Fuck it. I give up.

[The Straight Story]

No, not on you all here on DU.

My wife was gonna take my daughter to her mom's tonight to trick-or-treat, but has been having dizzy spells and been feeling fatigued a lot of late. Her mom was disappointed of course, and lectured her about getting better medical care (the wife did walk 4 freaking blocks with daughter and her best friend while I passed out candy).

Hello people - Jesus, don't you listen??? She has Parkinson's, and she is showing a lot of signs of it ya know, and she is not too far advanced yet for Sinemet, so she is on Amantadine for her fatigue. But those meds, well they can fuck you up in ways you refuse to understand so she tries not to take them too much.

Hey - just go to the Dr and they will make it all better, give you meds and wow you are all ok.

Nope. And you just don't fucking get it, and it is pissing me off. Cause the one thing my wife does not need right now is a damned guilt trip. She feels bad enough as it is ok? And I do as well, because while she is not able to do the many things she wants to do (cleaning, etc) she relies on me to do them, and I suck at em - but damn I try.

So yeah, she can take the meds she has - but they make her paranoid, sometimes see things, etc - and she would rather be tired than freaked out. She is a good woman - a wonderful mother, and an excellent wife (not to mention a superb cook). And while I am standing behind her, you - her own damned family - are busy making her feel ashamed.

I give up. I gave up a life, career, and dreams to move here for her and so you could be close to her - and all you are doing is making her feel bad about herself.

Well let me tell you - she is a damned fine woman. Beautiful, smart, awesome in ways I won't mention here, and damned determined to fight this. And you are kicking her ass because she does not have some Dr that makes it all better for her.

Well, wake up people - she ain't gonna get over this like some damned cold.

Sometimes, I feel so damned alone in all this. And I cannot imagine how my wife feels.

I love you hun, just had to rant for you after what you told me tonight. It may not get better, but you know I got your back.

[Geoff R. Casavant]

1. You are never alone.

Remember your wife makes the fight worthwhile for you, just as you make the fight worthwhile for her.

I assume that's her photo at the bottom? Definitely reason to keep fighting.

[Guaranteed]

2. It almost sounds as if her family doesn't get how devastating

of a disease Parkinson's is. They need some kind of education on the subject, perhaps?

[aquart]

3. Her mother is scared to death for her.

There is nothing she can do so she's trying to do something.

Just like you. But you have different roles in this.

And CAREGIVERS SUFFER TOO. It is indeed very lonely, trying to be strong day in and day out.

You have to come to some detente with your mother-in-law. You two NEED each other. You have to agree you're not trying to usurp each other, and not to indulge in the fear (so hard). Or, at least, to recognize when you do. Did you ever ask her what you can do for HER? Has she ever asked what she can do, not for her daughter, but for YOU? If you haven't, it might change the whole dynamic.

What you are doing, as hard as it is and will be, you are doing for love. So is she. If you approach her with that, and let your MIL vent some...oh, that may be too hard for you to do right now. But think about it.

Try not to feel guilty about the frustration. I've seen awful things happen to caregivers because there is just no emotional energy left for anything else.

You said, above, "I gave up a life..." That's YOUR life. And it's as precious as anyone else's, healthy or otherwise. And no one is going to give you a tenth of the recognition and sympathy you are honestly entitled to about this.

Meantime, you do get the company of someone you love, cherish, and esteem. That's damned lucky, even with the drawbacks.

Good luck...and find some space for yourself in your days.

[SeattleGirl]

4. Oh, TSS, I hear you.

I agree with another poster: your MIL is scared at what is happening to her daughter, but unfortunately, sometimes it doesn't come out well.

And sometimes it grates on us.

My mother is dealing with some serious health issues, and while me, my two sisters and one of my brothers are all on the same page as mom regarding her treatment and her life, my other brother isn't. In his case, he was thrust into the "man of the family" role when he was 16 and our father died.

It's a new day, and he's over 50 now, but he seems to feel compelled to do the same thing again, even though it isn't necessary.

I know this is hard for you, because you love your wife so much.

When you feel a little better, could you maybe sit down and talk to your MIL?

How much does she know about Parkinsons?

Is she in denial about it's effects?

Maybe she is just flat out scared, and is resisting knowing the truth.

I wish you well, TSS.

:hug:

[KT2000]

5. Have had to learn

that having an illness includes sometimes putting up with, suffering from and making peace with ignorance other people have about illness. And some of the worst are family members and doctors!

You love your wife and see her every day - through thick and thin. Others cannot truly understand someone else's pain. If they can see a gaping wound or mangled limb - that makes it easier. But illnesses that are not always obvious leave room for people to rationalize and limit their emotions - for whatever reason.

Another thing I learned is that people have a limit of about three months for compassion. Beyond that, most people just expect the person to be well or almost well - even when the diagnosis is long term illness. It is just a quirk I have seen often - again, family members have been the worst.

