Rheumatoid Arthritis Caregivers
This group is designed to assist those who are caring for loved ones who suffer from RA.
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3 months ago
My wonderful husband has psoriatic arthritis, he was diagnosed a little over two years ago. We have three kids. He will be 40 this next birthday. every drug he has tried he is allergic to. Nothing is helping. The steroids help him a little but make him too mean to be around. He just lost his temper, I got back home late from a family birthday with the kids. And now I feel guilty about leaving, sad that he is so mean to me about everything, and just realizing this is it. This is our life, I will be asked over and over again if I am a single mom, and I will be alone at every party and should I bother going out to a party, he needs me, even if he does just blow up over absolutely nothing. It's so hard watching him working from home, and seeing him stress out over everything, watching him get worse daily because everything he takes is just not working. Trying to help and getting rejected over and over again. Watching the kids ( all 3 are under 10. ) miss their daddy, they jump over each other to say hi to him first. I constantly have to explain to the kids he is on a medicine that makes him cranky. And people don't usually treat others the way daddy does its not polite. my heart is so heavy. I love my husband and my kids. I am so tired of being sad. And he is too. I try to talk to him, but the steroids are always too much. Two years of steroids, is so awful. His skin getting stretched with all that water, it's more pain on top of all that joint pain. I don't know what to do anymore. It feels like he hates me. Nothing I do is rite. and it shouldn't be about me. He is having all this medical trouble, and I need to be calm and supporting, but when I do. ... ahhh. ..I hate this disease, ...and darn it. I'm not even in the correct group, he has psoriatic arthritis!!
5 months ago
It's so hard watching my wife go through this each and every day. I feel like a part of me dies a little bit every time I see her in pain. I just really hate this disease. I'm hoping we can get it under control soon...I'm getting exhausted being both the mom and the dad in the house. I'm trying not to feel sorry for myself, but some days it's really tough not to. I need time for myself, too. To recharge, re-energize. But when? Anyway, I'm glad this forum is available because I certainly feel as if I need it!
9 months ago
hello, I have RA. its been 30+years. My mom is 88 and moved in with us 3 yrs ago. she was diagnosed with dementia 2 yrs ago. Other than the dementia she is outstandingly healthy. her doctor marvels at her health and strength. I on the other hand have deteriorated much since she moved in. She is social, I am not. She watches me struggle with her meals but waits patiently at the table. she does not require a lot of sleep but I do. she is up at 530 while I am struggling with stiffness and pain from 7am on. my husband has always been very helpful and caring for me but now resents her and is always angry. I am looking for assisted living she can afford. I have one sibling. She has so many problems and cannot help. why do I feel guilty about putting her in a home?
An anonymous caregiver said...
10 months ago
My 51 year old husband has moderate to severe RA as well as other spine/disc issues. He is on so many prescription medications including high doses of opioids for pain. I have to manage his pain meds because he doesn't handle them well on his own. He also has been diagnosed with severe depression. I know he is suffering, but I am finding it increasingly difficult to support him due to my own feelings of isolation, lonelyness, depression, anxiety, and years of self sacrifice. He is constantly starting back to work and then going on short term dissibility, and I fear he will lose his job. We can't make it on my salary alone. So much uncertainty!
11 months ago
My husband has sever psoriatic arthritis (an auto immune disease) and has just given up on everything on life. He is either such a bear or so withdrawn that I cannot reach him. He has spiraled into a lasting depression. I make appointments but he does not follow through, he starts therapy only to stop. We have been going through the process of trying to apply for disability, but it has been complicated by him missing so many doctors/therapy appointments.
I have a beautify 11 year old son who is also in turmoil over all of this. I am in Texas and all my family is on the west coast, and his are too far away to help. Been up and down (mainly a slow slide down) for 5 years.... Just at a loss right now...not sure how to move forward.
An anonymous caregiver said...
11 months ago
It's hard not to be selfish when your spouse is in chronic pain. My wife who is 25 has been dealing with RA for 4 years now, and the pain and difficulties are still increasing. I want her there to go on walks, bike rides or little hikes with me but its hard for her to go. This felt like the hardest part of our relationship, unable to do physical activities. But as time goes on, its the mental and spiritual exhaustion that takes its toll. Its hard to see the one you love in constant pain and exhaustion - to not be able to help. Like many have said below, all the focus goes to the one who is pain. Its hard to be in cheerful mood when shes in pain and its hard to bring up your pains when hers is so much more. So its hard to be around pain and exhaustion all the time when you have so much energy in you and to not be selfish.
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