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sarakay

Who your real friends are

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My husband has had PD for nearly five years. Since I am a good listener I seem to attract people who want to vent and vent. I have noticed that some of them rarely ask me what I am going through as a caregiver 24/7.  As DH's PD progresses and it gets to be more and more difficulty to feel like I have a husband but rather have a person who I am living with it gets more difficult to have the patience to listen to all their problems.

Recentlu I have hung up on one and told another I had to help put my husband to bed so I could hang up. A third one is going through a divorce and she tells me every little detail about her issues.I have not called her and pray she doesn't call me!

Never does anyone sk how I am doing. It's always about my husband. How do others cope with this? . I try not to be around people who talk and talk and talk in a social setting. I'd much rather be home in peace and quiet.

Am I losing it?

 

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Perhaps it's because you always seem so strong around your friends and you probably are in better shape mentally than any of them so they go to you for advice.  You can start talking about the troubles you are having even though they don't ask.  Once they hear what you go through then they may put on their helper's hat and start listening and be there for you. True friends would.

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I agree with miracleseeker. If you don't reach out for help, you won't get it. Your friends can't possibly imagine what you are going through. Most of them may not even know what PD is, for that matter. Remember, that many of us with PD, even YOPD, are often treated with disbelief "Are you really sick?Wow, you look great", just because our symptoms are not always visible. For most people -including some doctors, LOL- PD is nothing but a tremor...

 

As for your friend who is getting a divorce and wants to tell you everything about it, I want to tell you just this...please listen to her.... Chances are she is in real pain...

 

As i'm going through a very painful divorce at this time, i must tell you this is the hardest and most trying and stressful experience thus far in my life. 10 times worse than my PD !!!!

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Indeed Miracle Seeker. This seems to be the case. Iv'e been thinking a lot about this and have come to the realization that it is very very difficult for me to talk about myself and what i am going through.!!!!! i can talk no end about my DH but not my feelings or sorrows. a lot has to do with feeling ashamed that i am not handeling this better and feeling very vulnerable. worrying about what lies ahead and feeling guilty that i get frustrated and angry at him. how long will i have to do this and as his condition worsens how will we manage.

who could really understand what it's like unless they are in a similar situation.

hugs to you.

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OH, my dear Christie

I am so very sorry that you are trying to deal with this and your PD at the same time. I cannot even imagine what you are going through. My friend is going through her second divorce!  She has migraines, fybromyalgia, pains in her stomach, knee and she is clinically depressed. Her husband has Aspergers. Talk about troubles.

i will try to be more compassionate but after 30 minutes of non-stop poor me every time i talk to her it does wear me out!!!!

i need to be more honest and tell her that i can't talk right now as i don't have the fortitiude to listen, don't I?  This is so hard! 

I'm seeing my counselor today and my nurse practictioner tomorrow who can prescribe meds. I have been seeing them for several months. i will consult them about taking more antidepressants as i to am clinically depressed especially this time of year. also ask my counselor what she might suggest about frtiends dumping thier woes on me. how i could handle this better.

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Sara Kay, I can feel your pain.  My brother has had Parkinson's for nine years and two years ago I moved in with him after loosing my job.  I know take care of him as my job.  Through out my life, I have found some people are listeners and some are talkers.  You apparently have been blessed with the gift of listening to people as they trust you.  I know that at times, I feel I should just open a office with a couch and start charging for my time.  I have found different outlets to vent my frustrations with my circumstances.  I have a couple of friends who I know I can vent to and that helps.  Usually I let them know I just want to vent when we get together.  I also vent to God.  Although he knows what I'm going through, it still feels good to say it sometimes.  My brother is also in stage four of dementia.  That has added another level to my frustration.  I also think this is a great forum for those of us sharing that we are not the only ones dealing with these sames issues with our love ones.  

 

I've taken to going to a near by club to work out.  Exercise seems to help me, swimming etc., to say nothing about being able to get away for a couple of hours.  The other thing that works for me is I keeping telling myself, one day at a time.  Sometimes, one hour at a time.  

 

When things are really bad, talk to the group.  You might also check in your area for a Parkinson's Support group.    

