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Late stage Parkinson's issues


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#1 jdhampton221

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Posted 14 March 2013 - 02:27 PM

I am dealing with a father who has late stage Parkinson's. He can't be left alone anymore and I need to know if others out there deal with the issues I do. First of all he has episodes of weakness where he can't stand and his body goes limp. When this occurs his speech is slured and he has no ability to understand what you tell him. I have shook and yelled at him but he does not respond and have even had him snore like he goes to sleep. It usually last about an hour before he gets back to normal. He is also starting to have incontenience issues and he refuses to wear the pull up kind of mens diaper underware. He is very stubborn and difficult to deal with. Do PD patients become irratable and refuse help? I would appreciate feedback. Thank you.

#2 Marijke

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Posted 15 March 2013 - 03:39 AM

My husband has had PD for 13 years, first symptoms at age 50, and is still able and active. He has however, become excessively subborn and extremely difficult and can be verbally abusive. He will never ask for help - but then blames me if things go wrong -so stubborn, irritable, refuses help are all words that describe his behaviour. It is my view that the medication when combined with the mental impacts of PD seem to make the behaviour worse, as he changed medication in 8 months ago and is definately more difficult since the change. My thoughts are with you - please ensure you take time off to look after yourself.

#3 OneWingedVictory

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Posted 15 March 2013 - 06:07 AM

jdhamptom221

I can certainly appreciate how challenging your caretaker role must be both physically and emotionally. I would like to suggest that you speak to your father's physician or another health care professional (nurse, clinical social worker) associated with the medical practice your father goes to about your observations of your father. These periods of non-responsiveness do not sound like "normal" Parkinson's behaviors. This behavior may be associated with his medications (too much or too little or the timing of his medications might be off) or it may be a symptom of another medical condition.

I would also suggest you discuss with your father's physician or a nurse or social worker how you might better care for your father when he is non-responsive, irritable, and experiencing incontinence. There are many alternatives to explore in dealing with incontinence that do not require the person to wear incontinence pads. These alternatives include a toileting regime. The staff should be able to give you some options for dealing with your father's incontinence that will work better for both of you than what you have tried so far.

If you find a dead end at the physician's office, and you live in the US, please consider contacting your local office on aging to discuss your situation. Depending on your father's financial and medical situation, he may be eligible for in home support services such as a home health aide to assist you with his basic needs.

Finally, shaking and shouting at a person for whom you are providing care is never an acceptable way to handle their behavior no matter how frustrating the situation. It is considered elder abuse. You need to find an outlet for your own frustration -- here again, if your father is seeing a movement disorder specialist or is being treated at a Parkinson's Center for Excellence, there are resources available to help you as a caretaker. You need only ask.

Please do search out resources to help as soon as you can. While is understandable that you would be frustrated by your father's behavior, yelling and shaking are not appropriate responses. Continuing to engage in that sort of treatment of your father could result in a police visit or even worse.

Best of luck to you.

OneWingedVictory

Edited by OneWingedVictory, 15 March 2013 - 06:09 AM.

The One Winged Victory of Samothrace is a metaphor for our struggles, despite the odds, to keep steady and accept grace in the face of punishing adversity.

#4 jdhampton221

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Posted 15 March 2013 - 11:58 PM

OMG I do not know how I stated what I was trying to convey as being abusive. I would never in any way be abusive to my dad. You have misunderstood TOTALLY!!! So much for help from you folks. I will pray for you

#5 Luthersfaith

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Posted 16 March 2013 - 08:12 AM

OMG I do not know how I stated what I was trying to convey as being abusive. I would never in any way be abusive to my dad. You have misunderstood TOTALLY!!! So much for help from you folks. I will pray for you


Please hang in there. Misunderstanding in this form of communication is easy. Patience is key in dealing with people with PD.
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#6 hkewf

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Posted 17 March 2013 - 10:17 AM

