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Topic An uplifting thought Go to previous topic Go to next topic Go to higher level

By shakydog On 2010.11.15 22:13
I had an uplifting thought the other day, it was in response to a post from someone who was at the end of the rope. I wanted to offer a pat on the back and a few words of encouragement for the woman who was again saddled with dirty diapers and feeding problems. Just like those terrible years before the children were able to take care of themselves. Trapped in the house with a whining brat that is only capable of creating more work. No chance for dining and dancing. Going places with that thing is out of the question. That worthless husband has abandoned her to take care of all the household chores by herself, while he just sits idly by, watching TV and thinking up more ways to make her life miserable. Her life had changed so much in the past few years, all of the things that used to be done for her had suddenly become HER responsibility. And the endless mewling about HIS comfort!!! Just like when those kids were little.

But I couldn't find an uplifting thought.

By Reflection On 2010.11.16 08:43
We all have our feelings, and certain things trigger those feelings.
I don't think this is a fair or accurate response to what was a cry from the heart - no one here has talked about "worthless husband" "thinking up more ways to make her miserable." I have read vents from the heart that this is not the life we wanted, planned, hoped for, deserved, but we're stuck, and we're frustrated.
How about this for an uplifting thought? We're hanging in there, despite all the difficulties. We don't have to. But we's doing it. That is, to me, daily heroism worthy of the Medal of Honor. And we'd like some support, some recognition. And we deserve it. And we deserve to have a safe place where we can express those feelings. This place.
Interesting to note, too, that those postings as caregivers predominately women, and the loved ones with PD posting are predominately male.
Where are the men who are the caregivers of women with PD? More men get PD than women - but not that many more. Have those men fled, or do they just not post on forums? Since some of our men with PD post - that would indicate that men are willing to use forums...but are less likely to care for someone with PD. I can't remember ever reading a post here by a woman with PD, complaining that caregivers are insufficiently dedicated, upbeat, or that they shouldn't discuss certain hard realities of caring for someone with PD.
Can we de-escalate here? No one wants to make our loved ones with PD feel bad. But I do not think it's fair for our loved ones with PD who post on this forum to make the caregivers, for whom this is our only on-line outlet, to censor our postings here for fear of making our loved ones with PD feel bad. Al, Shaky Dog, I truly appreciate your posts, you add a great deal to this forum. But I know I've felt pressured,almost bullied not to post honestly and accurately about negative cognitive and behavioral issues I've dealt wth that may be medication, may be dementia by responses from those with PD when these issues come up. This forum will be impoverished, less useful if caregivers can't honestly raise thoughts and feelings, without censorship, without feeling we'll be made to feel worse than we already do.
And is it fair that that caregivers get to vent, and I'm asking you not to try to censor those vents, not to post your own vents about how the caregiver's vents have made you feel? I think it is fair. There are many forums for persons with PD. This is the only active caregiver forum that I know of. We need a safe place. I hope you'll keep posting, and am confident that you will - your perspective is welcome, and valued. But be kind.

By Emma On 2010.11.16 09:22
I agree wholeheatedly with Reflection who has spoken so eloquently for the caregivers on this forum. I would go even further and say that frankly I find the venom being spewed by PWP on this forum toward caregivers, on a board that is supposed to be for caregiver support, to be appalling.

To the caregivers, you are the unsung heros in this battle. I applaud you all and thank you sincerely for the gentleness and understanding that you have extended to me when I have felt the need to vent. You all deserve to have a place to go where you can do that venting without fear of reprisal. I thought that this was that place. Perhaps it's not. In any case, I treasure and appreciate each and everyone of you.

By karolinakitty On 2010.11.16 09:45
Don't know if this will stick but.....

Vent without fear of reprisal...good ..got that settled. how about say something positive, uplifting or encouraging without fear of reprisal too.

It's said that i am bitter because i suggest positive thinking.... i say what I feel and I too, many times have felt, oh know, i said something positive again....fear of reprisal, no, i have no fear of man, I feel saddened that so many are down and i can't help them. i guess that is my biggest problem. I feel so bad for folks when these times of anger, sadness, depression and worry hit them. Whether my expressions are wrong due to the latest psychological mumbo jumbo or not, i only aim to look at things from a "happy" viewpoint. Am i happy my guy has PD? NO..i was angry, mostly at God for bringing the man of my dreams, the man who has made my dreams come true after 46 years of life, INTO my life only having this happen to us. BUT .... if this is the way it is going to be then i am still going to have God's joy in my heart until the day I die.
So it isn't JUST the PWP who sees things in a different light...there are a few of us caregivers who see it too......

