Dear Carol: My dad has had Parkinson's disease for over 10 years. He has trouble speaking clearly, he chokes on food, and he'll clamp his mouth shut when we try to give him his medicine. We've tried to trick him by putting a pill in his food, but he will spit it out. Dad's doctor says that this is where he is in his disease and we need to accept that. He says that, eventually, people tend to get tired of the struggle. Dad's only 72. Should we have him put on a feeding tube? — G F
Dear GF: I'm so sorry for both your dad and your family. You've been forced to watch Parkinson's disease gradually over-take this person that you love. I hope that you are attending a support group for families who have similar issues.It sounds as if you are working with your dad's doctor, but I have the feeling that you're unsatisfied with his conclusions, so I'd suggest that you seek a second opinion.
Swallowing problems (dysphagia) often come with later stage Parkinson's and fear of choking can lead to the problems that you describe. Pureed food, thickeners for liquids, and other steps, can be suggested by a qualified therapist. You may want to try the website essentialpuree.com for education and recipes, as well. The company is part of the Swallow Support Groups at the University of Washington. Additionally, a pharmacist may be able to suggest alternative methods for delivering medications.
Another factor to consider is Lewy body dementia (LBD), one type of dementia that can accompany Parkinson's. I'd think that the doctor would have caught this development and/or you would have seen other signs, but a second opinion could help, here, too. LBD can cause paranoia to the point that people may think that they are being poisoned, thus they won't eat.
It's important to understand that there's a tremendous difference between someone who can be helped with the right food textures and medications so that he can still enjoy life and someone who is in a very late stage of a disease and is ready to let go. A second opinion may help you feel more comfortable in determining where your dad is in this spectrum.
Feeding tubes can be considered an extraordinary step in maintaining someone's physical life by artificial methods. I hope that, early on, your dad was clear in his wishes about how far he wanted people to go to keep him alive. This knowledge could help guide you as you research the pros and cons of using a feeding tube at his current stage.
Talk through all aspects of your dad's care with at least two doctors and discuss his end-of-life wishes if he wrote them down, or even talked about them with you. Then, you would be more prepared to advocate and move forward with that is best for him. Age isn't as big of a factor for most people as their quality of life.
Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com. She can be reached at carolbursack@msn.com.
http://www.duluthnewstribune.com/news/4335100-advanced-disease-feeding-could-be-considered-extreme-measure
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