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Sara Kay,

Forgive me for not remembering (I can't seem to find it in the threads) but are you not the lady who started a support group?  If you are you have my undying respect.  There are no support groups where I live; the closest is about 70 miles away.  I thought I was Losing It until I found this site.  All my well meaning friends really do not want to hear what I am going through;  indeed their offers for help are always vague and never concrete.  Even here the Caregivers frequently have to suffer through criticisms from some of the PWP's...that is the reason I rarely post any more.  But we caregivers need support as much as they do. 

 

But on the positive side I learn something new every time I come here..  It helps so much in telling which symptoms my dh is experiencing are normal and get ideas all the time about what to do.  Your best resource are PD caregivers you meet on this site or at a support group.  Only they know the flip side of the coin. Caregivers have a tendency to retreat from friends and society...we are overwhelmed and have little time so it is understandable.  I had done this for so long that I was becoming truly depressed.  So I went back out there, re-contacted my book club friends for instance and have really enjoyed the occasional outing that is not about PD. 

 

But I think you have to balance your time and so not give all of your time and energy to people who are draining you.  PD Caregivers are very special people in my experience and will have empathy, advice and endless patience. They also like to talk about things other than PD!!  Try to make some close friends with them.  Then you will not only have a great resource but you will not find yourself so isolated.  Best of luck to you!!

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thankks so much for the lovely feedback. Yes! I am the lady who started a PD support group. I started it for myself and my husband more than a year ago. It has developed into very close friendship amoung 5 couples each of which has a partner with PD. All of us meet once a month at our house and then the caregivers meet once a month at our house also. We have met 3 times now in addition for potluck dinners where we have gotten to know each other better. We always have a round the table question for everyone including the PD folks who have a difficult time communicating because of throat muscle issues. 

My husband is the most quiet of all. He never talks in a group any more. 

I have arranged to have people come here at least 3 days a week to be with him including a PT person who we pay, a graduate student who volunteers her time to visit with him and take him for a walk, my brother-in-law who comes to play a dice game with him and then we go to a Dancing for Parkinson's group once a week.

This has all been so good for him.

I see a counselor every 3 weeks and she helps me figure out how I can cope with my caregiving role and keep my health and sanity. I am on antidepressants and that helps. i iunderstand exactly what it is to want to isolate because caregiving takes so much emotional energy. I find the need not to be with people who have no idea what it's like to be in this role. Life is certainly a balance between serving and taking time for one's own needs.

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OH, my dear Christie

I am so very sorry that you are trying to deal with this and your PD at the same time. I cannot even imagine what you are going through. My friend is going through her second divorce!  She has migraines, fybromyalgia, pains in her stomach, knee and she is clinically depressed. Her husband has Aspergers. Talk about troubles.

i will try to be more compassionate but after 30 minutes of non-stop poor me every time i talk to her it does wear me out!!!!

i need to be more honest and tell her that i can't talk right now as i don't have the fortitiude to listen, don't I?  This is so hard!

Thank you too, Sara...

 

Truth is my husband and partner of 15 years served me a full-plate of  I-don't-love-you-anymore- vows, spiced with an extramarital affair, unspeakable lies and abandonment for desert...but who's complaining? LOL!!

 

Second divorce? God...I barely survived the first one...One more reason to never -EVER not EVER- remarry again....

 

Sara, i think that the reason you can't listen to your friend right now, is because she is being selfish and deaf to your own needs, worries and problems? would you feel the same if she was a better listener?

 

A dear friend of mine is going through a rough time too, as her father was recently diagnosed with terminal colon cancer. She is calling me every day, and we both share our grief. I listen to her and she listens to me. Sometimes she cries, sometimes i cry. For some strange reason we never cry at the same time ! LOL!!

 

Understanding, friendship, support, venting and listening, should go both ways....

Edited by christie

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Probably the best advice I can give you is to find a good therapist, one who understands issues with movement disorders.  It's very difficult to be your DH's caregiver and wife; it totally changes the dynamics of your relationship. A good therapist can help you cope with this issue.   For me, it helps when the caregiver helps my DH with showering, getting dressed, etc.   I have less stress and frustration and we can have some semblance of our former relationship together.  

