For those who care for someone with Parkinson's disease
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By Emma On 2009.08.17 06:15
I have been lurking on this board for some time and decided to register this morning. It has been so helpful to me to read your posts and know that I am not alone.

My husband is 66 years old and was diagnosed with PD seven years ago, although I suspected it for about a year prior to that. I also started noticing signs of dementia when he was 55. I am 58 and worked as an administrator in a human service agency until about three years ago. I decided to take early retirement as my husband was getting much worse and the stress of caring for him and working became too much.

We have been married for 28 years, second marriage for both. He has two adult children. One lives about an hour and a half away from us, the other is across country. Neither of them ever call their father and rarely, if ever, return his phone calls. Interestingly, they are quite pleasant when we do see or talk to them. So, basically I am alone on this journey.

At this point my husband is having great difficulty walking and has started to fall. We just ordered a U Step walker and signed up for a medical alert service. He will be having an EEG this week due to some other symptoms he has recently developed. He has hallucinations (usually mice that he sees running around the house, sometimes other people in the house and a lot of auditory stuff). His memory is pretty bad, he has trouble learning new things, can't use a telephone or remote control (although he thinks he can). I've become quite the technology expert as I have to fix everything once he gets his hands on it! His judgement and reasoning are very poor and he is very argumentative. He also has obsessions with gambling and sex. He was difficult and not very empathetic before the PD, it's worse now.

I am very tired and very stressed and struggle with all of the same issues the rest of you do. A woman from our local caregivers support group keeps trying to get me to join them but frankly I don't want to. My whole life revolves around Parkinson's and if I ever get a couple of hours free the last thing in the world I want to do is spend it talking about PD.

Sorry that this is so long. Thank you all for sharing your stories and experiences, I'm glad you're here.

By Pearly4 On 2009.08.17 06:25
Welcome! I'm not caretaking any longer as my mother died suddenly in June. I do recognize and understand your feelings though, as I'm sure most of us do. I helped start a support group at work for caregivers and found it most helpful just to have a chance to talk to others in the same boat although I do understand your reluctance to give up whatever free time you actually to retain your SELF.

Is your husband on medications for the dementia? We started ARicept in the months before my mother's death and found it very helpful. She suddenly remembered how to use a phone and the tv remote again, began baking again (with supervision) and seemed much more herself. If you haven't discussed it with your husband's doctors, you might want to.

By Emma On 2009.08.17 09:06
Thanks for your message Pearly4! Yes, my husband has been taking Aricept for about four years. Initially it seemed to help somewhat but I don't think it does anymore. He's tried another dementia med too ... I can't remember the name ... but that didn't help either and he had some side effects from it so we went back to Aricept. There are days when he seems pretty on top of it and other days he's very confused. That's the nature of the beast I guess.

By bandido1 On 2009.08.17 11:43
Emma: Welcome! If you have been lurking on this board for some time you recognize that several of us patients are also available for questions.Both LOHENGR1N and I will be very candid (and sometimes brutal) in answering your posts, and we think straight answers from patients can often be very helpful to caregivers. Bob C

By Mary On 2009.08.17 16:11
Welcome Emma! Please visit this forum often - it is such a truly wonderful source of support from people who are or have been walking in your shoes! You can say whatever you need to here and we understand, the good and the bad. I look back on some of my earlier posts and it is like I am such a different person now. I have been caring for my Dad for over a year now and the disease has caused his mobility to deteriorate so much. This forum was a godsend for me! Hugs and blessings to you, Mary

By annwood On 2009.08.17 16:13
Welcome, Emma

You sound like you have all of your ducks in a row and are fully aware of what is going on with your husband's PD. I know from experience that doesn't always make it easier. I am so happy that you have joined us. Hopefully we can be your support group.

By Emma On 2009.08.17 16:20
Thank you all for the words of encouragement and welcome! Bandido1, I really enjoy your posts; insight and humor, it's a great combination! I feel like I know so many of you from reading this forum and I'm happy to be part of the group.

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