Rick thought he would get in on some of the "Canada Day" action even though he spent it in bed! Cute cap "EH!!
Yesterday, we were hit with a big storm and lots of rain and hail. The hail was the size of a loonie in places. Rick says he loves watching the storms and the weather. Must be the Sperling roots at work here! We love using the intellicast weather radar system on internet to tract these storm cells.
We had our very first homecare 24/7 overnight respite here. Jake and Val took care of all the feedings and meds that needed to be administered so this could happen. Rick's mom and dad have been so faithful to have been doing this throughout this past year to give me a break. If either one of them would get sick...I would not have their back up so Rick and I have been working on putting this in place.
We had our very first homecare 24/7 overnight respite here. Jake and Val took care of all the feedings and meds that needed to be administered so this could happen. Rick's mom and dad have been so faithful to have been doing this throughout this past year to give me a break. If either one of them would get sick...I would not have their back up so Rick and I have been working on putting this in place.
For any of you who have walked the ALS journey you will understand what a danger care giver burnout can be. It sneaks up on you so you have to stay ahead of it if at all possible.
We are so fortunate to have the homecare team that we do! Just wished they were allowed to do some of the basic care that ALS unfortunately prohibits them from doing under normal care.
We just can't leave Rick alone at any time at all without someone here who I have trained. Homecare can't do regular feedings, tube feedings, administering meds due to the nature of the ALS disease. There has to be one of us available to do those things.
I found out it takes quite a little bit of organization and scheduling for me to have a day off with Homecare here. Because Rick's folks and Jake and Val have been here learning step by step along the way with me they can come in and just get updated. But for anyone else they have to be trained first as you can't just jump in and take care of someone with ALS if you don't know the way of the disease.
We are in the process of having our respirologist put together a protocol for the ambulances in the area to have on file. So if our address comes up they already have all the info on file. Palliative Care suggested that we do this to eliminate any confusion. For example...if you don't know ALS and he is having trouble breathing you would assume you would just give him oxygen...well that could actually cause him more problems!
I have made a list of what should be done in case of an emergency now posted on our fridge along with the ERIC kit and Advanced Care directives and phone numbers. This should eliminate some last minute flurry should we need an ambulance. Rick has to have the bipap with him at all times....even in an ambulance. His bipap has it's own personal settings so where he goes it goes! This is all gone beyond being simple!