Another thing I learned is that no matter how hard you try to explain, it just does not get through. All you can do is fasten your seatbelt and continue to be there for your wife.

Best wishes to you - as you know it is not easy

[Berry Cool]

6. Much wisdom being spoken here.

Scoop up just about anything or everything people are saying here and it will be useful, seems to me!

What KT2000 said about people having a limit for compassion is sadly true. Healthy people in general would really rather just not admit that there is anything that can bring a formerly sound person to his or her knees...for good, or in a degenerative way. They truly want to believe in the cycle of illness: you get sick, you turn the corner, you get well. When dealing with a disease in which the prognosis is more like: get sick, just keep getting sicker, not be able to do much about it, treat it but only with treatments that are iffy/have bad side effects, have good and bad days, and never really get better but just get progressively worse, they get impatient damn quick. They want to believe that we can all overcome anything if we just pull our socks up and deal with it, and are apt to accuse those who can't of being lazy, pessimistic and selfish. Because THE TIME FOR SYMPATHY IS UP AND NOW YOU HAVE TO GET YOUR ACT TOGETHER, so they can get on with their lives! :sarcasm:

I wish you both the best. There will surely be crappy days, but the more you work on getting people to understand that you and your wife are in this for the long haul and that you have no choice and cannot just "snap out of it," the more one thing or the other will happen: either they'll close up altogether or they'll finally open themselves up enough to let themselves understand your situation and realize "Someday it could be me or someone I love, and how would I want people to treat us?" And when they do, they just might behave differently.

[Ken Burch]

7. Oh God. This is familiar sounding. I'm so people are being insensitive about your wife's health.

My own wife was guilt tripped by her kids over her health issues. Some of them got it later, some of them didn't.

In her memory, I say this:

It's not that hard a concept, people:

DON'T MAKE PEOPLE FEEL ASHAMED FOR BEING SICK! ILLNESS IS NOT A MORAL FAILING!

You're not alone. A lot of us stand with you and share your anger.

Feel free to pm me at any time if you need support.

[shari]

8. oh, Straightstory,

I so understand how you feel. I just went through 8-months of my husband having lung cancer. We knew from the beginning that it was terminal (3-months), but decided to fight to buy a few more months. Man, what a fight it was,and we won. We got a few more months. I so understand how you feel because your wife is in such bad shape and you are helpless to change it. Just treasure every moment you have with her. You'll be there for her, and that's the most important thing for you and for her. Be glad that you still have her, stand beside her, and fight the fight for whatever time you have. Later you'll treasure every memory. Please don't misunderstand, I'm not comparing Parkinsons to Lung cancer, but the fight is the same. You're trying to buy as much quality time as possible, and those who aren't involved in the everyday care really don't understand what it's all about. For 8-months I haven't gone anywhere. I couldn't leave him and he was to weak to go anywhere. I tried to do things like clip the bushes or brng in firewood, but I had to stop because he wanted to help and he was to weak to do it. He didn't like taking medicine either, and at the last he was hallucinating pretty bad. He had brain tumors, so his mind wasn't real good either, and he had to be watched every minute. With all the family around me, there really wasn't much help, until about the last week. I stayed by his side and held his hand as he passed, and watched as they took his body away. He was a wonderful, kind, hardworking man who loved and was well loved. I've had to deal with inlaws as well, and all I can say to you is please try to not let it bother you. You've got enough on your plate as it is. I've just had two days of rest since his memorial service as I write this. God, how I treasure every little memory. My point here is.....treasure every moment. Look around you. See all the people who have lost their loved ones, even their children? Consider yourself fortunate, you still have her. Let the anger go, because it will get in the way of the good time you have with her and it will soil your memories. Hang in there and fight the fight. And Straightstory, GOOD LUCK to you and your beautiful wife!

[TwilightGardener]

12. Welcome to DU, Shari, and very sorry about the loss of your husband. God bless.

[zeemike]

9. I can only offer my hope

That soon this devastating disease can be cured. Science is making great breakthroughs every day and there is hope.

[wtmusic]

10. Maybe it's time to tell this to Grandma

with a little editing, of course ;)

They know how to pull those strings, don't they? Good luck SS.

[TZ]

11. My dad has Parkinson's

Its a terrible disease. Fortunately he seems to be holding his own, but as someone who has a chronic illness herself I can tell you healthy people just DON'T understand what it means to be chronically ill
FYI, there is some VERY promising gene therapy work being done with Parkinson's that might very soon be an option for your wife...

[ProfessorGAC]

13. I Can Empathize

I have MS, and since i'm still highly functioning, folks in my family don't get why i don't want to go to family parties and come over on Christmas Eve. Geez, i'm burnt to a crisp by 8pm every night.

But, they don't get it.

They never will. Just have to keep on, keepin' on.

Best wishes to your wife.
The Professor

[Vinca]

14. I swear, sometimes it seems family members do more harm than good

without even trying. I feel for you and your wife.

[Javaman]

15. Have you tried telling her family just what you said here? nt