Having a wobble

[Doggymama]

So today my husband has been put on NIV but not sure he will tolerate it, seems a bit resistant. Wheelchair services coming out to assess him on Monday. Things moving quicker than we had hoped they would. Sometimes it’s all just too much. I try so hard to help him see the positives in what he can still do rather than focussing on those he can’t but it’s so so hard. Much love to all xx

[shelly21]

Doggymama yes its very hard. I also started NIV in May. I was so down when I was told I needed it. But I welcomed it and I'm used to it now.

Big hugs xxx

[Claireflo]

Doggymama sorry to hear that things have progressed, it's difficult seeing the impact on loved ones.

I'm not sure how the NIV process works as to whether your husband can try it for short periods to get used to it? Hopefully NIV will help and he'll feel some benefit from it.

Trying to find a positive, it's good that wheelchair services are coming out for an assessment of equipment that may help. I hope things stabilise, try to take care of yourself as well x

[Bowler]

Doggymama. Alison I think having a “wobble” is almost mandatory for a carer. When I was in the midst of being wobbly I found talking with my oldest friend usually helped sort me out.

Also as things progressed my daughter said to me “dad you’ve got to understand that there are just some things you can’t fix”. That stuck with me and rather than bring me down it actually reaffirmed that my role was to ensure my wife’s wishes were delivered and not what others thought should happen.

Please don’t feel bad for being wobbly now and then.

[denise]

Hi Doggymama I don't think we would be human if we didn't wobble. I leave Stephen and just want to weep. He might be safe, fed and watered but I know hes not happy. So much for the bit of respite I wanted, I'm just trying to think of what I can do to make him happier. Visiting him and trying to be cheerful and feeling anything but. I cant even watch TV because I cant concentrate. I've gone from 24/7 to nothing. Thing is I resent someone else looking after him and the way they are doing it. Sunday 5 on the ward and 4 had chosen cheese and onion pie. Mash looked like smash 😕 and they all left the pie. I offered to take them all to McDonald's.

Alison we can only do our best. 😘

[Doggymama]

Oh you have actually made me cry reading your posts. I can relate so much to them. I am so used to being the one that fixes everything and making it right and with this I can’t. His tears seem endless and it’s soul breaking to see. I feel useless and hopeless that I’m unable to make things better for him. He didn’t tolerate the mask at all last might, even though they had trialled different ones in the hospital and we came away with the one that didn’t set off a full blown panic attack. He has agreed to try it again but I know my husband and pretty sure he won’t accept the NIV. Time to pull up those big girl pants but so much easier to say than do xxx

[denise]

Doggymama have you tried the mask on? I did. Its horrible. I couldn't breathe, ok I know it was set up for Stephen but I thought it defeated the object and having this thing on my face felt like an alien attack. Stephen had this little oxygen thing stuck up his nose. He cant even keep one of those covid masks on so trying to keep this thing inplace was very trying and I'm sure they thought it was me pulling it off. Sometimes it's hard to figure out what is best the healthy option, that has been advised, or the happy option. I took Stephen out for a fag probably not what they would have liked but if it relaxes him then what's the problem?

I've bought a radio and earphones for him so that should keep him occupied though he wont be able to put it on and take it off. Its when I get back from the hospital and I'm alone and so is he. 😞

[denise]

20220816_074504.jpg
I'm just off to get dressed 😯

[Doggymama]

Oh Denise, must be so hard leaving him. Yes I tried the mask and it was awful, don’t blame him for refusing it. His consultant and nurse talked to him about quality of life and if he couldn’t tolerate the mask then he didn’t have to use it as his quality of life is is more important than prolonging it. By the way, love the pants, just what is needed lol xxx

[shelly21]

Hi girls. Denise it was never going to be easy for you. After caring with love for Stephen, no one else will do the job like you can.

Doggymama will your husband consider anti anxiety medication? My anxiety went through the roof when I first tried niv. I broke down at the hospice and they encouraged me to try lorazepam. Basically its a sedative/anxiety med. You only take it as needed. For me I took it at night and I was asleep very quick. It helped with just getting at least 4 or 5hrs sleep. X

[Doggymama]

shelly21 He is already on Mirtazapine, Paroxetine and Lorazepam. don't think they would give him anything else. He was on a ventilator for 6 weeks in intensive care a few years ago after having cardiac bypass and was very poorly. it has brought back some flashbacks for him and not sure he will get over this fear. I don't often give way to the tears but having a bad morning today. xxx

[shelly21]

Doggymama wow no wonder he doesn't live niv. Mentally you are both in a tiz and rightly so.

I hope you both take time to relax a little over the next few weeks. Maybe things won't look so scary then.

X

[denise]

Stephen looked happier today. They supplied him with a radio so hes been groovin and singing. I spent ages tuning in the new radio I bought for him, even cut my nails so as to press the buttons.

Chest clinic have been to visit him and I said I told them off about oxygen. She was very pleased that I said my bit and she said his carbon dioxide levels were high so 😝 to them. I said I quoted medical lpa but they still didn't listen. Shes going to get him a mnd bracelet. They wanted to use a cough assist on him and I said no it's very invasive and he hated it so no! Funny how they didn't say this when I was there.

Stephen said I'm am a lovely looking woman even without my mask on!! I knew it was worth going. 😳

[Doggymama]

denise So pleased to hear Stephen has been happier today, it really can make a huge difference to how we are feeling when our loved ones are feeling a bit better in themselves. So glad to hear today is a better day for you and Stephen both xxx

[Tabbycat]

denise glad you were able to have a conversation with someone who understands MND and actually listened to you.