For those who care for someone with Parkinson's disease
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Some days I don't know how to do this. I can barely get off the couch due to my depression, and my husband can't get out of his chair due to PD. (We actually got him a chair that reclines (helping his edema greatly) but also ejects -- very very slowly, but still.) He ends up taking care of me at least as much as I take care of him. I HATE BEING NEEDY! I just want to take care of him, make him as comfortable as possible, and make sure he knows I'm here for the long haul. I'm so frustrated and scared. Could use some encouraging words . . . ~ Laurel |
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We all know what you are talking about. Some caregivers take or have taken antidepressants, when things get to be just too much. I would not let things get too horrible and would keep this in mind. If you dont' have a therapist or counselor or confidant, perhaps you could get one, the county dept. of aging may have some suggestions? Come here often even if it's only to vent. No one can take the enourmous pressure of being a caregiver to a loved one with PD alone, and should not feel like they have to. You are not alone. PD sucks, and it's OK to need help from others, just to listen if nothing else. Being proactive may help. Make healthy meals for you and your loved one, try to get him out and moving whenever possible, sit in the sunlight on nice days, etc. I'm a do-er, and usually feel better if I am doing something that might help my husband. We have young kids and PD has absolutely ruined our lives, no way around it. But I have to keep going for them, and try to make their childhood as good as I can even though most days, honestly, it's a real bitch. You just have to keep on, keepin' on, as they say. I'm really sorry you feel this way, and hope you can get some help and get back to feeling better. You have probably read many places that you have to take care of yourself before you can care for someone else. Be sure that you give yourself that care 
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Thanks. I do take meds -- and a whole lot of 'em to boot -- I take more meds than my husband! We're not doers so much, so it's a struggle to get us up and out. We both feel better when Steven does get some air and exercise. Preparing meals in advance is a great idea! I hadn't thought of that. We have young kids too, but they're his step-kids, so they have a very different relationship with him than I'm sure your kids have with you. Among other things, we knew about the PD before Steven and I got together. The girls are 11 and 13; I'm still not sure how much they "get," since it was explained to them when they were 4 and 6 and now they don't like to talk about it. (With me, anyway.) Thanks again for your thoughtful and welcoming response, "lurking," I really appreciate it. ~ Laurel |
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Laurel - Even though taking care of my spouse can be pretty intense (and he can be pretty demanding at times - like he will get in between a transfer and get stuck and call for help NOW), I do always, every day, make time for myself. I exercise, listen to music and remove myself, if only for an hour or so, from the caregiver role. We stay home most of the time and we used to go out quite a bit before, but I have to remind myself that I choose to be happy regardless, I choose to feel blessed regardless (and, frankly, I am in many ways), and I have assured him that I will stick by him through thick and thin (after some deep self evaluation on my part). If your mental well-being is not being taken care of, you cannot help your spouse. Do find someone or someplace to vent to. This will help immensely. You have us, here. We may be stranded in a big ocean and feel very alone sometime, but don't forget, you have a lot of us in that life boat with you! Hugs, |
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Hi, Laurel, My name is Jane and my husband has PD. He was diagnosed three years ago, but we are convinced he's had it much longer. His mom died two years ago, after having it 22 years. PD stinks. I hate watching my husband deteriorate. We have two adult children who are wonders and one who lives in denial and has hurt him to the core with her lack of compassion. He said, "I just don't think she likes me anymore. Now that I can't go places and do things she wants to do, she's not interested in me." Talk about hurting... So, you see, we are all facing a myriad of problems, but bottom line, we HATE Parkinson's. One thing that keeps me going is something my husband said to that daughter when she fliply said, "PD is no big deal. MJFox has had it for years and he's fine." My husband, who is a fan, said, "HE has handlers and the money to say, 'Stop the cameras, let's do that again.' *I* don't...not many do-overs with PD....I think of that often. If you had told me five years ago that we would be facing this, I would have denied it could happen to us. One thing that I keep repeating to everyone, sorry, is that while I faced cancer for five years, my beautiful doctor said, "Laugh every day...don't just chuckle...laugh out loud...You will feel better." and it helps...try it! Life often gives us the lemons to make lemonade, but if we take that lemonade and dump it over our head and laugh and laugh, we'll feel better...lol...til we have to clean up the mess! As LO always says, hang in there. Jane |
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Thanks, Jane. We laugh -- a lot. Steven is the funniest person I've ever known so the two of us have a lot of fun, and we definitely laugh at the PD whenever we can . . . When I started reading your post, in fact, I had to laugh: "My name is Jane and my husband has PD." Sounds like a bad 12-step program set-up. Just joined yesterday and I'm already loving it here. ~ Laurel |
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Laurel, We are going to be friends! LOL...GOOD one, I will watch saying that to anyone else! LOL Hugs, Jane |