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Topic how do you accept it? Go to previous topic Go to next topic Go to higher level

By Santosha On 2010.05.04 22:45
my husband has parkinsons disease and watching him slowly deteroriate is hell. i feel like running away. does anyone else feel like this?

By Newcaregiver On 2010.05.05 08:15
Santosha: yes! I really understand that. I suspect we all do feel that way at one time or another. I remember going to a dinner with my PD'er and two other couples with PD spouses. They were nice people and I had a nice time, but at one point as I looked across at everyone I had this overwhelming need to get up and run away! It just came over me so strongly. I know that it was a normal reaction, but it was a strange feeling!

It is just so hard to be a part of this - isn't it? If we feel this way, think of how are husband's feel! Take care and stay on the forum!

By mezmo On 2010.05.05 09:24
you are not alone. my mom has PD. sometimes i feel like i can't take another day, and i am not her primary care giver. my sister is. they live with me. it can be a struggle to stay positive and i do my best. i cherish the times she feels like her old self and just make her comfortable when she doesnt. PD is a strange disease. my husband tells me i can only do what i can.

hang in there and know you are not alone.

By Emma On 2010.05.05 11:30
I think we have all felt that way at one time or another. It's hard to watch the changes happening in the person we love and it's hard to have our whole reality turned upside down. We all, patients and caregivers, go through the stages of grief I think, because we are grieving for our spouse or parent, for ourselves for the life and future we thought we had. Then sometimes, as hubb said on another post, the "old guy" shows up and we feel better for a while. But this hard and it's normal to feel like you do. We're all on a roller coaster ride that we didn't even buy a ticket for. Hang in there, we're all here for you.

By Santosha On 2010.05.05 15:57
Thanks everyone!
I especially resonate with what Emma said-that its grief were going through. I do feel sad all the time.
I am glad you are all here and that you didnt find what i wrote offensive.

By hapidawg On 2010.05.05 20:12
Santosha - The grief is overwhelming. I do know how you feel. My husband was diagnosed 7 years ago. I have gone through denial, terrible depression, worse than terrible depression and, yes, it would be nice if I could run away. But I won't. I feel totally out of control mentally. I wonder if I feel so rotten because I'm physically ill or is it "just" depression. It IS a terrible disease. No one can really be ready for its demands.

By mylove On 2010.05.05 21:50
Hapidawg, I (we) have missed you and wondered how you are.

We have had a terribly rough couple of weeks here, and I hear and feel what you all are saying. Santosha, I understand. So many times I have thought about posting about things, but I don't because I've been bit a few times and have gotten very shy about it. I was one of the few that went into this with eyes wide open, and I've caught a LOT of grief about it. The truth is that I am so very, very happy with where we are and what we have, despite the 'fly in the ointment'. We normally deal with things very well.

But you know what? I'm human too. When it's been nothing but stress, lack of sleep, medical issues and challenges day after day after day after day (plus all the normal work, kids and home chaos) I too get tired and distraught. I don't have any friends close enough to talk to about it, my extended family has their own problems, and I feel like I can't come here because my problems are so small and insignificant in the face of what most of you are dealing with (and I just can't face one more "well, you ASKED for it" when I feel so low).

I had to go off to work the other day and leave my husband at home alone after we'd spent the night in the emergency room, not knowing if he would be okay and hating the thought of leaving someone so sick alone. Then work was crazy and the kids all needed different things and there were errands to run that he couldn't help me with because he was sick, and I was on my way home and someone cut me off in traffic, nearly causing a wreck. I just felt like pulling over and crying. It was like the straw that broke the camel's back. I thought at that moment that I wanted to call someone - anyone - just to vent to, but there wasn't anyone. My husband is my best friend. I never regretted the lack of close female friends before now, but I do now. I think it's me that has to change, and I think it had better be soon, because only the people with strong support systems make it. None of us can be an island.

This post got long and what I mean to say is this: thanks for being here, all of you, and we need to support each other, because for some of us, this is all we've got.

