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Bruin11

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New to the forum and wanted to reach out to those of you that could offer some guidance on care giving role I play. My wife of 35 years has battled Fibro for 7 years now.
Background:
I still work full time and have to travel out of town occasionally.
She manages pain with Butrans patch and supplements with Tramadol
Lamictal for anxiety/bipolar stabilizer
I manage most of the household and most of the errands and shopping.
She has difficulty getting quality sleep and is restless at all hours of the night. We manage with some meds to assist and made the master bedroom her room and comfortable.
Intimacy and loving connections are rare. We tried planned date nights and was great, but quickly fell off the priority list.
I cherish this woman and proud to be her husband.
The difficulty I face is managing the ebb and flow of the good days and bad ones. Triggers of stress and flare ups seem to come from unpredictable sources and effect her greatly.
Often the support and caregiver role I play and welcome, makes her more anxious and feelings of guilt.
It would be helpful to understand from the experience in this forum to understand the care giving role without unintentional creating additional anxiety for her.

Additionally it would be appreciated if any of you see the need to re-evaluate her med regiments giving advances and side effects. She has been on this med path for almost 4 years.
Lovingly frustrated!
 

Bruin11

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Updated.
Since I last posted, the activity level and her interest to climb out of her protective cocoon has not changed. Her routine is rooted in TV, social media and reluctant to engage any activities beyond her room. With the experience in this forum, is it possible a caregiver can do too much and enable isolation tendencies? Is it likely that the unintended consequences of support contributes to her feelings of dependency and in the end enables this behavior? Perhaps she has grown accustom to being cared for and I am part of the problem. Do I revise or stay the course?
 

1sweed

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That is a hard question and yes I think we can become over protective and do to much without knowing this might be bothering the person we care for. I have a friend who recently got married. She has advanced Parkinson disease. She had been living alone for years and managing just fine up until this point. After getting married her new husband hovered over her not leaving the house jumping up to do everything and she felt smothered by all this unneeded attention, and told him to stop worrying that he could leave the house and do his hobbies and let her manage around the house. And so now though I am sure he still worries when he is away from her, he lets her do her own things too.

Another person I know his wife has MS, and while she is mostly bedridden he gives her a bit of free time by going to the local gym for an hour a day, as well as, going shopping and visiting friends. This gives her some time and gives him an outlet for his stress. But they keep in touch in case of emergency.

I took care of my mom and it was hard but necessary to allow other care givers and friends to help out so I had break time for a few hours a few times a week. Sometimes it is a good idea to step back and examine our actions and think of ways to allow our loved one a bit of freedom to be independent in areas that they are able to do for themselves so depression does not become overwhelming and they begin to feel like a unworthy person.

I hope this helps and feel free to ask more questions and we will try to tell you from our point of view in dealing with fibro in our lives.
 

Bryn

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I have fibro and my husband is wonderful but to be honest we had to do a bit of therapy to get us into the right space. I had to learn that "every day is an adventure, just not always the one you planned" so that I could make the best of every day and accept my own limitations. My husband had to learn that we had to be flexible which helps reduce frustration. We no longer sleep together, because I have trouble sleeping due to the discomfort and he snores. I love him dearly but it got so bad that I pondered using the hose of his CPAP machine to strangle him because he still snores but now sounds like darth vader snoring. It's real fun to do the "walk of shame" in our own house, teenagers be darned.

Intimacy is more of a quality than quantity type thing. However, we have adjusted what intimacy means to us. Sitting together and having him place his hand on my leg gently has replaced rubbing and stroking. Snuggling might be us on opposite ends of the couch and his holding my foot. We hug lots but have to monitor the pressure. Sometimes we just lie down and hold hands. But on those good days......he still rocks my boat.

He is allowed to ask how I am doing and what my pain level is without me getting frustrated or feeling smothered or guilty. But he has to accept that on a good day I may push myself a little bit because if I don't I cannot guarantee when I will have an opportunity to do things I want. We have shifted some of the house hold tasks to a different balance which allow us both to feel like we are contributing.

I wish you luck. Communication is key. When in doubt just ask and accept what she tells you to be true. Everybody wants their partner to be their safety net and their cheerleader, that doesn't change when a disorder/disease becomes involved.
 
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