Complete loss of swallow/dysphagia
My dad fell last summer, broke his hip, and afterwards, he lost his ability to swallow. Prior to the fall, he was eating normally.
As a family, we made the decision to have a G-tube inserted.
He is in his early 80s and has had Parkinson's for over a decade. He has some Parkinson's related dementia.
Sadly, even after months of speech therapy, he didn't regain his swallow. He tried purees but couldn't eat enough to sustain his weight.
He still recognizes his family, but the dementia is getting worse.
He does some amount of exercise daily with assistance from the care team at the nursing home. He cannot walk independently anymore (after the fall) and uses a wheelchair with help.
He did not develop aspiration pneumonia even when he was having purees. His heart and lungs are in good shape.
How long could he live this way? Any experiences? We realize that the dementia will get worse.
I am so sorry to hear what your father and your family are living through. My heart goes out to you all. I can imagine how heartbreaking this is for you all. Hopefully any other community members who have personal experience will weigh in. In the meantime, please know we are here to provide support however we can and you all are in our thoughts and hearts. Sending so many comforting hugs. Kindly, Jessica, PD Team. Member Thank you so much Jessica. It's truly heartbreaking and unexpected. If anyone has any experience with this, I'd really like to know what you've experienced. Maybe it would help us in some way.
Jessica, I am truly sorry to hear about your dad. You say that he couldn't regain adequate swallowing function to sustain his weight, so I assume he has a feeding tube. Is is swallowing for pureed consistency adequate for some pleasure meals? If he is requesting food, and you see that it might add to his perceived quality of life in some way, then you might approach the speech pathologist with a request for pleasure feeds. They should be able to instruct you in some measures that minimize aspiration risk. Aspiration can occur on one's own saliva, and even with a feeding tube in place, and so oral care regardless of eating status is important. It is unlikely that you dad would each much as once a feeding tube is in place, the normal hunger/satiation is altered. If you know your dad's wishes/preferences, prior to this last incident, it may help with decision making going forward, and make it easier to honor his wishes. No one can predict the future, but with you love and support, you can make this final stage for him manageable. Participation in a support group for you may also help by speaking to others who have also had similar situations.
Thank you so much for your response. You are correct, he has been using a feeding tube since the fall last summer. He sometimes asks for food, and we give him what he can tolerate before he starts coughing. Though his AMD says no parenteral nutrition, his dementia does not allow for productive conversations. And when he's mentioned his wishes, they have not been consistent. Having medical power of attorney, my mother wants him to continue to use the tube. Thank you for your suggestion of a support group. I know my mom has participated in one before for caregivers. Thank you for responding. As a family, we've accepted the risk of aspiration pneumonia and he takes what he can orally. It was more food previously, and now it's just a few bites here and there. He can't eat much without coughing. I think without using the swallowing muscles, they've weakened further. He's had 4-6 swallow tests since the fall, and he's failed each one. What remains shocking to me is that before the hip fracture, he was able to manage most ADLs on his own (eating, bathing, shaving, dressing, toileting, etc.). Afterwards, he's become completely dependent and not able to eat by mouth.
In over 30 years of working with Parkinson's patients, a fall with hospitalization always seems to be the event which sends someone down the slippery slope. One final comment regarding pleasure feeds/oral intake and aspiration. Aspiration is often the elephant in the room that instills fear in everyone, but it is important to remember that we all aspirate from time to time, and for aspiration pneumonia to occur several elements have to be in place such as immobility in patients who are bedbound, weak or absent cough, otherwise frail. Your dad's coughing indicates that his larynx is sensate and he is responding to something in on or near the vocal folds, and in that respect a cough is good, but his immobility may weaken that cough over time. Without a history of pneumonia or other pulmonary issues, good pulmonary and oral hygiene can be the most important strategies for eliminating or reducing any risk from aspiration events. If you father is able to follow instructions, consider using a PEP device. The Acapella is one I suggest to patients. The patients blows into the device and it creates vibration in the chest wall that helps to mobilize secretions. He may cough after using, but that is good as it is an indication that he is moving secretions in his lungs. I recommend patients use the device after meals or any oral intake if only on small amounts of food or drink. My dad also had Parkinsonism, and after several falls, he too landed in the hospital and rehab. While that time was difficult for him, in someway it is harder on families. We so desperately want to do something, and sometimes all we can do is be present and support them on their journey.
thank you again. I will look into the Acapella PEP device. I'm sorry your dad had Parkinsonism. For us, it's really becoming a long goodbye, especially with the PD dementia.