By lurkingforacure On 2010.11.16 10:08
Most caregivers are woman, that is a fact. I dont' know what the percentage is, but it's way more than men. Not to diminish male caregivers, but the facts are there.

I personally know of a few women who got dx'd with PD and their male counterparts fled. One stayed as long as the sinemet honeymoon lasted, then when meds started fluctuating....bye bye. I think that's harder than if someone just bails from the get go.

I appreciate everyone who posts here and hope none of our PWP post less or worse, leave. My husband doesn't say much about PD because he doesn't "want to complain", but if he won't talk, I can't know what is helping, making things worse, how he feels, etc. All of the posts here by PWP give that needed insight that some of us don't get much of.

We as a group have been through this divisive thing before. I hope we all realize that no one means any ill will towards anyone else here when they post. And if someone takes offense at a post, we should be mature enough to let it go and move on. Doing otherwise is like biting the hand that feeds you: if we destroy our safe haven here, we have lost a lifeline for a lot of people.

By mylove On 2010.11.16 11:01
Actually, Reflection, that's one for Shakydog, ironically enough. He's been a PD caregiver twice in his lifetime, although not for a spouse. It is interesting, though, what you are saying about the ratio of men vs women.

KK is right. We all need this place to vent, and that's a valid need for human beings. We also need to extend the courtesy of not attacking the people who are able to stay positive. It's a board for EVERYONE, not just the venters, not just the discouraged, not just the positive people, not just this one or that one or the other one. ALL of our points of view are valid. I would make one submission: vents are really good. We have to be able to get things off our chests, because if we eat too much of it, it will kill us. The danger comes in too much 'negative reinforcement', and I think that's what KK is trying to say: that bitterness has a tendency to spread. Let's get that crap off our chests so we can take another deep breath and turn around and encourage each other to go on. We all need that - not just a sympathetic listening ear, but that word of encouragement to get up in the morning and try to make the best of the next day. I thank her for being that word of encouragement for me. I sure appreciate all of you listening to me when I'm frustrated, and I thank those of you who say "C'mon...here's a hand. It's going to be all right."

Lurking, Shakydog is like your husband in that respect (doesn't say much because he doesn't want to complain). I think many men are trained to be stoic, and for them this is just one more thing they must endure. It's only recently that he's been being very open and honest about the journey, and I'm getting a lot from it, as I do from Al's posts. All of us can discuss all day long which chair to use, etc, but only the person who sits in it can tell us how it feels. And that's important too, right?

I'm with you on the last bit. Let's go back to the kindergarten mantra: take the best and leave the rest, and be nice to everybody. Oh, and take naps. :) Maybe we all need a nap and we'd wake up in a better mood!

By Pick On 2010.11.16 11:07
"Vent without fear of reprisal...good ..got that settled. how about say something positive, uplifting or encouraging without fear of reprisal too.

It's said that i am bitter because i suggest positive thinking.... i say what I feel and I too, many times have felt, oh know, i said something positive again....fear of reprisal, no, i have no fear of man, I feel saddened that so many are down and i can't help them. i guess that is my biggest problem. I feel so bad for folks when these times of anger, sadness, depression and worry hit them. Whether my expressions are wrong due to the latest psychological mumbo jumbo or not, i only aim to look at things from a "happy" viewpoint."

Wow. Karolinakitty, I can tell you are very hurt but I still think you have an obligation to be intellectually honest. As anyone can see, I have basically been saying over and over again "If it works for you that is wonderful, however it is not helpful for everyone including me..." No one, as far as I can see, ever claimed you were bitter because you suggest positive thinking. What happened is you posted on another thread that ever since I added "my 2 cents worth" that I was "spreading bitterness". I replied to your post addressing the hurtful bitterness remark after which you deleted your post. Now nobody can see what you wrote.

If this is an example of what passes for supportive discourse and "positive energy" here now...wow I just don't even know what to say. Other than goodbye and good luck everybody. I take it from Emma and Reflection's replies that the OP is being sarcastic and demeaning? Not cool.

By Hattie On 2010.11.16 11:41
Does anyone remember JocDoc and his wonderful attitude about caring all those years for his beloved wife? When I first came on the forum his posts were such a strength to me and such an example. He was always there to lift people up when they were down. We need another JocDoc!

By mylove On 2010.11.16 11:46
There you go! A wonderful example of the opposite configuration! I sure do miss JockDoc... he was a ray of light.

By Reflection On 2010.11.16 13:36
Gosh, seems my attempt to de-escalate hasn't worked yet.

