For those who care for someone with Parkinson's disease
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By mrsmop On 2010.11.13 19:39
Is this site for PWP as well as for caregivers? The title suggests it is specifically for caregivers, who can have their say, vent, and perhaps find support. I think we all know that PD becomes a family illness and does not just belong to the PWP. Caregivers have unique issues, and also have their own lives to consider and protect.


By Pick On 2010.11.13 20:56
Hi mrsmop,

The title is very misleading. I came here a few years ago hoping to find a safe place where I could talk about being hit, kicked, choked, sexually assaulted and otherwise by my PWP. I mostly got lectured to about how difficult it is to have Parkinson's and how horrible I was to complain. Caregiving is so very very difficult and yet in all the doctor's appointments (often 2-3 per week) I've taken my dad to in the past 6 years only ONE doctor has ever turned to me and asked "and how are YOU doing?"

Some of the PWP and their loved ones who post here act like we caregivers are idiots, that we don't "get it", that we need to be reminded how difficult it is to have Parkinson's. To those people I say please, you have no idea how inundated we are with pamphlets, books, websites and well-meaning neurologists. Trust me when I say we are up at 2, 3 and 4 AM Googling away. We are constantly watching you....trying to see things from your perspective...what makes you freeze, what breaks your freezes, when you are "off", when you are "on", what type of chair works best for you, what type of adult diaper is best for which time of day, what type of cup, fork, spoon, knife, plate, napkin will help you remain a little more independent, etc., etc., etc. I wish someone would pay 1/8 as much attention to me!

I'd enumerate all the sacrifices I've made....all the untreated health problems I have now (obesity, high blood pressure, high cholesterol to name a few...also no health insurance) that I didn't have before I became his caregiver but I know it would only fall on deaf and defensive ears here. All I can say is hang in there and keep searching elsewhere for supportive people. I still lurk here once every few months but I finally found some real support (not on the internet). Caregivers are the invisible patients. My prayers are with you.


By karolinakitty On 2010.11.13 21:42

By Pick On 2010.11.13 22:16
hey karolinakitty if it works for you that's great. I'm just saying many of us don't need to seek out places to hear patients' views. We already hear "how THEY must feel, how they see us and how they see themselves" 25 hours/day. Relatively speaking, there is so much attention paid to PWP, and so little paid to caregivers. It's just a shame that that has to be true here as well. This disparity should concern everyone (PWPs, doctors, families), not just the caregivers, but it doesn' least I find it doesn't here. Because who will take care of the PWP if something happens to the caregiver?

By TiredTexan On 2010.11.13 22:34
mrsmop, Thanks for your post. I have thought the same thing for some time and it probably caused me to delay "joining" the discussion. I want some practical advice, not just a reminder of the problems my PD spouse has (I know them all too well!).
I am the 80 year old wife married for 60 years to a lifelong, very loved. successful pastor...his first symptom was severe voice problems and it took a couple of years to find the reason. Then close behind it came indications of dementia. Devastating! After almost 8 yeas he has no tremors and has a steady gait. He has less obvious signs of PD however. There are times when I feel "smothered" and I wonder where to "draw the line". Recently we moved to an Independent Living Facility - where there are people around all the time, I don't have to cook or do heavy house cleaning, etc. and that has eased life for me to some extent.
I understand a lot of Pick's feelings and I let my PDP know when I am upset with his behavior. I don't tolerate "pity parties"! We have had a "charmed" life and there are so many things to be grateful for - God is still in control! Now "WE" have Parkinsons and he is not the only one affected. I could "vent" a whole lot more = we all share common ground there!

By mrsmop On 2010.11.14 01:04
Pick....Appreciate your support and understanding. All of my friends and family seem to be in a "better place" than me. I do envy them. I don't believe that a person who hasn't cared for a PWP can possibly understand what we go through. Aside from the current day-to-day work we do, I find little to look forward to. This is a chronic disease with steady deterioration. People give lip service when they ask "how are you doing" but they really don't want to know if things are bad. And what can they do about it anyway? I try to keep busy with activities outside of the house when he has his attendant/companion. Truthfully, I get neither pleasure nor satisfaction from being a caregiver. I guess I fit the definition of being a dutiful wife. Thanks again.


