“Nursing ALS” Chapter 117

There comes a point when every PALS will need help. There are several choices you can make. When I first started showing symptoms, my family was here to pick me up when I fell, help brush my teeth, and wipe my ass. At that point, my man card (chapter 13) was officially torn up and thrown away. Eventually we realized that taking my care was too much for my family alone, and we needed help. Twenty Four hours a day was wearing my family out.

As a Veteran, I am blessed to have options. I can have nursing support come to my home, or I could move into a Veteran Nursing Facility. I know for a fact, though, that I would not still be alive if I weren't at home with my family. Love, the quality of my care, and the resulting depression and loneliness would have been a major factor if I had gone to a facility. Being home changes all of that, even if we need help along the way.

In the beginning we only had Certified Nurse Assistants (CNA), and they were great. Once we realized that my care requirements were above the CNA's level and they did not have the required skills, we upgraded to working with Licensed Practicing Nurses (LPN). Even though we are supported financially by the VA, it was still our responsibility to interview, hire, and - yes - sometimes fire the help sent to us by the contracted agency.

We were initially authorized 56 hours to use for a CNA. The agency sent us an applicant over to be interviewed, and bang! The agency knocked it out of the park. Our first CNA was amazing. She was strong, caring, and a great person. If I'd had a choice, I never would’ve let her go. When we transitioned to needing an LPN, she was unfortunately no longer qualified. We also had two gentlemen CNAs and a young female. The two men were good and strong enough to move me, but both left after a few months. Up to that point in time, we didn’t decline anyone. When the young girl (23 years old) came in as a substitute CNA, she just kept talking and was generally annoying. Laura called the agency and requested another CNA.

Once we transferred over to LPNs, the care (with the exception of our first CNA) was significantly better. Skilled nurses are the way to go. They are able to give meds, charge my trachea, and work with my feeding tube right in my home. Bringing them with us to doctor's visits gives us someone who understands what the doctor says. After all, hearing and actually understanding are sometimes not the same things. We have been blessed with two beautiful LPNs. Both were with us for over a year, and both are like family. They're also professional, kind, and caring. Unfortunately, though, Emilia left to give birth to her beautiful daughter last year, and Donna, who has become like a sister, is leaving in March. I have written about both in previous posts. The other day we interviewed a new LPN to take over in March. I don’t think he is older than 30, but he seems knowledgeable and a good fit. “We shall see.”

So how do I know if the CNA/LPN is a good fit and which one do I need? I never interviewed any doctors handling my care nor a nurse when in a hospital, so why would I do so with my nursing care?

Laura has a phrase she likes to use when discussing something new. “I don’t know what I don’t know!” So sometimes when making a decision you make a wrong choice and then adjust fire. Here’s what we found to work best for us:

During the interview we now ask better questions. What experience do they have with ALS, feeding tubes, trachs and suction, and have they worked with quadriplegics? Are they comfortable with cats and dogs, and also going to appointments? How far away do they live, and can they fit the hours we need? The most important question is, of course, are they a Cowboys fan? I had to kick one out simply for saying, “No, I like the Commanders.”

What we found was that not all nurses are created equal and the agency doesn’t screen very well. We had two not return after the first day because of the drive, another left because of cat allergies, and one other was too weak to lift me. All of these concerns are in our file with the agency. Why they send them you ask? My guess, is a nursing shortage. The agency cannot find qualified nurses to fill their requirements, so when a CNA/LPN applies for a job they just send them out to meet patients. 

Now that we are two years into this, “we know what we know.” Because I was already trached and had a feeding tube, there is no way I should have started with a CNA at the beginning. I was already needing someone with skills above their level.

At this point we are a lot more comfortable with new people in our home, and we accept the help. Don’t expect them to know how to take care of you/your PALS more than you. Don’t expect them to actually know what they say they know, especially about ALS. We had to teach everyone about what I need or want. Watch and correct how they do trach suction and other things and that’s ok. I need someone to fight for me and the good thing is once they learn, family members will get the time they need to help themselves.

Take your time to do your interview and understand who they are. Have patience and work through issues and needs. I pray you find the best help for you like I have finding mine.

Love and Blessings 

I love to read your comments and hear your stories, so please rate my posts and leave a comment below. When leaving comments please sign in or leave your name so I know who you are.