Friday, November 14, 2008

Explaining and Asking

Lately I have found myself in a bit of a quandary. It has become more difficult to explain Keith's physical limitations, in turn making it more difficult to ask those around us for help. How do you explain a person being "in between?" Keith is not physically disabled, yet he is definitely on a downhill slope. If you can't make others understand the physical limitations of one not yet disabled, how do you explain the need for help?

I have always been proud of the fact that my husband was one of those urban legends or myths you hear about. You know - the guy that doesn't mind washing dishes, changing dirty diapers or throwing a load of laundry in the washer. When my girlfriends and I get together the conversation usually rolls around to whining about husbands and why they never help out around the house. I have always been able to boast that MY husband will do anything I ask. I did not need to nag or badger him - I simply asked. But recently things have changed. I don't mind that things have changed as I understand why. The PD is progessing and Keith just can't do what he used to do. I rarely ask him to help around the house anymore because I feel so guilty asking him to do anything other than rest. So now when I get together with my friends I try to explain to them that Keith can't help out anymore. They roll their eyes and get quiet. I know what they are thinking - if he can work 50 hours a week then he should be able to take out the trash. Hell, I've had that very same thought many times. I have since come to understand that once Keith reaches his limit, he's done. He has a certain amount of time each day when he feels energetic and productive. Once that time is up, it's up. He needs to rest from that point on or he'll be in worse shape the next day. I know it. It's not so easy for others to see it.

Keith and Bryan recently attended a PD educational conference. During the Q&A a man asked how he could get his family and friends to help him. The answer - ask. Ask for help. Seems simple enough, especially for a PWP much more progessed than Keith. But this solution presents a couple problems for me. First of all, I have never been good at asking for anything, especially help. Call it being stubborn, call it having too much pride, call it what you will. I just don't like asking for help, particularly from my family. Second, a large part of me still believes that if they really cared they would see for themselves that Keith needs help, and then I wouldn't have to ask.

Speaking strictly of my family, I hear a lot of Oh he's fine! or He's still getting around okay. He'll be alright! or Don't worry. He's a tough guy! Every once in awhile when I try to tell it like it is, I get Oh man! Hmmm . . . yeah, that's too bad. What a shame! I know they mean well. I know they are trying to make me feel better, make me believe that he will in fact, be just fine. But I wish they would finally stop trying to gloss over the reality of what actually IS. What they see is a man who works 50+ hours a week and is rebuilding a 69 Camaro. They see a man doting on his children, planning to have another. They don't see the full picture and trying to explain it to them is next to impossible. Seeing is believing, so they say. And because of what they see, they simply do not believe how difficult it is for Keith to do so many different things. Maybe he will have to be in a wheelchair before anyone else gets it and offers help. Maybe I just need to suck it up and learn how to ask for help.


KEITH said...

AHHHH My sweet are so proud and so loving. And stubborn. I feel so bad for you. Sometimes I think it must be harder to be you than it is to be me. Good Post though. Makes one wonder what part of progressive and incurable folks don't understand....but there is little time for self pity or for you to worry yourself with this because all too soon it will be clear to everyone and in the meantime ....we have life and love to live.......

One Life said...

I'm not sure if I sent this to you yet, but someone on the PD board posted it and I absolutely love it. Pass it along to the people who don't understand. It was invaluable to me, and to my children, so that they could have a concept of what things were like for B.

Keith - B's theory is the same as yours - If we concentrate on living this life to the fullest, we don't have to fixate on the bad things (which will come sooner or later anyhow). It's taken me a long time (because I'm the same as Mary - I need to have things straight in my head so that I can plan that path and be prepared) to try to push it to the back and just live. Thanks for your gentle chides, and also for appreciating the painful position we spouses are in who have to stand back and watch.

Patient On-line said...

Greetings "My Life with Shaky,"
I really got something personally significant from you last article. I read the final paragraph aloud to my wife, who understands exactly what you are saying. Our prayers and support are with you!

I have appreciated so much your support for me and my writing during a difficult period of my life. I am writing a book about my experience and want to include a list of good blogs that deal with similar neurological illnesses. I have listed yours in the manuscript of "Parkinson's Plus Me: Living with a Movement Disorder." Do I have your permission to do so? Thanks for your consideration. Dan

Mary said...

Babe - we have the best of life and love. Thanks for reminding me!

One Life - I had not read The Spoon Theory before. What an amazing piece!! Thank you for sharing. I'm going to send it all our family. Hopefully it will help . . .

Dan - Thank you! Of course you have our full permission to list the blog in your book. We would be honored! Thank you for including us and allowing us the opportunity to reach out to even more people!!