For those who care for someone with Parkinson's disease
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Topic Is the forum your diary? Go to previous topic Go to next topic Go to higher level

By oshroshr On 2013.02.25 10:49
I have been here on and off for a number of years and it seems that all of you are the only ones that understand what this life is like. When i go to post I usually can find an answer first without asking the question.
My husband doesnt read cause of tremor and keyboarding is torture. I find good answers but am timid to tell him I discuss him with strangers. Does anyone else feel that?
It has been 8 years. I retired 5 years ago to be around all the time.

By jcoff012 On 2013.02.25 12:09
Hi...I guess my husband is used to me being online, because he sees me texting and typing away! I can understand his reluctance, though. The Internet is packed with information, but it is often cold. It may be a stereotypical, but I don't think men like being discussed in public. However, tell him from me, we only want to help each other. No one wants to embarrass any PWP.

Hugs to him and everyone, Jane

By GladIhavehorses On 2013.02.26 00:30
My hubby knows visit this site but I don't let him visit it only because I my self was shocked to read what others with PD are going thru. It's not as though we don't know, but when it is from someone actually living it, it is frightening.I believe it would only send him into a depression when he would start to have simular symptoms. Sometimes ignorance is bliss.

By seawench On 2013.02.26 11:45
My hubby appreciates the knowledge, wisdom and support I glean from the sites I visit. He understands that frank conversations are involved and that there is personal sharing that stays within the site. He chooses not to surf these sites because it's just too hard emotionally and would accelerate his fears. So I am fairly free to express myself here and I am glad to have people who understand and help if they can even if it's just to say "I know".

By jcoff012 On 2013.02.26 12:00
I HAVE to add that my husband REALLY enjoys Al's input because he has gone so far ahead of him in this journey. Carl, my husband, says he looks forward to seeing what Al will say next! Thanks, Al. As caregivers, we appreciate you, too. ;)

By parkinit On 2013.02.26 22:51
This is my private place to share with others in the same boat. I agree that no one knows what we go through except others who are going through the same thing. My spouse knows I go to this site and occasionally he asks me to pose a question here, but he has never perused the site himself as I believe he understands it is a place for us to go and share with one another as caregivers. Occasionally, I, too, share Al's comments and my spouse really appreciates his view points.

By Onedayatatime On 2013.02.27 19:28
Hello, This is my first post. This topic hit home and brought me out of the shadows. I have been coming here daily for the last three years, since my husband was diagnosed at 45. I have read every post and feel as if I know all of you. I have laughed with you, cried with you and prayed for you. Thank you for being there for me, even though you didn't know I was here.

By lilflower On 2013.02.27 20:12
I've only come to this forum myself recently and it truly is a blessing to know that I am not alone to hear what others are going through and how they handle the stress and different ideas and suggestions are very helpful. I hope to be able to open up more and share more myself everyone one hear seems quite incredible. Thanks for being here.

By jcoff012 On 2013.02.27 21:58
Welcome, One day,

I hope you find what you need here. Hugs and love, Jane

By Witsend On 2013.03.05 11:12
I sometimes feel I should have a diary. I don't use this forum as a diary because it would just read over and over "I'm miserable, I'm miserable, I'm miserable". My husband wouldn't and couldn't begin to understand any of that, as he only sees his life and his feelings. The only way I survive is to ignore my feelings, because there's nothing to be done about them, or the situation. I'm on anti-depressants, and I just try to get through one hour at a time. Honestly, at times I hate my husband. I know it's because of Parkinson's, and I should say I hate the disease. But after all these years, I'm at burnout stage, and can't always muster up the strength to say the right thing, or to pretend I am better than I am.

Having said all that, I always appreciate this forum because I know that you all understand my feelings, and are going through the same struggles.

By Jane On 2013.03.05 11:19
I have the exact same feelings. The other day when my PWP was saying how horrible a caretaker that we both know was for putting her mother in a board and care home, I responded with saying that just maybe the person who is being taken care of and won't go into a home is a selfish person. Why is all the guilt of not wanting to take care of someone on the caretaker? I think that the person being taken care of may be selfish whe he or she never looks at what this situation is doing to the caretaker's life.

By jcoff012 On 2013.03.05 17:38
I truly am sorry the burnout is so bad for you both. I simply don't know what to say. Sounds like you both need "me time". I hope you know that no one should be expected to be a 24 hour a day caregiver, with no breaks.

See if this gives you a fresh look on this...I began being our youngest grandson's caregiver when he was 3 months old. He is 3 1/2 now.bI moved in with our daughter and SIL for 6 months; then, we bought this house and I moved in here for six months by myself, still watching him from 7-6 daily, weekends off. After my husband retired and moved down, we BOTH started watching him five days a week...after five months, I sat both the parents down and said, "I need a break and we need time for ourselves...put him in daycare Friday and Monday so we have 4 day weekends." They did, and it has been a lifesaver...

Can you do something like that? Can you find him a place to go for a few times a week.? Do you have relatives that could come into your home a few times a week? But, most of all you NEED to find solace in a hobby, shopping by yourself, a long quiet lunch with friends, an exercise class, etc...

We all understand. We are NOT insensitive, but we want you to be well...and happy. Hugs, Jane
Remember: it is NOT selfish to get away from this disease...recharge!

By Rempt2 On 2013.03.08 01:36
it's really important to find one thing you enjoy. Not just because you are a caregiver but if you are in any unpleasant situtation (a bad job). I had a temp job once that Ididn't like but I needed the money. Each day would start with a cup of coffee. I so looked forward to that before going to the job. If you can find time to exercise or go to a support group you and your PWP will be better off. I cancelled several appointments this week as it was a hard week at work. People who know your situation will understand. I'm not shy about telling people anymore. I think you have to tell why you can't do something even if they don't understand PD. reach out to people in your church or community. God bless

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