My mom is 71 years old and was diagnosed with Cerebral Ataxia in her 50's. She entered at nursing home at 59 years old when living at him became difficult. When she was diagnosed at the Mayo Clinic we were told about the progression of symptoms and last year the signs of difficulty swallowing was evident.
At the nursing home they have thickened her fluids but now her ability to control chewing and swallowing has become progressively worse. They will now be softening her food. The therapist working with my mom contacted me regarding this next step. When I asked what the future care plan would be I was a little surprised by the answer.
I was told they would do one of two things:
1. It is possible she would get a feeding tube but the therapist said that in our province not everyone can get one and there are only 3 care homes in the province that are equipped to have people with feeding tubes.
2. She eats as much as she can but over time loses nutrition, will lose weight and die.
I was shocked!!!! I am going to an annual care meeting this Wednesday to advocate for my mother's future care. At 71 her cognition has been affected by the Ataxia but she is a positive woman who goes to all of the programs at her care home and has not given up on life. I would like to hear from others who know anything about the progression of this symptom.
Thank you in advance!
That is indeed shocking! Can't they apply to be trained for this eventuality?
I was not aware the symptoms could get that bad. Bless her for not giving up on life. I'd fight for her to have appropriate care where she is, or move her out to another facility.
Good luck with your advocacy.
If it was my mom I would encourage the feeding tube as this also prevents aspiration pneumonia. If she wears dentures or a partial and they do not fit well that can also contribute to the problem. My mother, after many years of aspirating food into her lungs eventually died of aspiration pneumonia at 73 because she didn't like the sound of a feeding tube. I've read that is the number one cause of death in ataxias. I wish now I had really made sure she knew how a feeding tube worked and encouraged her to try it because getting adequate nutrition and keeping food out of her lungs may have really improved the quality of her life.
I also have the same hereditary SCA and at 56 notice some swallowing issues beginning and I know I will look into a feeding tube down the road if I am still enjoying life.
Good luck to both you and your mom! I hope she keeps her positive attitude. I hope your meeting goes well!
I had a feeding tube for a few years after cancer operation on the neck. I slowly started eating by licking peanut butter off of a spoon. Having the feeding tube is not a big problem usually, but getting the first one removed is going to hurt a little. I was having trouble eating recently and went to see if I needed to have one put back in but the doctor tried stretching my throat once more and it helped so I am still free of it. I do have problems with my throat closing and stops my breathing for what seems like 5 minutes, it is terrifying for a couple of minutes until you get a little oxygen. The only problem with a feeding tube I had was the internal plastic balloon rots off and it falls out and gets you in a panic usually because of drainage and the hole starts to close pretty soon after so you have to get the part back in or find something that fits in there. Some times in nursing homes and such the feeding tube is inserted through the nose to feed and nursing homes in the states use the need for a tube to make more profit from medicare so you should sometimes get a second opinion. I am 80 yrs old and would get one put back if I had to.
I am wondering how your mom feels? I know that can be the last stage without a feeding tube, did you or your mother talk about this and her wishes?
I would like to know how common it is to need a feeding tube and if it usually allows you to enjoy life more or just allows on to stay alive longer. I recently told PCP I was beginning to have some choking issues (not bad yet). She told hubby and I we should make a decision about a feeding tube while it could be done rationally and not emotionally. She said 10 years or so ago that option was not available. I never really thought Ataxia put a person in the positiion of needing a feeding tube even though choking is a problem and thickeners are needed for liquids. I am getting slowly worse and worse as far as speech, walking, and fine motor skills go, but just turned 72 and have only had this about 4 years.
If you are having problems with some foods and would feel safer with a tube get one put in when you think you need it because you can still eat thru your mouth some.
Is your mother still of sound mind and able to communicate? Ask her what she wants.
I know this is hard, my father had a stroke and did not gain any movement back on his left side and would never be able to care for himself again. He was still of sound mind and the doctor wanted to put a feeding tube in. My dad said no. We moved him to hospice and we let him have his ribs and beer and he passed away a few days later. It was hard but it would have been harder to watch him be restrained to keep the feeding tube in.
What is her quality of life going to be like?
I do not require anything special eventhough I am 80. However, my brother in law (82)has been using one for some time. His speech is EXTREMLY gnarly! Still, he is very active in several corporations, travels extensively, and enjoys life (except he cannot eat). Life with a feeding tube depends upon the individual. Let your mother know what can be expected and get her feelings. Now me< I have had a very good life. Still, I don't want to compromise myself. I would just rather go quitely into the night: unbroken and unafraid! -Silky