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PDCareGiver posted:
My 80 yr old husband has had PD for several years and in the last few months his symptoms are getting worse. I believe he's been in denial about the progression as he often won't discuss planning ahead such as using a cane now because he fell twice in one day. He's still fairly active and works part time. Also, he's developed, of late, the "pill rolling" symptom. My question is what is the best approach in talking to him about his condition as it appears he is shutting me out. Also, since he can control the "pill rolling" if told he's doing it, is it recommended to remind him of it? He does have a neurologist and sees him every few months and due to the recent falls has moved a later appointment up. I plan on going with him to see the doctor but I'm concerned about how to bring up a discussion about the emotional aspect of the disease in a 3 way conversation. Any advise would be appreciated...
worn1 responded:
What is pill rolling?
I have PD and also a care giver for my husband. So i can see both sides of care. I'm glad he has not stopped you from going with him to appointments. After I questioned his doctor concerning the suggested chemo my husband band me from going with him. to avoid a confrontation Call his neuro and explain the situation. that is my care giver side.
this is my pd side:
Our greatest fear is relying on some else, no longer in control of what happens to us. when going to the grocery store ask him to push the cart. This helps with balance and makes walking easier. PD safe your house. take up throw rugs, no cords etc. we do not always pick up our feet. we shuffle. I find this expcially true after sleeping. Our memory sometimes fails--that may be the problem with meds--did I take it? We sometimes forget words or what we were going to get. If his memory is starting to fail have it checked out. there are medicatiions he can take. the difference between alzheimer and dementia is alzheimer the memory is lost where as dementia it takes awhile but it comes back. FYI there are several types of dementia. How do you feel about dogs? Can you handle a large dog? I have 2. I call them my therapy dogs. If you both love dogs consider a service dog. A service dog can be trained to do things like picking up items, opening doors, standing still while he is used to help a person stand that has fallen etc. Service dogs help with independence and emotional support. There arae some organizaations that pull animals from a shelter and train them. This is my personnel opinion. Ask your neuro what he thinks. Some agree with me some do not. Your neuro knows you and can guide you on your dicission. I do know of a service dog that is no longer needed he may still be available let me know if you are interested and I will follow up.
There are none so blind as those that will not see
balmayne1 replied to worn1's response:
Hi worn1,

I also have PD and my husband is my caregiver. My husband cannot handle it. He stays on his computer and tells me to rest. He will not take me anywhere.

What suggestions do you have for me?
PDCareGiver replied to worn1's response:
Thank you for your response and suggestions. Firstly, pill rolling is when he's is relaxed watching TV or reading, he's constantly rubbing his index fingers against thumb( as if he's rolling a pill). Secondly, he is getting more forgetful about taking meds so he now keeps his pill box out where he can see it as a reminder. He does forget words of late so it takes him a little longer to carry on a conversation and of course it causes frustration for him. I don't think he has the patience for an animal so I'll keep that on the back burner. I really appreciate your sharing about the control aspect because I know that must be on his mind as well.. I'll be making a list of things to ask his neuro and will run it my spouse to see if he can add anything else. On the high side he is talking a little more about it. I'm careful about how often I query him on his symptoms which helps too...thanks again
PDCareGiver replied to balmayne1's response:
Dear Balmayne ~ Talk to your neurologist immediately! He should be able to give some advise and also recommend other resources such as local PD groups to share information and even provide transportation. Bug definitely have a chat with your doctor...
njladyluck responded:
Hi, I feel your fear and confusion. I had to take over my mother's life because of Alzheimer and vascular dementia and it is really scary to get into another person's personal business and discuss things that have an impact and possibly chance her life and lifestyle. I found thought that it has to be done. My mother was ill and she was in denial and she had started getting in trouble. I would always have a conversation with my mother before we went to the doctors about what I wanted to discuss with the doctor. Even though she didn't like my questions, she wasn't shocked when I asked them. Also she was able to give me her input on what I wanted to discuss prior to the doctor's visit which was very helpful to the both of us. Good luck.
PDCareGiver replied to njladyluck's response:
njladyluck ~ Thank you! I feel I'm going in the right direction now.
worn1 replied to balmayne1's response:
Sorry it took so long to reply. I have the same problem. Not onlly will he not go anywhere with me he does not want me to leave the house. He also in denial. I am expected to do what I did before Parkinson's. I still work, go where I want to go. I do not listen when he says you donot love me. He refuses to help around the house. I do what I can. My situation is a little different than yours. My husband has been treated for cancer, lost his job due to cancer, when he returned to work they had been bought out by another organization, installed a new computer system. new analyzers. He asked for 1 week of individudal training. He was told they did not have the stafff to do this and he could either retire or they would fire him.
Taking the long way around to tell you until he accepts your diagnosis continue to do what you want to do. His staying on the computer is his way of avoiding acceptance of your illness.
Your neurologist may be able to recommend someone he can talk to or maybe he can talk to your husband on your next visit.
I could be wrong. Before calling your neurologist ask your husband why he will not take you anywhere. Why does he spend do much time on the computer? Write down your questions, tell him how you feel. Before you do this make sure you are prepared for any response he may give you.
There are none so blind as those that will not see
lovedogs1955 replied to worn1's response:
Reading your posts makes me realize just how lucky I am with my family and friends. My journey began with Stage 3 breast cancer back in '02 when I was 46. Of course we treated me as aggressively as possible. This treatment and my body didn't quite get along so well from the very beginning. Started having all sorts of strange symptoms as the months and years went by. None of them seemed to form a single diagnosis until '08 when I was diagnosed with Parkiinson's.

From the very beginning, I have spoken clearly and without embarrassment about what is going on with my body. Because of that, I have always had the support from my wonderful friends and family. My husband will, at times, sort of put his head in the sand especially when I start having new signs of the Parkinson's, such as more tremors in different body parts (head, arms, etc) and anxiety. Sometimes I ask him if he has noticed a change and he tels the truth. My very close friends do the same---others tend to say how "wonderful" I look, etc. I know I look terrible----bear in mind that since 02 I have lost about 40 pounds from my petite frame mainly due to the digestive issues Parkinson's has bestowed upon me.

Okay, I seem to be getting off topic here, so I apologize. I guess what I am trying to say is to be honest and direct as possible. Try to be clear when you are telling your spouse or co-worker what it is that you need. Prepare for your Neuro visits (and any doctor visits) by trying to keep some sort of log to help you remember. I keep mine on my phone.

All of the advice given in the other replies are all very true and helpful. Please keep us posted and we will try to help you as much as we can.

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