My uncle was diagnosed with Ataxia 5 years ago. His condition is very very advanced now. He is unable to move at all. He has used a TOBY monitor with his computer to signal Yes or No with his eye movements. He can make very slight yes/no movements with his head. That’s all.
However, he’s fully cognizant in his mind. He is a master chess player & still plays chess with his brothers & WINS!!
He has been in a VA nursing home. He was recently transferred to a hospital for bedsores. Now that condition is under control & the hospital wants to return him to the home.
The hospital has given him a swallow test & determined that he should have a PEG feeding tube. My uncle has refused the tube. My father, his POA, has told the medical people that the decision belongs to my uncle alone.
Anyway, in my state, a cognizant patient can always refuse the tube. However, neither the hospital nor the home want to spoon feed him because he can aspirate.
We’re trying to find resources (NOT HOSPICE) who can provide the hand feeding at the nursing home. Is there a place where I can find caregivers who understand the nuances & complexity of this disorder?
My dad says he ALWAYS has to tell the doctors and CNAs to talk to the patient because they assume he’s comatose. We’d like to find appropriate help.
Much thanks again. All the best for a healthy 2017.
I have had a feeding tube for a few years and finally had it removed about 5 years ago. Once I got used to it there was no problems, except for when it is in for too long it rots off. After you have a button installed it is easy to replace. I have had a couple fall out but the only problem with that was the hole can start closing pretty quick. I am having some problems eating now where I have to cough it back up and chew some more and then drink to help the food go down. Jerry
Hi Tracey😊
I don’t have experience of this, to find out, I had to google🤔 So, please bear with me.
One of the symptoms associated with ataxia, is Dysphagia. Which as you probably know, refers to difficulty in swallowing. This is particularly worrying if a patient is also immobile and bed bound.
You might find it helpful to log onto www.asha.org > … > Dysphagia
The American Speech-Language-Hearing Association.
This particular site outlines scenarios similar to your Uncles. Many ataxians are referred to Speech Therapists for advice on swallowing.
The bottom line in these cases seems to be whether or not the patient has decision making capacity (DMC), and you confirm he has. But, with a condition such as ataxia, when dysphagia is a big concern…? I’m fully mobile and have experienced involuntary choking even with saliva, it’s very scary.
This may be a major concern at the Nursing Home, going against medical advice may invalidate their insurance🤔
It’s a difficult, heart rending situation. Would it be possible for a trial period? xB
*** I first googled ‘refusing a feeding tube’. This took me to the scenario I referred to.
We went through this with my dad but he had a stroke. They wanted to put a feeding tube in because he wasn’t eating well and the food he did eat they were afraid he would aspirate but my father, who wasn’t able to speak well but was of sound mind, didn’t want it. The doctor wanted to put it in anyway but because my dad didn’t want it and would pull it out the doctor wanted to tie his good hand down. HOW HORRIBLE!!! We finally got him moved to Hospice and it was like 180 degree turn. They let my dad and his family do what we wanted. My dad lived about another 2 weeks but without the feeding tube he had his 2 favorite things (a beer and ribs). I can’t say enough about the Hospice people. They are saints.
I don’t know what it is but if you are disabled other people think you are deaf and dumb and not able to communicate. It is EVERYWHERE.
I used to work in a convalescent hospital doing maintenance and repairs in the eighties or nineties and most of the patients who got feeding tubes were given them because medicare paid extra and not always because they were needed. It saves the hospital big money to not have to sit down with every patient and spoon feed them. The up side is with a feeding tube at least you get fed , they don’t just come in and take the food you could not feed yourself.
xB