 

I also have 3 very good friends whom I can call whenever I need to vent. Once you've explained to them about PD, I'm sure they'll be a great support to you.   Zoloft or Xanax or something like those will help, too! 

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Thank you too, Sara...

 

Truth is my husband and partner of 15 years served me a full-plate of  I-don't-love-you-anymore- vows, spiced with an extramarital affair, unspeakable lies and abandonment for desert...but who's complaining? LOL!!

 

Second divorce? God...I barely survived the first one...One more reason to never -EVER not EVER- remarry again....

 

Sara, i think that the reason you can't listen to your friend right now, is because she is being selfish and deaf to your own needs, worries and problems? would you feel the same if she was a better listener?

 

A dear friend of mine is going through a rough time too, as her father was recently diagnosed with terminal colon cancer. She is calling me every day, and we both share our grief. I listen to her and she listens to me. Sometimes she cries, sometimes i cry. For some strange reason we never cry at the same time ! LOL!!

 

Understanding, friendship, support, venting and listening, should go both ways....

hi, so sorry that your husband dumped you. Were you diagnosed with PD then? My friend does let me share my issues to. Just now she is reeling from the meeting with her husband, lawyers and mediatort. he is not willing to give her any support and wants her out of the house in 2 months. she has no money.

I agree that friendship should be like that give and take. it is very hard but i did back away from two friendships that were all one sided. i don't have the emotional energy to listen to all the rantings and raings espeially when nothing seems to change in their lives. its all venting. my dh is such a good listener. he agrees with most decisions that i make.

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Probably the best advice I can give you is to find a good therapist, one who understands issues with movement disorders.  It's very difficult to be your DH's caregiver and wife; it totally changes the dynamics of your relationship. A good therapist can help you cope with this issue.   For me, it helps when the caregiver helps my DH with showering, getting dressed, etc.   I have less stress and frustration and we can have some semblance of our former relationship together.  

 

I also have 3 very good friends whom I can call whenever I need to vent. Once you've explained to them about PD, I'm sure they'll be a great support to you.   Zoloft or Xanax or something like those will help, too! 

hi lindaz,

yes i am seeing a therapist and she is helping me take better care of me. i'm on depression meds. yes. i no longer feel that i have a husband but an adult child who is dependent on me to do allmost everything. he can no longer drive so that is a big big difference. i have no help with him as he is still able to shower, dress eat etc. by himself. his cognition is getting worse. it's very difficul to have a conversation with him. he sits 90% of the time in the living room. 

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hi, so sorry that your husband dumped you. Were you diagnosed with PD then? My friend does let me share my issues to. Just now she is reeling from the meeting with her husband, lawyers and mediatort. he is not willing to give her any support and wants her out of the house in 2 months. she has no money.

I agree that friendship should be like that give and take. it is very hard but i did back away from two friendships that were all one sided. i don't have the emotional energy to listen to all the rantings and raings espeially when nothing seems to change in their lives. its all venting. my dh is such a good listener. he agrees with most decisions that i make.

I was diagnosed with PD 4 years ago. I'm still relatively early in the disease. No dyskinesias, no motor fluctuations. My disease hardly shows when i'm properly medicated. I never neglected my husband and his needs. I wasn't self-absorbed by my problems. I was his wife, his friend, his listener, his doctor.

 

Still, I  know that he got scared of our future together. The caregiver's role was, obviously, not his "thing"! I'm always amazed at some people who think they can predict anybody's future, including their own.

 

Long story short he "dumped" me, yes. Though, technically, I was the one who  kicked him out of the house. And yes, I believe that my diagnosis played a major role in his decision.

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Christie...

 

My heart aches for you...we get so caught up in exchanging PD things on the forum we forget that each of us is battling the same challenges people without PD face...what a survivor you are.

 

Hang in there...you are such a valuable resource and a GOOOD person....sending you good vibes.

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Dear Christie,

 

I've been through abandonment and divorce since diagnosis as well. It's not what I would have chosen or predicted. I have, after two years since my husband admitted he no longer had any interest in me, adjusted and accepted another new reality. I trust you will find peace with it all in time. My heart goes out to you.

