Tuesday, April 29, 2008

A Family Divided

After writing my last post about my dad seeing Keith for the first time in full-force PD mode, it made me wonder what he really thinks about PD. I really wish I knew what my family thinks about when they think of Keith having PD, or if they even think about it at all. I know I tend to write more about what my own family thinks and feels as opposed to Keith's side of the family, but that is only because I am very well aware of their thoughts and feelings. Keith's brother is in far worse shape than Keith is, and hopefully will ever be, so they have all been dealing with this much longer and on a much deeper level than anyone on my side of the family. The Lewis family has had PD smack them right in the face. They have no choice but to sit up and pay attention. My side of the family is new to all of this. They have no clue what they are in for.

I know that there are several members of my clan who just don't get it. They do not see Keith everyday so they can't possibly see the changes that take place when he works too hard or is exhausted. It does not affect them in any way, so they simply don't think about it. To them, Keith having PD is just another one of those little facts - like the year he was born or the type of car he drives. Keith is 52 years old, drives a Chevy, has Parkinson's. Because they choose not to acknowledge it now while they still can, they will likely be the ones to deliberately ignore it and shuffle around uncomfortably, not knowing what to say or do when my disabled husband is wheeled into the room.

Then there are those who do acknowledge that Keith has PD, they just don't know much about it. These are the family members who, though they also don't see Keith and his symptoms on a daily basis, are much more aware of the changes in his body because they are looking for them. While they might not go out of their way to get as much information as possible, they never hesitate to ask us about it. They ask about Keith's health, they check on us after a dr. appointment, they are genuinely concerned about us. These are the family members that will likely not know what to do when my disabled husband is wheeled into the room, but they will try to do something - either make a joke about PD to lift his spirits or face it head-on by talking directly to Keith about the disease. This is the group I will likely as not be much more dependant upon if things get really bad. This is the group that will care enough to help.

So, which group do you fall into?


Larry said...

I'd like to think we're in the group that will be there when you need us, as much as we can be. A lot of our time right now is spent helping our daughter, Jennifer, her two boys, and her husband, and Susan's mom, who turned 85 on 5/2/08, and our dad too (now 92), whenever there's anything we can do for him. Just know that you can always call us, we're just down the street, basically. We ALL wish we could somehow help with Eddie, too, but its not so easy, since he's 14 hours away. Keith and Eddie are always on our minds, and in our prayers.

Caleb Manscill said...

Great post and introspection. I feel that people do not take the time enough to really search out their feelings. As I've become involved with blogging about Parkinson's disease I have developed in my feelings in thoughts and am certainly a part of the second group--the group that likes to reach out and help others as much as possible. Thanks for digging out these thoughts and feelings for me.

Caleb Manscill

IndyMama said...

Hey there. :)

Life with PD, either as a caregiver or as a patient, can be incredibly discouraging, not to mention more difficult that anyone can imagine. The good news is that this disease isn't as rare as some, and even if friends and family don't understand (which they often don't, even though they have the best intentions), there will always be those out there who do understand - support groups, fellow sufferers, close friends. Those who don't experience PD first-hand just don't understand how hard - and how discouraging- it can be. And it's unfair for us to expect them to understand PD otherwise, really.

To know that you will eventually be disabled, or have to take care of someone who is disabled, someone who can't move but is completely alive inside. It's devastating to me to think that my children will probably eventually have to take care of me, and that, even though I am getting a degree and planning on a professional career, my dreams will eventually be cut short. It's discouraging to me that my relationship with my husband is already compromised by my fatigue, my sexual dysfunctions because of PD, my stiffness or pain, etc. It just plain sucks sometimes, and there are times where I just want to give up. But it always gets better, even a little, especially once we find those around us that can empathize.

Hang in there, just don't expect that everyone will understand, because they won't. But I'm sure that your loved ones - no matter what category they fall in - really do mean well, even though they aren't helpful in the way that you need them to be.

Caleb Manscill said...

Thanks for the follow-up comment. I especially like the point you bring out about trying to understand but will never be able to because they do not experience it. I agree and I think that it's the same with most things in life. People can't understand what a bacon, lettuce and tomato sandwich tastes like until they taste it. They may have tasted similar sandwiches, or feel like they have had similar sandwiches, but they'll never completely know what it tastes like until they taste it (ok, I realize that was probably a horrible example and that it just made me hungry:).

Mary said...

Of course you are in the "helpful" group! :)
The entire post was about my side of the family anyway. I know I shouldn't make comparisons, but sometimes it's hard not to when I see how different you guys are from most of my family. I don't expect to need a lot of help for quite some time (knock on wood!) but it's nice to have that option acknowledged every once in awhile - something you all are good at.

Mary said...

Indymama -
You are correct in everything you said. I can't expect people who have never had to deal with this to be able to understand what it's like. I don't necessarily expect my family to understand PD, it would just be nice if they acknowledged it from time to time.

Good analogy Caleb! Now off I go to Subway!!

Caleb Manscill said...

Mary, kind of random, but you just mentioned that your taking off to Subway... do you mean Subway Canyon--a slot canyon in Zions National Park in Utah?

Mary said...

Caleb -
sandwich analogy = BLT = me craving = Subway restaurant!


I am nowhere even CLOSE to Utah!


Caleb Manscill said...

Ok, I get it--I guess I didn't anticipate my comment influencing you so much :)

Patient on-line said...

Mary, This article intrigued me because it was so right on. As a person with a movement disorder, I see exactly what you are referring to. It is as though some see PD through the eyes of an oversimplified view from the popular media, which says, "take your pills and stay busy." I think that it takes family and friends a while, and a different time frame in each case, to get to where they accept and acknowledge the truth. Keith is facing so much more than is evident on the outside, as you are so aware. Eventually, most will recognize the mountain you and Keith are climbing.

Unfortunately, some individuals never will. What should be our response? I hope it doesn't take that wheelchair to get them to see fully. Your friend, Dan

PS Thanks for sharing the poems, as well.

Mary said...

Thank you, Dan!
PD is one of those illnesses where you just don't have any real interest in it unless you have to. And I do understand that. I mean lets face it - are we doing everything we can to acknowledge and understand other diseases, like Alzheimers, for instance? No. Most of us don't go out of our way to do so unless we have to.
I do, however, feel very strongly that if someone in your family is diagnosed with such an illness, then that's your sign to do the research. I certainly hope that certain individuals will "get with the program" so to speak, before the wheelchair happens. (if it happens)
It's true that the media oversimplifies PD. When we do finally get to see the reality of it, like when MJF went off his meds while on television, many people don't believe it's real - hence MJF being accused of exaggerating his symptoms.