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kitkat

Member
Joined
Nov 9, 2015
Messages
21
Reason
Lost a loved one
Diagnosis
11/2015
Country
US
State
MN
City
Fairmont
Steve was diagnosed January 2016. I still work fulltime. We have managed to make things work up until now. I would help him dress and eat before I left for work. If I was not going to be able to go home for lunch, I would leave a cut up sandwich & snacks between paper plates with a small zip-lock of ice on top to keep things cold. He cannot use his hands or arms, but would use his teeth to move the bag of ice & the top plate. Then eat like he was in a pie eating contest. This is the way he wanted to do things. But now, I want to get a helper for his personal needs and to feed him while I am at work & I'm so afraid he will fall... Where do we start? Do I call a home health care agency, go thru our local ALS association, hospice??? I'm a wreck over trying to make decisions....
 
wow that sounds just like what I went thru at the beginning. What I did was buy an inexpensive scooter for him to ride indoors to remove the fall issue. he could swing his arms up at the shoulder enough to rest his hands on the handlebars and used his shoulders to turn his arms. it worked for about 9 months and gave him freedom and me peace of mind for falls since he was not emotionally ready for the wheelchair. food and choking is a real issue--my husband also ate like yours but he choked all the time too. so I made smoothies and left them out in a Styrofoam cooler with the straw poking thru. worked for a while any way. I hired aides from caredotcom and had good luck. best price and also I also found great ladies. ususally you want a minimum 4 hour window so you can get someone reliable. maybe have them come right a mid day so he is only alone for a couple hours in the morning and then in the afternoon. my husband usually would just sit on the computer or nap during that time. as he became more disabled I extended the hours of care until it was full time if I wasn't there.

sounds like you are creative in your approach to this disease storm and that is good! remember it is also ok to get help from several places, but that does require more juggling which is stressful too.

good luck
 
Hi Kitkat,

People here have used a number of resources, including personal networks and postings aimed at students in or graduated from colleges and CNA/NAC programs (trade schools). The problem with agencies, though some here have used them and can speak to that, is that your pool is limited to their staff and the process to their supervision, plus they take a markup. We had success with the student approach. Whoever you get from where, be clear on what you want them to do; it's more important to get someone conscientious and willing to learn than for whom it's a career.

Best,
Laurie
 
I was in a similar position back in January and I felt very overwhelmed and paralyzed by taking the step of hiring an aide. It helped me to write here on the forum so I think you have already taken the first step.

Your local ALS organization might be able to provide you with a list of aides who have had experience dealing with ALS patients - it doesn't hurt to ask.

Depending on the stage of your PALS progression, hospice could be an option. It appears that nationwide, hospice agencies are inconsistent in the amount of home aide help they will provide, but it wouldn't hurt to inquire either.

While both hospice and nursing agencies vary in the quality of care they provide, I personally have found it beneficial to have a professional organization manage the home care process, as they have checklists of things that one as an individual might not have thought of. It does add a layer of bureaucracy though and it does not absolve one of the responsibility of being vigilant in looking after our PALS wellbeing.

Good luck and please keep us updated!
 
I found a woman through a mutual friend who comes once a week. She does anything I need and only charges $12 an hour. It seems like you should be able to find someone to help out.

A man in my church had a severe stroke and was in a wheelchair. He hired a male college student to come in during the days and help him shower, eat, and do things like get the mail or other in-house chores. He helped him for two years and, in the end, was there all day doing various things for the man. My friend had to have all his food thickened and the student was taught what and how to feed him.
 
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