 

Dianne

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hi Dianne and Christie,

How awful for both of you to have a partner who wasn't "there" for you when you most needed them to be. my dh is my best friend. we have been married for 42 years. i suffered from depression and an eating disorder for many of those years until i finally got on antidepressants and got into a 12 step program. 15 years ago i had weight loss surgery after i topped out at 285 pounds. my dh was there for me no matter how obsessed i was with food and other concerns in my life. he was to best.

i was very very lucky to have such a patient partner and helper.i lost 115 pounds. went from a size 26 to a 10.

so now it's my turn to help him and he is so appreciative of everything i do. he is slowly losing everything including his cognition. we don't sleep together any more because he snores very loudly and i can't get enough rest. it's dreadful seeing his decline but i could never ever leave him. i am here to the end.

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Wow! This is my first time reading this part of the forum, but I feel like I've always been one of you! I've cut ties with several friends because I found that I did nothing but complain when I was with them. I cut ties with two others because they did nothing but complain to ME and I felt bad enough all by myself.

 

This forum is a life and sanity saver!

 

Linda

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Sara Kay, I can feel your pain.  My brother has had Parkinson's for nine years and two years ago I moved in with him after loosing my job.  I know take care of him as my job.  Through out my life, I have found some people are listeners and some are talkers.  You apparently have been blessed with the gift of listening to people as they trust you.  I know that at times, I feel I should just open a office with a couch and start charging for my time.  I have found different outlets to vent my frustrations with my circumstances.  I have a couple of friends who I know I can vent to and that helps.  Usually I let them know I just want to vent when we get together.  I also vent to God.  Although he knows what I'm going through, it still feels good to say it sometimes.  My brother is also in stage four of dementia.  That has added another level to my frustration.  I also think this is a great forum for those of us sharing that we are not the only ones dealing with these sames issues with our love ones.  

 

I've taken to going to a near by club to work out.  Exercise seems to help me, swimming etc., to say nothing about being able to get away for a couple of hours.  The other thing that works for me is I keeping telling myself, one day at a time.  Sometimes, one hour at a time.  

 

When things are really bad, talk to the group.  You might also check in your area for a Parkinson's Support group.    

 

Really good thoughts, lhtrevor.

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SNIPPED FOR BREVitY

so now it's my turn to help him and he is so appreciative of everything i do. he is slowly losing everything including his cognition. we don't sleep together any more because he snores very loudly and i can't get enough rest. it's dreadful seeing his decline but i could never ever leave him. i am here to the end.

Hello -

I am new to these forums and I know this is an old thread. Just wanted to say that my husband snored to the point where I could not sleep in the same room either. He now has a CPAP machine and we sleep in the same bed again. The CPAP also means he gets better rest which is good for Parkinsons, although to be honest neither of us can tell the difference. You might want to ask your doctor for a sleep study and find out if your husband has sleep apnea.

 

Maggie

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OH, my dear Christie

I am so very sorry that you are trying to deal with this and your PD at the same time. I cannot even imagine what you are going through. My friend is going through her second divorce!  She has migraines, fybromyalgia, pains in her stomach, knee and she is clinically depressed. Her husband has Aspergers. Talk about troubles.

i will try to be more compassionate but after 30 minutes of non-stop poor me every time i talk to her it does wear me out!!!!

 

i need to be more honest and tell her that i can't talk right now as i don't have the fortitiude to listen, don't I?  This is so hard! 

I'm seeing my counselor today and my nurse practictioner tomorrow who can prescribe meds. I have been seeing them for several months. i will consult them about taking more antidepressants as i to am clinically depressed especially this time of year. also ask my counselor what she might suggest about frtiends dumping thier woes on me. how i could handle this better.

people vent to get relief,Dr.low calls it the complaining clinic.if its a matter of right or wrong the reporter will get brief relief but the listener will get upset,feelings of sympathy or apathy should be reported and all get relief and peace restored

People have inborn ability to know when another is needlessly getting upset,to bad we can't figure it out ourselves,lol

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