By Emma On 2010.11.14 05:32
I have mixed feelings about this. My perception has always been that this is a forum for caregiver information and support. That can come from anyone, other caregivers or PWP (who often have good information to share). To me there is, however, a difference between posts seeking information and posts where caregivers are venting their frustrations, anger, hopelessness ... their feelings. At those times I don't think that the poster needs to once again be reminded of the PWP's perspective, they need to just be able to vent. Feelings are neither right nor wrong, they are feelings, not facts. Sometimes they're rational, sometimes not. It doesn't matter. I was always taught to respect the feelings of others, that the listeners "job" was to offer support or validation and if you couldn't do that to just listen. Once the listener says "yes, but " what they have done in effect is to say "yes, I understand your feelings, but they're wrong", thus invalidating the "validation" they just gave. So in that sense I agree that having to once again be reminded of the PWP's perspective gets tiresome and just makes the person who is venting feel guilty on top of everything else. We,as caregivers, need to have a place where it can be about us for once and our voices can be heard without judgement.

There are so many good people on this board, caregivers and PWP. I learn a lot from everyone even, probably especially, those who have a different perspective. I have often posted my "negative" feelings here, and I have a lot of them. This is my safe haven. In spite of that, in spite of the fact that I do get angry, resentful, exhausted, depressed and don't feel particularly blessed to be a caregiver, I DO understand my husbands perspective and don't need to be reminded of it constantly. I also know that like me he wasn't a saint before he got Parkinson's and he's not one now (not everything can be attributed to Parkinson's). Even so I am his biggest advocate. I do the best I can for him. That's all anyone can ask.

By Pearly4 On 2010.11.14 06:00
I too lurk more than occasionally and infrequently post -- I lost my mother to PD 18 months ago. As a past caregiver I can say I frequently had the same feelings as Pick and MrsMop but haven't had the courage they have to post the same. There are times when I had asked for input from those afflicted with this disease but many other times when I've only wanted to know that I was not alone in the feelings that caregiving left me with. There were times when I hated my mother, times when I needed to be reminded that I hated the disease, not my mother, but always I needed to feel that others felt the same and understood completely. As a caregiver, the reminders that "we too suffer" from the PDer, not the caregiver, seemed to imply my feelings were wrong. We know you suffer, we watch you suffer, but obviously we can't share our feelings with our own PDer and its the sharing with other caregivers and the understanding and support we recieve that allows us to go on with our own battles against this disease. Please don't minimize our pain!

By Emma On 2010.11.14 07:16
I want to add one last thought to my post and I'm probably going to take a lot of flack for it but I don't care.

I have noticed that caregivers (myself included) frequently add a disclaimer to our "rants" that says "I know that my spouse, parent, whomever, suffers more from this disease than I do". Frankly I'm not sure that's true. I don't think that the stress, loss, pain and grief of living with a chronic progressive disease whether as a patient or caregiver can be quantified. We all suffer from it but we suffer differently. Who is to say that one persons suffering is more than anothers? We can never know that. I try to be sensitive to my husbands experience and perspective but I have an experience and perspective that is just as valid and is never heard except on this forum. As Pearly said, we can't share those feelings with our PWP. In my opinion this board needs first and foremost to be about us, whether for education or venting, because there sure isn't much in our lives that is.

Bless you all and thank you all for sharing.

By caregivermary On 2010.11.14 10:20
first: Hellooooo Pick! so happy to see you posting here. I have missed your responses-sincerely!

I also agree with msmop & pick. I'm in a place right now with my husb that I have to be able to tell you guys what I am going through and I don't feel comfortable doing it. Annwood, told me more than once not to hold back but..... I too have found other sources to spill my gut.

Al, I sincerely respect your help on questions regarding symptoms. I find that communication to be so valuable. However, when we have to vent here, we have to vent to stay sane and survive. This is a caregiver forum and patients do have valuable sites to communicate with each other. I view these sites but do not offer advice.

We have been around this corner on this topic a few times and I hope this time we can agree to give voice to the caregivers who do not have other outlets to let go.

By lurkingforacure On 2010.11.14 19:05
I'm in the camp of feeling like we need to be able to say whatever we need, without any fears at all. I think as someone once posted here long ago, if you don't like a thread/post, don't read it, and move on. Works for me. Everyone here is mature enough to know the enormous load we carry every day and the common background we share. We can all share what we need to here in order to survive. Doing so in no way minimizes anyone else's burden, I don' think, and in fact, it helps us realize we are not alone, that others are walking the same path and understand what we are going through. This is invaluable when it is 3am and you are bawling your eyes out, again. So I think everyone should vent and rant and share, without restraint, it's good for you and might just help someone else.

Oh, I meant to also say hello Pick, I too have missed your posts.

