For those who care for someone with Parkinson's disease
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Topic Dinner by Nine? Go to previous topic Go to next topic Go to higher level

By ysracer On 2013.08.15 16:38
It seems whenever my wife with PD wants to go out for dinner, it takes hours to get ready. like last night. I am home by 5:45pm and was going to make some cheese quesadillas. My wife says don't eat now I want to take you out to Flo's for dinner. So I say OK let's get ready. meaning you get ready I'm ready to go and hungry.
Well first it's I have to get my shoes, then "I want to change clothes", Then "I just need to take my meds", then "I just need a half hour for the meds to work", then "maybe we should just go to a drive thru", Then "why don't you just go pick something up", Then "OK I am ready I just need to fill a bottle of water", Then "I need to get out my ATM card". Then "I just want some candy, do you want some".

No, I want to get dinner, can we go?
finally at 8:30pm we leave to go get dinner at flo's. They close the kitchen at 9:00 so we just made it.

I only wish this was a one time thing. but it's more of a routine these days.

Drives me crazy.

By LOHENGR1N On 2013.08.15 19:28
Welcome to the world of Parkinson's Disease, expect it to get worse. If only for a day I could find a way for caregivers/partners to experience the ups and downs that engross Us daily. Not for any punishment but for more understanding. The every day awaking feeling like crap, swallowing down pills and then having to wait for them to "kick in" (the feeling that they are starting to work so we feel less like crap) the urge to get up and get going before they work but the knowledge that if we do we risk falling or at the very least bumping into walls and door casings knowing that if they aren't working we'll spill our coffee, drop our keys fumble with everything and most of this in front of our loved ones. And Yes we'll see those glances and faces you don't think we'll catch, the sadness or even pity which most don't want. Oh that this were the end of it but several times a day we must repeat the ritual of pill taking. We feel the med's aren't working as well and know we have a time coming when we'll feel like crap until the next dose starts to clockwork all day long we travel between these two realms of existing. Then in time even these med's don't hold to this schedule, they like to stop then start working again in mid dose. Then We waver, We change plans, we'd like to go out but what about you our loved ones? What about the restaurant and other diners? Are we going to drool? Do you want to eat watching someone drooling? We're self conscious about dropping our food or utensils. We fear our medication won't last through the waiting for our food then the course servings....we stress which makes the experience even harder and more unsure.

If only there were a way to show others what our life feels like and how it is to live with this disease just for a day. Yes it can be maddening, it can be frustrating to see, but to be trapped inside this is more maddening and soooo frustrating! Those caregiving can step away if only for a brief time, get out and doing something, We cannot at most we have a time between doses where we can tolerate life a bit better but never fully like before. This disease steals life from us but cruelly a bit at a time, it robs us of our voice to communicate and we are told to speak up, or we're mumbling. It robs us of facial expression and we are thought to not care or to have lost emotion, it is still there we just can't express it as before PD.

I could go on and on but I'll stop. For all the wishes of caregivers of the many things they wish, We patients wish a million times a day that things were different too. We wish ..........and we wish others could somehow understand and not sweat this small stuff.

Doc Holliday: What did you ever want?
Wyatt Earp: Just to live a normal life.
Doc Holliday: There's no normal life, Wyatt, it's just life. Get on with it.

By lilflower On 2013.08.15 19:37
Well said. As a loving caregiver who spends 24/7 with my PD hubby yes we both go through the stress and frustrations maybe not in the same ways but together. You just made me want to go out. I'm glad the timer went off pork chops are ready so we'll eat in tonight. We'll stress another evening about where to eat, what time what to eat .........

By jcoff012 On 2013.08.15 22:04
Bravo, Al! Well said. In our situation, it is I who is the caregiver and so I am not able to fully understand your and Carl's feelings, but I try.

I do, however, completely agree with you. I have said basically the same sentiments over and over, but it means more to me, and it should to others, that YOU so eloquentlly give insight into the PD patient's world.

We do not intend to face this disease with blinders on...we do, sadly, have many years of experience with PD, so we are waging a war against it. I do, however, want my husband to enjoy life as long as he can without me complaining or with unrealistic expectations. I do not know how he feels inside, but I can do my best to help him, or leave him alone if that
is what he needs. No one said we get through life without pain. I wish life were that simple.

Again, Al, thank you for saying what needed to be said...and needs to be one can understand, but we CAN do our best to make this life as pleasant as possible. Jane

By olpilot On 2013.08.16 00:48
Wonderfully said

By ysracer On 2013.08.16 11:43
Thanks for the prospective LOHENGR1N.
Makes my issues seem petty.
I do see the affects of the disease and try my best to help cope with it.
I went to a couples therapy yesterday with my wife and we talked about the things that aggravate us.
I am really trying to be better at supporting her without complaining, and she wants to do the same.
I do not look forward to what the future will bring, many of the things I have read here scare the hell out of me. I know it scares my wife also knowing this is going to be her fate.
I try to live for the present and at much as possible try to put the negative part of the future out of my mind and focus on the positive. But once in a while I like to rant. But then afterwards I see the pettiness.

By parkinit On 2013.08.16 23:23
Reality Check time, Al. I, too, thank you for your perspective.

We whine, yes. We wail, yes. We complain, yes. But we do love our PWPs. We just need a place to go to vent and this is the place for many of us. Once we get it off our chests, it allows us to go back, take a deep gulp, and help our loved ones fight the battle.

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