Quick tips

[Susan_AU_08]

I am new here too but want to share some tips that others might find useful.

I'll start with the doorbell..

Mum could no longer call out to me so I bought a wireless doorbell that just plugs into a normal power point and plugged it in to a central area of my home. I stuck the button next to mums bed when she was sleeping, and then when she was up I stuck it somewhere she could reach it, the result was I could sleep in my own bed but be woken if necessary by the bell, or I could do household chores and know if she needed me I would hear her.

 

[baba]

baba caregiver in canada

Thanks great idea!

 

[anne]

My mom was no longer able to communicate verbally and what we had done was I went out to an Office Supply store and purchased several silver round bells that you tap. We had them through out the house. One by her recliner/telephone, another by the bed and if for whatever reason she needed us she would tap the bell. If by chance she would be home alone and would run into trouble she would call us and tap the bell then we would know that we would have to get help fast. Thankfully we never needed to do that.

 

[Susan_AU_08]

Does anyone else have any tips?

Things to do
I'll talk about how I spent time with mum, we read books together, like the blue day book, we watched ALOT of movies, manicures and pedicures (foot spas are great), foot massages, shoulder massages, we were fortunate to have a family friend who was a hairdresser who came to the house to cut mums hair, leave in conditioner is good, head massaging is good, before her hands got too bad we'd do word find puzzles, everyone on this site is lucky to have the internet (and this forum), we played bingo, her favourite game and if you're in hospital, it's a good game to keep other people entertained also...

Things not to do
Never spray anything that smells near the bipap, it goes straight through the filter and it's not good. I once cleaned the table mums bipap was on with Windex while she was wearing it and it was horrible, I didn't realise.

Underpants
The best underpants for mum were the Tena brand, because they're elastic, you just pull them up then you can tear them apart at the sides for quick removal, she loved them and found them the most comfortable. The other kind with the sticky tabs were way too difficult.

Take your bipap
Take your bipap with you wherever you go remind your paramedics this is not oxygen it's different. Always have a fully charged backup battery pack (unfortunately these are heavy). Mum was once rushed to hospital the paramedics said they didn't need her machine because they 'had oxygen in the ambulance' and they were concerned about space (in the ambulance), well halfway to hospital they had to turn back to pick it up, meanwhile mum was struggling to breathe.

Notes
Have a note handy that explains MND. My note for mum started with her name, explained she has MND and that she can't speak but she can understand what everyone is saying. (It is horrible with slurred speech having someone ask me in front of my mother if she can understand, and once, if she could speak English) Attached was a list of her medications, dosage and times they need to be taken and while hospitals have their own, I always made sure we took hers with us because sometimes they run out or they improvise which is very frustrating. This note proved invaluable and ensured mum was treated properly.

Lamp tables for bipaps
Lamp tables are good height in the living room for bipaps, you put the water chamber on the floor and the machine on the table, the length of the hose is just right. In hospital one time, someone had a two tier trolley though I never got one of those, I wish I did, it was on wheels, very very handy. They used the second shelf for the chamber and the top shelf for the machine.

The ironing board
Is great to use as a table for meals or whatever, because it is height adjustable and it has the side where there are no legs that can go right up to the body when your sitting in a chair, it's also quite sturdy for light things (not stylish! but definitely useful) and while there are better tables out there, like the ones in hospitals, we all have ironing boards at home.

 

[Al]

Some very good ideas Susan especially the Bipap. Thanks.
AL.

 

[Susan_AU_08]

My pleasure.

I have another one for cleaning the bipap

I cleaned the hose of the bipap by holding one end, filling it with warm water and dishwashing detergent, swishing around, tilting from side to side and then rinsing thoroughly and hanging up vertically to dry and as for the chamber, the suction is quite strong but once you get the hang of getting the base off, it's easy to clean. It took me a while at first, I was almost convinced it was glued, but there's a knack to it, you kind of have to pry it off. The gel masks are great because if they lose their shape, you can soak them and they regain their shape. If you can, get two masks and two hoses so you have time to let the washed ones dry.

 

[witzz]

Just another tip depending on what the PALS can and cannot do...my mom hasn't been able to use her hands for some time but she was able to call out (though her voice is weaker and weaker). We got a baby monitor for her room with receiver in the other room so that the caregivers can hear her when she's sleeping. It works very well.