By rita-bob On 2010.11.14 20:47
Thank you for bringing up this subject! This is the only place I feel like I can get some things off my mind. At times I feel like I am going crazy. I so much would like someone to care about how I feel through all of this. I also get angry, resentful, exhausted, depressed and don't feel particularly blessed to be a caregiver.
I find if I get out of bed a little before I have to get him up, and spend some quiet time asking the Lord to give me the strength to get through just for today, it helps. I know I cannot do this all by myself! I also at times put my husband into bed and then spend some quiet time to myself just to unwind so I can get to sleep.
You are right when you say that the caregiver suffers also. Sometimes I think we suffer more!
I appreciate all of your input. It helps to know that you all are there when I need it.
You all will be in my Prayers. God Bless!

By parkinit On 2010.11.14 23:32
I have to admit, I thought this site was for caregiver's only as well and was surprised when PDers from time to time would post. We need a place to talk, share, without our PDers watching over us or chastising us for having the feelings we do from time to time. Perhaps it keeps us from venting at them when we have some place else to go, so please don't every chastise us or make us feel less because we, too, are robbed by this disease.

By Pick On 2010.11.15 11:09
It's nice to "see old faces" too and to caregivermary, I'm so sorry for the challenge you are facing but so happy you found a safe place to kind of deal with it.

It's been a really rough year for us....we almost lost dad last spring thanks to a very bad medication error (we now have a new neuro). He was in hospital & rehab for 6 weeks. In some ways, though, its been better because I finally found the support I needed...people willing to listen without judgment, without telling me how I SHOULD feel, without trying to impose their values on mine. This has made me a better caregiver and a healthier person.

I want to thank everyone for their honesty and find it very refreshing and helpful. I know how hard it is to admit we are only human....imagine that! I encourage all of you to never give up seeking the support you deserve.

As an aside, here is some gallows humor about "relative suffering" that speaks to Emma's post. A couple of weeks ago my dad sexually assaulted one of his paid was pretty awful and she was traumatized, we were all devastated and crying for days. Except for my dad, of course, who doesn't remember a thing. As I was telling a friend about the ordeal, I mentioned that the neuro prescribed Ativan for Dad to which my friend replied "F that! How come HE gets to have Ativan? YOU'RE the one who needs it!"

By TiredTexan On 2010.11.15 22:03
Pick, I hear you about everyone being concerned for your PDP - and seldom for you. Once in a while someone will ask how I am doing, or tell me to take care of myself! Often their only concern is my PD spouse with comments like "poor guy" or "it must be awful for him". I don't discount their concern for him, but I sense so little for me. Selfish? Maybe!

By flagk On 2010.12.09 22:05
Amen to all
I have been on emotional rollarcoster since we wer "officially told it was Parkinsons that my hubby had. I have read and researched and read some more. I have tried to be patient and kind -- the kids say poor dad your being too tough on him -- He says he doesn't see any good from the exercises -- doesn't want the meds and I just wonder how bad it will get how fast and what other joys are in store. A good cry would really help But I just can't seem to let it out -- When the dam bursts it should be a dozy.
We are just in the begining and allready I wonder about how much I can do and stand -- Only God knows what is in store for us.
Do you discuss with the PDer at what point you will no longer be able to cope and care form them now or later. how do you find a decent neuro and PT person? Who holds me when I'm tired and frustrated?
The blessing of this site is that it so helps to know that others have been down this road and so many of you are so brave and loving -- You are amazing even when you are complaining!

By Pearly4 On 2010.12.10 11:52
Flagk -- we found our neuro through a Parkinson's support group -- I can't speak for others. You might find some a little slow to answer giving the location of your post - this one brought up so many issues for so many people, they might be reluctant to read it again! If you don't get much response, please feel free to start your own post with the same questions.

Some people recommend taking things slowly at first -- the information you get about the disease and its course can be a little overwhelming if you read too much too soon. You need to remember (as does your husband) that everyone progresses at their own speed. My mother had a diagnosis for 8+ years, but had it for a few years before that. She died in her sleep, but even at the end was fairly mobile and independent physically -- I think it was a blessing that she died before things got really bad.

We told her from the beginning that she was welcome in our home and we would care for her until either she or were being harmed by being in the home, either physically or mentally. I was straightforward with her and didn't/wouldn't promise she would never be in a nursing home - I couldn't do that. I think even with my husband I would tell him the same thing -- "I'll take care of you as long as I can, but I may not be able to do it all for the length of your illness." I would expect the same of him. As you say, only God knows, and you may find you have more strength and are able to do more than you think and that he may not be as bad or suffer as much as you (and he) are afraid he will. This disease always wins - all you can do is play the best game you're able to.

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