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Papa’s speech is getting worse. He can’t get his words out. He tries and gets mad at himself. His voice is still strong though. What happens next? Has anyone out there seen this? Does it just keep getting worse? Then what happens?

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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.
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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.
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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!
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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!
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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.
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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.
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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.
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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.
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Parkinson's is a progressive disease, try to encourage independence no matter how frustrating and discouraging it is. Patience to himself and from people around makes a huge difference. My dad has it for years, I just feel that if we take the most basic skills he might forget no matter how heartbreaking it is to see them struggle. At this point we try anything and everything to make it as comfortable as possible.
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jopangs, I agree. Papa is 90 and still lives alone. He won’t even think of any other arrangement. He shouldn’t be there, but we are trying to support his decision as much as we can, with help from PT and home health aides. At some point, he will have to move though, I’m sure.
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BeckyT and Hurtbabygirl, my heart goes out to both of you. You too, Jopangs. I lost Dad just after Xmas, and his diagnosis was 10 1/2 years ago. I hate this ugly disease and what it does to our loved ones.
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Carbidopa Levodopa is the medication my mom is on. She has had Parkinson's for 15 years. Her voice kept getting softer and softer. She thought it was my hearing. Apparently, this is a common story with Parkinson's patients. She went to Loud Crowd Speech therapy and that helped some. She has delusions, visual hallucinations and nightmares where she screams. Her neurologist said I could reduce her medication some. I took off one pill at dinner and that seemed to help with those problems. This medication also makes her sleep a lot. She uses a walker (when she remembers) and she is a high risk for falls. If your dad is alone at home, you might want to think about one of those Alert type wristband systems. Good luck!
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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.
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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.
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@BeckyT cherish the good days, it will be a rollercoaster ride; when you ask what is next, just be prepared for the unexpected. React to what needs to be done and make them as comfortable as possible and applaud yourself for what you are able to do. Keep in mind what you do, you do for your love ones and nobody else...less expectations, lesser heartache. If nothing makes sense, hold on to the simple smiles and memories, that will carry you on to every phase of this adventure... Stay Strong especially for them.
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Thanks jopangs, that’s the most important thing to remember.
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Does anyone know what happens when a loved one with Parkinson's becomes completely bedridden, doesn't recognize their spouse of 66 years, swallowing problems, sleeping almost all the time? Just wondering if I'm about to lose my dad? He's going down so fast.
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Hurtbabygirl, I only know Dad's story, and they're all different. Dad could transfer with assistance up until his last day or so. And those last two days, he didn't recognize anyone except me. Of course he had dysphagia for a long time prior to that but opted for comfort (food of choice). And, he had already been sleeping much of the time. Do you have hospice in place?
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Talkey, the nurses have suggested it. He is having a swallowing test Thurs. It’s looking like hospice is our next option. I don’t want to be selfish and I know that day is coming, but I dread losing my dad. Just wondering how much longer I might have with him. I’m torn between giving up on trying to get him better and going to comfort measures. Just seems so final for this life. I know I’ll see him again one day but just so hard.
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My husband has a lot of trouble getting his words out but he is diagnosed with dementia/alzeimers. Could he have Parkinsons?
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