Caregivers Support Group
A voluntary caregiver is a spouse, relative, friend or neighbor of a disabled person or child who assists with activities of daily living and assists those unable to fully take care of themselves. The challenges of a caregiver are unique and sometimes it's hard to find people to talk to who know what you're going through. Join the conversation and find others who...
I feel like my husband's fibromyalgia is a dark cloud that hangs over every single thing we do as a family. Things that used to be simple, like getting family portraits done or attending church or a party... they're all hard. Every single thing we do together is hard.
We tried to get family photos done at Wal-Mart yesterday. It was awful. The baby was too tired and grumpy. The 3 year old wouldn't sit still. And my husband spent the whole time in severe pain, sweating bullets, and kept getting mad at the 3 year old for not sitting still. I knew he just wanted to get it over with, so he was mad at the 3 year old for making it take longer by not sitting still. But what kind of kid would be able to sit still when the photographer is trying to make his baby brother laugh, and his dad is yelling at him for moving and not smiling at the right moments.
Our church had a who-ville themed Christmas party last night. My husband decided at the last minute (literally - we were getting our coats on) not to go. He was right not to go. It was incredibly loud and exhausting. But for me it was worth it to see our son have so much fun. But for me, there's always the disappointment of the empty seat next to me. The fact that I'm there without my husband. I feel sorry for myself that I'm "alone". I feel sorry for him that he's missing out.
And yet I know it would have been worse if he was there. He would have had such a migraine and been so overstimulated that we would have had to leave early, and the time we were there would have been miserable, the party would have been something to "get through". It would have taken him a couple days to recover from being there for 2 hours.
But what kind of family life is this? Daddy is either absent at events, or miserable at them. Sometimes even a simple family dinner at home is impossible,because our kids are too noisy for him to be around...So he either eats in a different room, or he sits there, grumpy and mad, and has absolutely no patience with the 3 year old, so he's angry with him for every little thing he does.
I don't know if this is making sense but I have to talk to somebody who understands. My heart breaks over and over again as I grieve for the family life I thought we'd have. Every day I feel a mixture of feeling so sad for my husband that he has to suffer like this, and feeling sad for the rest of us that we have to live with this. I feel like I'm the glue trying to hold our family together. I try to be positive and make adjustments and know this is just part of our life.....but it's unbelievably hard. Thanks for listening.
We tried to get family photos done at Wal-Mart yesterday. It was awful. The baby was too tired and grumpy. The 3 year old wouldn't sit still. And my husband spent the whole time in severe pain, sweating bullets, and kept getting mad at the 3 year old for not sitting still. I knew he just wanted to get it over with, so he was mad at the 3 year old for making it take longer by not sitting still. But what kind of kid would be able to sit still when the photographer is trying to make his baby brother laugh, and his dad is yelling at him for moving and not smiling at the right moments.
Our church had a who-ville themed Christmas party last night. My husband decided at the last minute (literally - we were getting our coats on) not to go. He was right not to go. It was incredibly loud and exhausting. But for me it was worth it to see our son have so much fun. But for me, there's always the disappointment of the empty seat next to me. The fact that I'm there without my husband. I feel sorry for myself that I'm "alone". I feel sorry for him that he's missing out.
And yet I know it would have been worse if he was there. He would have had such a migraine and been so overstimulated that we would have had to leave early, and the time we were there would have been miserable, the party would have been something to "get through". It would have taken him a couple days to recover from being there for 2 hours.
But what kind of family life is this? Daddy is either absent at events, or miserable at them. Sometimes even a simple family dinner at home is impossible,because our kids are too noisy for him to be around...So he either eats in a different room, or he sits there, grumpy and mad, and has absolutely no patience with the 3 year old, so he's angry with him for every little thing he does.
I don't know if this is making sense but I have to talk to somebody who understands. My heart breaks over and over again as I grieve for the family life I thought we'd have. Every day I feel a mixture of feeling so sad for my husband that he has to suffer like this, and feeling sad for the rest of us that we have to live with this. I feel like I'm the glue trying to hold our family together. I try to be positive and make adjustments and know this is just part of our life.....but it's unbelievably hard. Thanks for listening.
I'll keep you & your family in my prayers.
Hugs, Phoebe
I get that part. But, on moments that things are ok with him....I hope he can give some love and attention to the kids.
He sounds like he suffers terribly, and I am sure that is such a drain on you. My husband has been ill, and I had my stomach in permanent knots (and my shoulders are locked onto my ears!)...So I do have empathy.
I am just trying to focus on being grateful. It is hard. I know it seems impossible, but you need to have a few minutes for yourself....I used to take the kids for a ride in the car so they would fall asleep so I could just THINK...and once in a while I would tell them mommy needed a time out, and I would go have a cup of tea in a separate room. I wish you peace. And send you hugs.
Phoebesfriend - I always appreciate your posts on here. I thought about posting to the fibromyalgia support board, but I've learned that most people on that board either already feel guilty for how their loved ones are affected, or they've been treated like dirt by loved ones who don't get it, so if I talk on that board about how the fibro affects me, then I get some nasty and defensive responses from people who think I'm not supportive enough because I'm talking about myself..so I end up offending people and getting stressed out about it....so I wanted to post here to people who understand what it's like to be the one supporting someone with a disability, even if we may all support people with different disabilities.
blueviolet thanks for helping me remember that other people go through some of the same things but for different reasons. I was talking to a friend once about how I worry that my kids will think daddy is lazy because he's always sleeping when he's home. She told me that because her husband works nights, the kids see that he sleeps in the day, and they understand it and don't think he's lazy. It helps me to see that some of the things we deal with are more "normal" than I might think.
HHCARD in so sorry to hear that your situation was and is so hard. I don't think staying in a marriage is a mistake (unless it's abusive). Your kids would have been affected by his illness even if you weren't together, so I would hope that by staying they have learned something from you about sticking by your lioved ones no matter what and not giving up. I think you've done the right thing even though it sucks.
We've had a good few days this week and been able to do a couple fun things as a family. It helps me to be able to vent here when things are bad and I think it also helps me appreciate the good times too.
Sorry to hear you are struggling so much. All I can offer is hugs and prayers.