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Topic "Help me live" Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2012.02.08 20:12
My husband said this to me today. I don't really know how to take it, since I am so frazzled doing everything there is to do in our family. I try to help and support him all I can, but between everything I have to do every day (and just tick off what all that entails when you have young kids), I just don't know how much more I can do. I even walk or bike with him at least once a day, and most days I think I could fall asleep walking.

What does this mean? At first, I felt so sorry for him. I have no idea how horrible he must feel all the time. But then I thought, what the heck? I can't be someone's reason for living, they have to want to live on their own. We have fabulous kids, lots of reasons for living, but I don't think he sees that. Or if he does, it's not enough. Or maybe it wasn't enough today.

I feel so pressured, and it's not fair. I can't do more than I already am and I am sad that he seems to expect more. I wish I could cure him, make him feel better, make everything (or anything!) normal, but I can't. I didn't even know how to respond, so I said nothing.

Has anyone had something like this said to them, and what did you do?

By chroop67 On 2012.02.08 22:11
Although my mom has never said this to me, in those exact words. she does put a lot of expectation on me to be the source of her happiness. It is a daily ride on the roller coaster of guilt. I have to keep telling myself that the PD has altered her and realize my limitations. She is a huge part of my life (good and bad) but she is not the whole of my life. I choose to believe that my mom in her 'purest' form would not want me to sacrifice 'all' for her. She lives in a great facility and although this is not the life I want for her, I can't change it. If we don't take care of ourselves there will be nothing left of 'us' to take care of 'them'. PD is a disease of the brain and affects more than movement, it affects personality and sometimes the person we love becomes someone we hardly recognize. Take care and know that you are doing a great job of a hard arduous task.

By LOHENGR1N On 2012.02.09 00:08
Lurking, I believe in past posts didn't your Husband kind of shut down and isolated Himself after diagnosis? If I'm remembering rightly? You have had all the school functions and things involving the children to tend to? I hope I'm remembering correctly or I'm going to make an ass of myself here.

If He's not depressed, then you might be reading the statement wrong? Maybe He's asking for your help to regain some of the living He chose to avoid before? Maybe you in your compassion and loving heart have taken on so much He doesn't see much left for Him to do or contribute? He might be fumbling trying to get back into the children's live's and yours? Not that He isn't there but to really reconnect with all of You? You said He's got all the reasons to live but maybe he can't or doesn't see them, it might be the opposite. He does see them but is afraid of rejection by his family if he tries to become involved again in Your daily activities. He might have found and zeroed in on this but feels he needs your help to become re-involved? I could be so completely wrong with this but I might be on the right track also. This is just my take on what you posted. Way back when I was first diagnosed I went through some very dark times. What pulled me out of them was My children. I was young 33, my children were 11, 8 and 2! With a future blacken by this disease I struggled but I thought what kind of example am I going to set for my Children? I decided my legacy was going to be never give up don't give in and face adversity head on. If life takes something from You there are options and ways to deal or work around the hardships. I have the feeling your husband might have hitched up his britches and is going to try to give his legacy to his family. We're all full of self doubts an with this disease we have plenty more of them but a time comes when we have to walk again and enter life again. Ask him what he means? If he's asking for your help to get back into life give him some home tasks to handle even if he struggles at first. Don't go for his daily walk have him wait till after supper or after the children are home from school and everyone go for the walk or have the children go with him a little Dad and Kids time. It will be awkward for a bit but as he figures out ways to help the family he can teach the children lessons only he can. (Mom doesn't do it that way! I know but I can't do it the way She does because of tremor or dyskinesia or etc but if I do it this way it works also). Improvise, find a different way to get the same results don't give up. If this was his plea in not so many words "Help me live" I hope my long winded post helps. Take care, best of luck and hang in there!

By packerman On 2012.02.09 11:38
i have to agree with Lo on this one.
giving him some way to "make contrbutions" helps my husband so much. whether it's helping our grown kids with their computers(he's a geek) or putting something (that i have already prepared) in the oven for dinner while i'm at work, it still helps him feel like he's a part of the family.

and i look for opportunities to thank him for his "outside the box" thinking in coming up with ideas that i haven't thought of.

even going down the ramp in his powerchair to the driveway to get the mail is something that helps me, cause it's one less thing i have to do. he even vacuums from his powerchair sometimes.

not knowing your kids ages...could your hubby check homework, help with dinner (i.e. salad w/fixings), read to them before bed, etc? i like the idea of a family walk/ride in a powerchair or using a rolling walker.

i agree that depression may be in play. mine had no relationship with our kids until he got on antidepressants. now, 5 years later, they relate much better.


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