

That is so true...

They are - his breathing isn't too bad thankfully...

It is such a roller-coaster. I remember the relief we all felt when he finally did accept the NG tube, we were on a high, just grateful he was still going to be with us. And then the downer we felt when he said no to a NIV, worry when he had an infection, happiness when he recovered... it just feels like we are all going through this with him every step of the way. After all the drama, stress, changing everything to get Dad home to a safe environment, and then changing it all back again when he went back to the hospice, with Mum keeping herself too busy to think, she finally had an early night and it all hit her at once. That he isn't coming back... she really cried terribly for him...

I know its selfish, but a part of me is willing him to fight on, even knowing how it is taking a toll on him. He has just been such a quiet but dominating force in all our lives it seems unthinkable he isn't going to be a part of it... but I guess that's how a lot of us feel when its one of our parents.

Sorry if this is a downer...

Big hugs right back to you Ellie and all your loved ones, and to everyone else out there. xxx

[Deb]

Oh please don't say sorry Positive vibes . You are going through such a heartbreaking time and showing such strength.

Sending you hugs and thinking of you x 😘🤗

[Mary C]

Hi PV
The dilemmas we who have MND face daily are not only personal to us but impact on our loved ones.
I too chose not to continue with the NIV as found my sleep was more disturbed wearing it.Of course this may impact on my breathing sooner rather than later but I hated wearing the mask and opted for better nights sleep without it.

I wish I could protect my family from watching my decline but as they know I hope to end my days at home then there is no choice.
Each one of us is on our unique journey and while I am still up to it I intend to make the most of each day.When our bodies are almost worn out no doubt there is the likelihood of umpteen physical problems with breathing, infections etc.

I really hope your dad has a peaceful day and I hope you are confident in the hospice team keeping your dad as comfortable as possible at this stage.
Your poor mom is grieving too for the man she has loved even though he is still here life has changed drastically for them both.She no doubt is feeling lost and has her emotions to deal with.
It’s so hard for you PV watching both parents trying to cope as well as dealing with your own feelings.Love hurts at times.
Thinking of you
Mary

[matthew55]

I'm NIV free but I think my hands will go before my breathing. 😉🤗😁😍xx

[Positive vibes]

Oh please don't say sorry Positive vibes . You are going through such a heartbreaking time and showing such strength.

Sending you hugs and thinking of you x 😘🤗

Deb

Thank you, and to you and your family too x