What happens next with Papa & Parkinson’s?

Yes, and unfortunately it does get worse. My father-in-law had PD which I heard was caused by a stroke he had, or at least exacerbated by the stroke. His voice got kind of high pitched and he tried so hard to form his thoughts into words. Hubby was the same way after his stroke. It’s called Aphasia.

The best thing you can do for Papa is be very patient. Listen to him and don’t interrupt unless you see he’s getting stressed out and frustrated. Maybe ask his doctor about speech therapy? The therapists can give him suggestions about how to get his words out. They suggested to me after aHubby’s stroke that we play card games. They also said to talk with him a lot and get him to talk back as much as possible. Keep his brain active. It helps delay the progression of Parkinson’s Disease.

My heart goes out to you. My dad is 91 and was diagnosed with Parkinson’s after a TIA 4-5 years ago. Unfortunately, it does get much worse. He began falling and so many falls until I lost count of them. He became wheelchair bound and still had falls transferring. We finally had to have 24/7 skilled nursing. About 6 weeks ago, he started having hallucinations, talking out of his head. Now he can no longer stand up or even walk with a therapist. A week ago he had another bad fall and was sent to the ER. CT scan showed no damage. He has been in the bed ever since. He sometimes talks out of his head, sleeps most of the time. Also over time he has become so soft spoken until you have to put your ear to his mouth to hear him and still sometimes can’t understand him. The swallowing issue is getting worse. Nurses are now suggesting hospice. I hate to give such a negative answer but I have seen the rapid decline of my dad. Parkinson’s is a cruel disease and it is progressive.

Sure, Becky. No one can really predict what will happen with Papa. There are many support groups for Parkinson’s. Check them out in your area—teaching hospitals are good places to start—and maybe join one. My husband was on a medication called Carbidopa Levidopa for a while when it was believed he had PD. Is Papa on that? There are lots of meds he can be on to help him. Watch him for any signs of difficulty swallowing. Stay in close contact with his doctors. They are the ones who can help you the best. Hugs!

Dad suffered from violent hallucinations beginning in early November last year. He was placed in hospice in early December and passed just after Xmas. I believe the only relief he had from the terror was the morphine. I miss him and question so many decisions I made, taking him from his home to mine, then moving him from my home to Memory Care after 6 months and his 2nd fall here and he became wheelchair bound, telling him the truth when sometimes a fib would have been more comforting to his questions... But those last 2 months of his life were horrible. The Friday before Xmas, Santa came to visit, and Dad smiled. I hadn't seen him smile in so long I couldn't even remember. He passed peacefully a few days later, having spent the previous night 'plucking' imaginary things from the air and placing them just so as he lie in his hospital bed. I was with him when he passed the next morning. The wonderful nurse had some of his favorite music playing on CD, as I held his hand and prayed and told him I loved him and that it was okay to go.

Thanks Ahmijoy, yes Papa has been on Carbidopa/Levidopa for about a year and a half now. He hasn’t had much trouble swallowing yet, but I know that will be an issue. Our worry with his speech is that he is legally blind, so that will hamper him writing notes. He is also extremely hard of hearing. What a combination!

BeckyT, Dad was able to communicate up until a few days prior to his death. He did, however, become increasingly harder to hear and understand. I agree that you'll need lots of patience as his disease progresses, but it will be well worth it.

Hutrtbabygirl, I am so sorry, it’s tough to get through it. Papa has been through the falls, the delusions, and hallucinations. His speech problem started about a year ago, but has gotten dramatically worse in the past month. And yesterday, the dreaded saliva cough started. He’s going downhill pretty fast. Of course, some of it could be his age, but most of it is Parkinsons. I hope you find peace and acceptance.

Ahmijoy, will Papa eventually be unable to talk at all? I know there are muscles involved in his throat from the PD that complicate matters. But this stutter is from a lack of dopamine, I think. I’m just wondering what his progression will be. Thanks for replying.

Thanks talkey. It’s tough enough to watch him struggle to speak, without knowing how difficult it will become down the road. His Parkinson’s is progressing quickly, because he is 90 years old.

Thanks to you all for your help. Papa does have an alert on his wrist and we have our phone number as a one touch speed dial on his phone.