Relationships

[Joealt]

My wife and I got into a fight yesterday. I don't even know what it was really about, but I think that this Parkinsons thing is getting to us both.

I love my wife very much.

[jillannf6]

Hi we r fighting too much too

Arguments etc are never ending

And I m so frustrated by my inability t o,do much. To,help

Lol Jill

[shasha in reply to jillannf6]

I KNOW EXACTLY WHAT YOU MEAN JILL- ITS JUST SO AWFUL TO JUST NOT TO BE ABLE TO DO ANYTHING TO HELP-

TRY AND BE UNDERSTANDNG TOO OF YOUR PARTNERS ( NMAE ?)

FRUSTRATIONS TOO

[Jeni]

That is to bad about the fighting. Parkinson's is not an easy thing for anyone. I know how hard it is on me and I am very lucky to have a loving understanding husband. This is not something we wish for or asked for. Just try really hard to work together and remember it was no ones fault, you are in this together. You can make it work if you want to.

[Joealt]

My wife is a wonderful person.. This morning I tried to console her, to make things right again. I gave her a hug. Told her that I love her. She told me that she is tired. I understand what she is saying. She works hard. Life is complicated. People tend to get unraveled in an effort to keep up. She tries so hard. I wish that she would relax more. I wish that I could do more for her.

This evening we will be entertaining a good friend of ours who is in town on business. This is the person who introduced my wife and I to one another 30 years ago. I was a blind date. Maybe things will get better after a wholesome visit.

[CJ49]

I too have been "short" with my husband of 40 years. The stresses of this disease just is a little much at times.........Make sure your spouse knows it's the disease, "not you" or him.

Good luck in the future.

[Joealt]

I tell my wife that I think that it's The Parkinsons that has come between us. I try to explain that there are things that I can no longer do, that I have become afraid to do for some reason. But when I try to explain this to her I feel like an idiot because I've always been the kind of person who thinks that humans can WILL away The Demons.

[Hidden in reply to Joealt]

Mine divorced me after 19 yrs.

Good luck

[CJ49 in reply to Joealt]

I believe we can "will" away some demons.....but Parkinson's chisels away at the spirit.......Keep the faith and don't forget to pray for "strength" to endure our trials........I agree with some of the other posts, your wife needs some R & R....maybe a "girls night out" would help. !?!

[soup]

Do you have a chance to get some time away from each other and just be yourselves? It's very hard to be a carer but equally hard to be a 'cared for'.

In England we have the Expert Patient Programme for people affected by long term conditions and it helps both partners to talk and develop strategies to find themselves again.

[compucure in reply to soup]

I live in UK and have not come across the Expert Patient Programm. I would love to know more about it. Tony

[soup in reply to compucure]

Try this link. nhs.uk/conditions/Expert-pa...

You might have to google it if it doesn't work.

I know that Parkinson's UK is looking at the advice offered in this programme and trying to adapt it to Parkinson's. They also have a confidential 'mentoring' phone call system for someone to talk to. The people on the other end of this service have different experiences of Parkinson's; carer, pwP, so they try to match the mentor to the person phoning.

[fishinggirl in reply to soup]

When my husband and I get "snappy" with each other, which is bound to happen now that we are both home together all the time, we usually take a nap and most of the time, life is better when we wake up. Or we both plan a day doing something apart, with at least one of us leaving the house for a few hours.

[lmbanni]

I was saddened to read your post. I feel for all of us who fall into that part of this "monster's" trap. It is very hard to deal with and I am a caregiver wife too. I hope your wife reads and asks questions about PD. I hope she knows that this "monster" takes away soooo much from people. Self esteem, confidence, the ability to be alone is a BIG one!! Many do not underatand the anxiety that comes with PD. Anxiety causes fear. That fear is overwhelming in PD patients. If anyone has had panic attacks they will understand that feeling. That is how I read about it feeling to PD patients. If she is made aware of this maybe she could understand why you are afraid to do some of those things you mentioned you have become afraid to do.

It helped me when I learned about that. It made me understand why my husband didn't want to talk on the phone anymore and make his appointments or to talk to a phone telemarketing person, It would come and go for him and I just didn't understand it. He always talked to anyone before. It sometimes made me angry that he wouldn't any more. I think learning as much about this disease is sooo very nesassary to keep a marraige together. I also agree you both need a few hours of free time. You could be with a friend or family member while she does something she enjoys. That is what we do and it helps us. My husband needs guy time and I need girl time or just alone time.

Hope some or all of my suggestions help. God bless you both and may He give you both the strength to work at being patient with each other and understanding of one another.

Mary

[esrob]

Being a carer and being cared for are both difficult places to be and an inevitable part of a long partnership. I have learned never to take anything on earth for granted, and am grateful for my loving husband. He does have one advantage, though. If he has time off, he can leave Parkie behind, but I have to take him wherever I go!

[CheriH]

Joealt, I am guilty of the same thing. Sometimes I am short with my husband of 38 years, and he is so good to me and for me. I always feel like a horrible person and am mad at myself for acting that way toward him. My husband is the last person on this earth that I would want to hurt. PD is a tough burden to bear on all families, especially caregivers, and it makes us all tired.

