I am looking for information as to peoples experiences with an ALS patient in a nursing home. I would like to hear comments good and bad.Thanks
I am looking for information as to peoples experiences with an ALS patient in a nursing home. I would like to hear comments good and bad.Thanks
Hi there. My mother is in a Skilled Nursing Facility with ALS. After being diagnosed in April of this year, we were told because of the rapidness of the disease in her case that it would be impossible to care for her in our home.
I researched the many facilities in our area and found one that really is fantastic. My only concern was how would they know how to treat her disease. Well, I contacted the Baylor College of Medicine here in Houston Texas. We met with the Director of Nuerology, and at the same time we met the representative with the ALS Chapter of Houston. She suggested having an in-service day with the Nursing Facility. I thought oh boy, that would be great. Long story short, the day never happened because of scheduling and then the ball got dropped.
So, I took it upon myself to educate them on my own. They listened and continue to still listen. And when I don't know the answer to why or how, then I turn to my physician assistant at Baylor. I have come to learn, nobody can do any better job than me in teaching them about MY MOM. No she is to the point of Hospice and I just recently signed the paperwork. It doesn't mean she has a timeline for her life, but it means extra help. So, therefore I once again contacted the ALS Chapter here in Houston and got referrals for Hospice agencies that were experienced with ALS patients. This way I know that someone other than myself is educated with this tormenting disease and between them and myself we can make her comfortable so she can rest easier. She understands what is going on and it sure makes it easier on me when she has her bad breathing episodes and other problems that arise with ALS.
Finally, there is nothing wrong with the nursing homes treating ALS patients, you just need to be on top of the program so you can do the educating. As a final note, contact your local ALS Chapter and let them send you out the complimentary DVD on the disease. It is extremely helpful.
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