JDHampton-
One response (that you were not necessarily expecting in response to your post) posted by one respondent doesn't necessarily reflect the way in which others view your post. So please do not lump everyone (including me) together... it would be like lumping all PWP together and ascribing one symptom to all because one PWP has that symptom. And I KNOW that you know that all PWP do not necessarily share the same symptoms; otherwise, you would have been able to have your concern about your father addressed by his doctor (because it would have been boilerplate stuff) and you wouldn't have needed to seek additional outside advice from those on this forum.
Anyway, on to your father and your first post. I feel for you... you sound very frustrated and quite a bit scared. I will certainly say that if I encountered nonresponsiveness in my husband (who has parkinsonism), I would probably freak out! Given that you said that your father's body goes limp and his voice is slurred, among other things that sound as if they are being depressed, it sounds like one overall response to something that is not right. Have you checked his medication amount and timing with his doctor lately? Could this be a moment your father is overmedicated or undermedicated? I ask because you said that he returns to 'normal'.
In terms of the incontinence issues, your frustration is clear and understandable... you are probably already doing quite a bit for your father and maybe you feel like this is just pushing you past your limit in terms of what you can handle. Think of your father, though, too. How do you think he feels? To be a grown man and asked to wear adult diapers basically. Can you have a lucid exchange with your father when he is 'normal' to better explain how you feel about the need for this change and also to have him explain how he feels about it so you can better understand? Perhaps, there can be some sort of compromise. Maybe there is just one part of the day where you feel like this is a problem and you can work out a toileting schedule? Or just that your father wears the adult pullups for a few hours when you both realize that toileting is going to be problematic?
I hope that my suggestions aren't pie in the sky and that you are able to communicate with your father and he with you... that is probably the most important thing and, depending on your relationship with your father, maybe the easiest or could be the hardest thing to actually do.
Good luck and hang in there. As Marijke said, remember to take some time for yourself. I'm learning that is really important.

#7 jdhampton221

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Posted 17 March 2013 - 03:45 PM

Thanks to hkewf. I appreciate the understanding. I guess some ppl are just too sensitive to wording because if I had said that I screamed and slappped my father that would be considered abuse. The first thing I learned in CPR class is that if you find a person is unresponsive you shake and yell to see if you can get a response. He is very carefully monitored with his meds and doctor. The docotr thinks his episodes are coming from his bloodpressure bottoming out. He is on medication to raise his BP and the dose has been increased. He is on Sentiment, Requip and Midodrine to raise the BP. It is scarry when this happens to my dad because he is 185 pounds and I have to help him to keep him from being hurt which is a struggle. The thing I have learned to do is run to him with his wheelchair so he can sit but as the episode worsens he tries to slump down farther and slide out of the chair. This does not happen daily but there is no warning. I just wonder if others of you had to deal with a person going limp and not being responsive. He doesn't go completely out but he can not understand what I say to him. He is in the late stages I believe and when reading some of the post I see that the symptons have been there for years. He has had night terrors for years and lost his sense of taste and smell years ago also. About 5 years ago he lost his ability to keep a check book or any type of working with numbers. My mom died 3 years ago which did not help because since then his symptoms have worsened. He has hallucinations almost daily. Thankful they hven't been scarry for him. He just thinks he is in the woods when he is inside. He thinks anything in the room that is square is a dog house. Anyway I'll try not to lump everyone in one catagory. When I read one winged warriors post I got upset that anyone would would suggest abuse because I always treat my dad with kindness and the utmost respect. Parkinson's is a terrible disease and I feel for anyone who has to deal with it.

#8 OneWingedVictory

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Posted 17 March 2013 - 06:21 PM

Jdhampton221

I am sorry for the misunderstanding and distress my post caused you. That was certainly not my intention. I know from first-hand experience how difficult it can be to be the primary caretaker for someone. It is even harder when that someone is a beloved family member.

What I had intended in posting was to provide some suggestions on resources in your community that may be available to you and your dad to help in taking care of him. I was also, admittedly, concerned about some of the language you used in your post; you have since clarified what you meant.

As Luthersfaith mentioned above, miscommunication can occur when relying on email to convey complex emotions and issues such as those you are dealing with. I am sorry we had that miscommunication.

Best of luck to you.

OneWingedVictory
The One Winged Victory of Samothrace is a metaphor for our struggles, despite the odds, to keep steady and accept grace in the face of punishing adversity.




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