By lurkingforacure On 2010.05.06 05:52

I would not worry about not having a group of close girlfriends. In my experience, the ones I thought I had bailed on me soon after dx....the few that remain, I really can't talk about this with them because they really don't want to hear about it. They SAY they will help and listen, but when you really need someone and it's not convenient for them to step up....

There have been a lot of posts on here about losing friends, peers, colleagues, whatever you want to call them, once PD comes into the picture. It is rare for a friend to stand by you throughout this, I am finding, so you're right, thank heavens for this forum. Too bad we can't get together physically to hug each other and cry together.

By karolinakitty On 2010.05.06 08:03
I live in analogies!!!!
Pd reminds me of a road trip .....
You start out a little aprehensive, if it's a place you've never been before. You learn all you can about the road ahead. As you travel down the road, you can have clear sailing, no traffic flat roads beautiful scenery, and then, oops accident and your backed up for hours. After you get through that mess you are relieved that you can go smooth sailing again, then you hit the mountains (especially on interstate 40 through TN and NC, Yikes!!! Construction, road hazards, trucks flyin low, hairpin bends and curves, thinking your gonna fall off the edge, i think you get it .......

Then things smooth out again for awhile ... then another accident or whatever gets in your way or slows you down, or over stresses you.

While I too have lived this PD life so far in stages, right now i am smooth sailing. I had a rough time 6 months ago when i did nothing but cry everyday cause i thought he was progressing so rapidly, and then it all leveled off.... Docs still say 3-5 years left for mine but again we refuse to give into that.Changing jobs, fighting with disability, being stressed on how were we to pay bills, were our mountains plus a few more things for awhile. Now those stressors are gone. Having a doctor and actually not paying full price for visits and meds is a great thing. Although the pcp has now added Emphysema or COPD, we knew he had something like that for years also, i can get drugs for like nothing with our part d plan. I got an inhaler and diuretic for $9 the other day. Do you know how that feels after paying over $600 a month for just the PD meds. I was able to find a company that actually covers his Requip XL after numerous calls, and again we are leveled.
I know ahead, somewhere down the road more accidents and mountains are there but for now i'm coasting and enjoying every minute.
As so many others have stated, we lost friends along the way. My best friend still lives in KY and i miss her alot but we are still in touch, just too many miles apart.
Not to pat ourselves on the back(the caregivers) but we do all these things alone for the most part , we are of strong will and nature, i believe. However we are human, humans have emotions and feelings, that's what sets us apart from the animal world. We want to run, at times, we want to scream at times. Sometimes i get so frustrated as to : If you know you can't bend over to pick things up, WHY do you have to throw things on the floor????????? Even though i know he doesn't literally throw them, having to bend down and pick up.... i get enough excercise, thank you very much........
We are all in this together and i too am so thankful that we can all share our ups and downs.....

a special note to mylove...... There are stages of caregiving, just like there are stages of PD ........ Stress is a big factor in all stages, just some more than others. I don't know how I myself would handle things if i had children at home to worry about too. My youngest is now, this month coming home from Iraq, but in a few months will be heading to Afghanistan, but this is a minor stress compared to having young ones who need you right then and there. Hang in there with us and just put it out on "paper" here ... we love you and shakydog and always want to hear how you are, good and bad .... Those who are dealing with later stages in this have the wisdom for us to handle it .........

By caregivermary On 2010.05.06 14:59
Yes, I believe most of us do feel like running away. In the end, we are here continuing to care for our PDers. It's ok to feel this way. We are all humans and are not perfect nor do we have the luxury of being in denial. Just remember there are good times and bad times. Try to enjoy the good ones because they do pass quickly.

By eusnodlor On 2010.06.26 11:39
I feel like my life is being sucked out of me and like you I want to run away. We have been married 60 years and watching him go down this road is so very painful. You are not alone in how you feel. Do not think my grown children really understand how hard things are for me and also him. We are unable to socialize anymore and the TV is our only entertainment. He sits and reads most all day, nless he falls asleep in his chair. He doesn't have any fight left in him.

Thank heaven I found this site to read and express some of my feelings. I pray every day for more patience since that is not my strong point.

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