Why do we hurt the ones we love? I've read that you hurt the ones you love because you tend to take them for granted. You assume they know what you want, think and need but most of the time they don't so you rebel in some form, be it by yelling, ignoring or being downright mean to them.. Love doesn't hurt but people who are in love often hurt each other.

I am trying really hard to be a better person and wife to my husband. When I feel the need to lash out, I try to think of his feelings. The PD isn't his fault. I speak sweetly, try to be conscious and understanding of what he is going through, and use humor! We all need humor to get through our days.

I know it is hard, and you feel badly about what happened; but I am in hopes that today will be a better day for you and your wife. Hopefully, your friend's visit helped you and your wife reminisce about the reasons you fell in love with each other 30 years ago. Good luck to your and your wife. You can get through this!

Thinking of you,

Cheri

[wifeofparky]

We have been married for 42 years. Hubby was diagnosed 5 years ago but in retrospect, he has had PD for a lot longer. I am only 62 and need to work 3 more years before I am eligible for Medicare and retirement. Since he rarely drives any more for safety reasons, he gets upset that my job has been making more demands of me lately and I m not around as much as we'd like.I understand that he feels trapped and try to accomodate his needs to get out whenever I can. However, I am exhausted when I get home from work, both mentally as well as physically since I am literally a "caregiver" at work. I am often stretched to the limit but he doesn't seem to see that I am also affected by PD . I can undertand why some spouses/partners escape the relationship.

Lately, I haven't been able to attend our Support Group Meetings and I miss it. I really appreciate this forum as it helps me maintain my perspective.

[moonswife in reply to wifeofparky]

Wifeofparky,

I sure hear your anxiety in your words. My story is nearly the same, but for a little longer and will have to work at my business until at least full Social Security. Wish I had time for a support group, I am using my evenings and weekends to take a massage therapy program at a community college because my husband REFUSES and type of pain pill as he is convinced they change the effectiveness of the PD meds. My fellow students know I am not seeking a certificate to practice so they look at me as the Grandma of the class. I am the boss at work so I am a caregiver there too. And I am on call by cell 7 days a week.

Tried a short vacation (3 day) lasted 30 hours. He wanted to come home. And that is ok. There is plenty of work for me here.

[wifeofparky in reply to moonswife]

Here is a virtual HUG! I have a deep faith and believe that God only gives me what He knows I can handle. He must think I am very strong.

[Brooke]

My husband of 49 years has been great about helping,I know sometimes I act like a brat.I have made up my mind instead of doing all the thing I like to do for myself when my meds are in full gear,I put on some lively music and do as much as I can to keep the house nice and tidy.It really makes me feel good to see everything in order.Then I don't feel guilty and I pamper myself.Take the time to smell the roses and enjoy every moment when you feel good.,"Life is not waiting for the storm to pass...its about dancing in the rain"

[PatV]

I"m single but at the moment heartbroken. My daughter who's my best friend I thought told me at the Parkinson's Walk she "wanted to take a break". That was a month ago.

With apologies to folk singer Leadbelly:

PD's alright to have, but your kids treat you so low down

PD's alright to have, but your kids treat you so low down

Don't you ask em for a favor, they'll even stop comin around.

Mmm - PD is killin me

Mmm - pD is killin me

My mama I'm like a prisoner, always wishin I'm free!

[Joealt in reply to PatV]

Thank you.

[tlongmire]

Joealt,

Love conquers all. You clearly love your wife and I'm sure she loves you. It will be as it is met to be and I'm sure things will work out just fine for the two of you.

I feel bad that I can't do more for myself. This surely wasn't the life any of us thought we would live. I am thankful though for everything my husband does for me and I thank him for each and everything he does for me. I told him the day I stopped thanking him he'd know dementia (please God no) had begun.

Good luck.

[Joealt]

The friend that I mentioned earlier came by and gave us a painting that her husband painted of us back in 1982. The picture is titled "1st Kiss". The artist is Jess Coburn.

The painting did it's magic. Things are better.

[wifeofparky in reply to Joealt]

I am glad to hear some good news.

[PatV]

Joealt, so glad. Never give up hope

[lmbanni]

Very happy for you!!!

[merlethegirl]

You're lucky to have love in your life. Cherish it! I'm 62 and I don't think anyone out there would be crazy to fall in love with me. I don't even think I have the time to be bothered with it.

[export]

I would love to know if any one has found love after the parkinson's has got a good hold .

I have been on my own for the past 10 years . When I say on my own . I mean just that live on my own . My wife did one when I stop't going out.

yours EXPORT.

[Ryan]

Hang in there as best you can folks. Life is not easy with PD. It requires a lot of education on both sides. My wife and I after 28 years, didn't make it. I hope that others have better results. Perhaps, I have a better understanding now, but I'm not sure that I would trust myself in another marital relationship. I have many very special friends in and outside of Parkinson's. This has allowed me to move forward and share my love and special relationship with grandchildren. There is a small gap, but I have tried move forward as is!!

Best to all. Come to the World Parkinson Congress in Montreal the 1st week of Oct. 2013. It promises to be the most beneficial Parkinson event to date!!

Ryan