Palliative Care Nurse

[LindaB]

Had a visit from my nurse today. She is so lovely...something special about people who choose to work in palliative care IMO.
Anyway I've been feeling nauseous of late (not sure if it's the Riluzole). So we've agree I'll try Metodopramide (not sure of spelling) 10mg half an hour before meals. Changed to Domperidone.
I'm also going to try a selection of supplement drinks....see which I prefer.
She will arrange for GP to arrange my covid booster at home.
I've had some right sided pain in rib area..will continue with panadol but call her if worsens.
She checked my blood oxygen levels...ok

She stayed a while and we talked through a few things.
Peg - we agreed to try all the above before making a decision. She did say she could ask the doctor from the hospice to visit and he would be happy to answer any questions about the process etc. Which I thought quite amazing.
Anticipatory meds: not needed to have on hand just yet.

It's a comfort to me to have someone I'm confident in to talk to if I'm worried. She gives me full control in decision making and what's right for me 💙

[Mary C]

Hi LindaB
glad the nurse gave you confidence to ask the questions about your care needs.
How are you getting on with NIV
Best wishes
Mary

[Ellie]

Had a visit from my nurse today. She is so lovely...something special about people who choose to work in palliative care IMO.

I second that Linda.

Every single person I met in the hospice, from the kitchen staff up to the consultants, and the community palliative care specialist nurses, are truly special people.

Hope your anti-sickness meds greatly improve your eating experience - that nausea must be soul destroying...

Love Ellie.

[LindaB]

Hi LindaB
glad the nurse gave you confidence to ask the questions about your care needs.
How are you getting on with NIV
Best wishes
Mary

Yes Mary I'm getting on ok with NIV....using all night and sleeping well. So 9 ish hours. Only thing I've noticed is that it makes me 'windy' if you get my meaning...thank goodness I sleep alone😂😂
Have a respiratory appointment this month and I'm hoping there may be some improvement in readings.

[Deb]

So glad you found the experience helpful and supportive LindaB It's good to know the help is there and yes they are very special people... but then so are you.

Love Debbie x😘🤗

[Ellie]

I've noticed is that it makes me 'windy' ...
Have a respiratory appointment this month

If the respiratory team don't know of that side effect, tell them, your settings may need a tweak. xx

[Heather R]

LindaB sorry to hear you're not feeling well. Linda, but good to hear you're in good hands x

[LindaB]

LindaB sorry to hear you're not feeling well. Linda, but good to hear you're in good hands x

Thanks Heather...just queasy at times which isn't great when you're trying to keep a high calorie intake...but hopefully will get this sorted out....😘

[LindaB]

Had a visit today by a social worker (hospice). A very new experience for me (I bet he was a little nervous knowing my profession). Anyway he was very good...listened....gave just the right amount of advice....very approachable. Created a safe talking space which is good on a first meeting. I give him 10/10
Nice person.😇
So yes I now have my very own social worker 👍😇

[Mary C]

LindaB
Yes it’s funny you now have your own social worker.Did you learn anything you didn’t already know?My sleeping has become disturbed due to dry mouth..always waking up lately for sips of water.( tried, saliva gels, sprays, pastilles).I do have a hour nap in the day when I can as get tired mid afternoon.
Best wishes
Mary

[Heather R]

LindaB you know how to assess a social worker! Great that you got a first class one! Xx

[LindaB]

LindaB
Yes it’s funny you now have your own social worker.Did you learn anything you didn’t already know?My sleeping has become disturbed due to dry mouth..always waking up lately for sips of water.( tried, saliva gels, sprays, pastilles).I do have a hour nap in the day when I can as get tired mid afternoon.
Best wishes
Mary

Well he did remind me of important things to consider. Yes we know about them but sometimes good to be reminded. Things like LPOA which I've started but not finished....so I need to do that. I know that we're not likely to lose mental capacity with MND but maybe difficulty expressing wishes. Also regarding a will....maybe complete a temporary one whilst waiting for a more formal one (using a solicitor) I thought that a good idea.
Sorry you're getting disturbed sleep....is it because you're mouth opens as you sleep do you think? That's what happened to me.
Hope you can get that sorted. 🤗💋

[LindaB]

LindaB you know how to assess a social worker! Great that you got a first class one! Xx

Yes if it was an interview he got the job. 👍💋

[Doug Carpenter]

Hi Mary

Does your NIV have a humidifier - basically a reservoir of water over which the air passes?

I find that plus lip salve works for many hours overnight.

Doug

[Heather R]

I got LPOA a few years ago, not thinking I would ever need it, but because it seemed like a good idea to get done. From what I read, it would be easier if needed in the future to give my children the power now , (trusting them absolutely!). Now it’s proved very useful with all the great complexities of my adaptations and other things, for my son to take control of this without anyone being able to question, otherwise I think I would have found it a total nightmare x