To those on this forum with PD: when caregivers post about stuff we're going through that may be distressing to you - cognitive changes, caregiving burdens - it's about us, it's not about you. We're saying we're affected by this stuff - not that this stuff applies to you. Try for some empathy. I, for one, would appreciate it if you didn't write posts invalidating these concerns. We wouldn't be writing about these concerns if they weren't real, weren't difficult for us to deal with, if we didn't need the knowledge and suppeort of other forum members.

We are painfully aware that these issues impact our loved ones as well - we would not be on this forum if we didn't care about our loved ones. But we need to be able to express our concerns, our feelings openly, honestly, without fear of being attacked as insufficiently saintly, or making a big deal out of the cognitive/behavior changes that, speaking for myself here, have made my life, the life of my kids, horribly difficult. I almost censored out that "horribly difficult" but since my point here is that this forum works best if we can be honest, I'm leaving it in.

Nor am I going to censor it because it is insufficiently upbeat. I have posted here infrequently, and typically have provided information from the neurological literature about PD, not personal information. You do not know what I have been through, and I am not going to share that that now, or, probably ever. My husband has been paranoid, abusive, unfaithful for years, he's squandered a great deal of money on his secret life, he hasn't been much of a father. I could add quite a long list of what we euphemistically call "difficult behaviors" but if he ever comes across this forum (not likely, since he does not give a damn about the impact of these "difficult behaviors" on his family - his only concern is to ensure he can keep doing them) - I don't want him to be able to recognize these posts as coming from his wife.

So why haven't I fled this awful situation? I have written here before that "the person he was would be appalled at the person he has become." Some portion of the awful behaviors is from PD, some portion of it is from PD medications, some portion is that, maybe, he never was the guy I thought he was - it's been a very long time since he's been that guy. I just don't know.

What I do know is that there is no one else to give him the help and support he needs. His siblings are in even more denial than he is. Our kids have been great, but are so digusted by his behavior, they are very conflicted about having any relation with him at all - they have distanced themselves from sheer self-preservation. So have I - though distance is relative. The married woman he's had an affair with since - get this! -even before he was diagnosed with PD ten years ago! - sure doesn't want to deal with any of the practical challenges PD presents, with the possible exception of erectile dysfunction. This woman has not qualms about taking advantage of his cognitive impairments to extract money from him, or to try to alienate him from our kids so he'll give money to her and her kids - even though she has more money than we do! I'm not a masochist, I don't want to be in this situation, but if I'm not dealing as best I can, it's on the kids, and they have been through enough. There is no roadmap for dealing with this situation, so all I can do is my imperfect best.

To those of you with better situations, I'm glad for you and your mate, really I am. But don't judge me, or anyone else on this forum whose situation you do not know, for being insufficiently upbeat. It is insulting, even if you do not intend it to be. With pluck and luck, we'll get through this? I think not.

Let's all try to accept each other, from wherever we're each coming from, share information and support, without censoring, without judging. If you don't like a post - including this one - ignore it.

By karolinakitty On 2010.11.16 16:21
ps... i personally did not delete my former comments ..... neither did the powers that be here..... that's all i will say......

By Pick On 2010.11.16 17:05
"ps... i personally did not delete my former comments ..... neither did the powers that be here..... that's all i will say...... "

Whatever it is still you who is misrepresenting what happened and trying to say that you were accused of being bitter and oh boo hoo when in fact it was you saying hurtful things about me that were deleted. Also, for the record JockDoc did post vents but that was back in the day before mylove joined the forum. Everyone just let him vent without judgment and without accusing him of "spreading bitterness" (gah! how selfish can you be???). Thankfully. He endured so much.

I hesitate to speak for anybody much less JockDoc but I feel extremely confident stating that he would have been appalled by shakydog's abusive post.

By shakydog On 2010.11.16 22:50
I don't post often. I don't have the time or energy to do more than make it through my long day. I have often thought that a "vent" was a call for a small reassurance that life is worth living. But how can the rest of us know when a "vent" is vitriol and when it is a cry for help? I can't tell. I have seen posts that got replies of assurance that were violently rebuffed as meddling. We try to be civil. We try to understand and help. That's all. If a place to "vent" is needed, this is it. But let the rest of us know that there is no response needed beyond acknowledgement of the "vent".

I meant no abuse, this post was my "vent" at things I have no control over and a things I might have said but didn't. Our lives are hard enough without picking fights with those few who offer to help.

Hang in there

By Pick On 2010.11.16 23:54
I tried to post this before but it didn't post for some reason. Sorry if I misunderstood your OP. When I first read it I thought "Wow he sounds really frustrated." Then I read the replies and thought "Oh I guess I didn't get it." Sorry you are having a tough time. It's so hard to watch our loved ones struggle.


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