Waiting for them to catch up to us.

[Chase_Corin]

I havn't been online in a while to check in because my dad's condition is progressing rather rapidly.

We went through a huge mess when dad's air chamber bed went on the fritz, it took a week of tech's coming out to gerry-rig it to work and it failing in the middle of the night for the Medical aid people to say that he needed a new matress and another week for a new matress to come.
So, we put mom's matress on dad's bed frame which wasn't ideal but worked. Unfortunately that put mom in another room to sleep. Neither of them slept well for two weeks.

We have been waiting months for dad's feeding tube to be scedualed. We are also waiting for a device to help with dad's speach which has been promised for over 6 months.

Dad is still able to walk to a certain extent, he has almost no ability to get himself in and out of a chair so mom and I are on call. He has little to no muscle mass in his arms at all.

His speach has gotten really bad in the past week I have noticed it the most. Mom has a really hard time understanding him so I am a translator for them but I am having more and more trouble and he gets so frustrated.

So we are on hold waiting for Doctors to call and therapy machines to emerge from the tangled mess of the health care system.

It just feels like things are happening too fast and I can't even keep up let alone the services in place that are suposed to help.

There is just so much going on right now, overwhelmed is not the word for it. Does anyone know of a way to speed up the process, to get dad the aid that he needs?

[Al]

Have you tried calling your local MPP? Ours helped tremendously. Are you waiting on stuff from CCAC or the AL S Society?

AL.

[asantiago]

So sorry to hear your struggles. With my moms very rapid progression I had the many of the same situations and nobody seemed to understand the urgency of our situation. To get her PEG scheduled I had to make numerous phone calls and be very demanding, never rude but certainly stern. Same with the communication device which unfortunately never did arrive until the day she died. I wish I had been more diligent about the communication device but as you stated its all so overwhelming always 1000 things to do at once.

The PEG should be something you can move up based on demonstrated need. Tell them you are facing an emergency situation where you feel he could starve to death if something is not done immediately. That worked for me and it was the truth. Of course I have no idea how the CA medical system works. But being persistent and diligent calling and calling and calling is what I had to do.

In the mean time print him out one of those speak books that have been brought up on here a lot. I'm sure someone here will help you with that.

Good Luck to you! Your father is lucky to have your support.

[HelenL]

here's a copy of the speech book

[Tom's Support]

Can he type at all? I was disgusted at the price of the com. devices they have to offer at the hospital and was appalled when I heard you need to lease for a whole year! What if you don't need it for a whole year? What a waste of tired resources.
Then I googled and found that if you have a laptop you can create your own com device by downloading FREE software that will turn your computer into a talkie! YEP--FREE!
That is the route we will be taking, and the equipment will already be familiar.