Need support group for families of chronic illness
I've searched all day, and I can't seem to find any support groups for families of those suffering from chronic illness, so forgive me, as this doesn't have much to do with crazy BM, although that's no help here, she tells the kids she doesn't believe there's anything wrong with DH... and skids are actually being surprisingly, and exceedingly understanding about DH's illness. DH suffers every day in pain. He has psoriatic arthritis, which basically means he's developed psoriasis which progressed to severe pain in his joints. He sees his rheumatologist every 4-6 months to deal with his condition, and his primary care to deal with his pain. He's currently maxed out on humira shots at every 10 days. This alleviates his symptoms for about 3 days, and the rest of the time he's managing pain. He also takes methotrexate, which is a drug they use for leukemia, meaning he cannot ingest anything that will hurt his liver ie alcohol or tylenol. Consequently, he's had to forgo all forms or hydrocodone for pain, and now has oxycodone, which he's been on for 2 months, and works for about 2 hours at a time. He's going to see the PA in our practice to see if we can't get a higher dose, or if he should take it more often. He described the pain as like having run a marathon the entire day before, and then feeling the pain of it in his joints. And that's a good day. Other days it's like having a level 10 growing pain in his joints. It mostly affects his legs, and the pain interferes with his concentration so much, he has difficulty working, let along taking on chores around the house.
I've spoken to him about his lack of decent parenting, and he has stepped up that part of his life. And it's much better now in that regard. But between worrying about him suffering constantly, and trying to take care of 4 kids' needs (meals, dishes, laundry) not to mention keeping the house in order, and still being able to work is becoming overwhelming. I find myself, the insomniac (it's 2:58am as I write this), and during the day, I have to force myself to get things done. I'm falling behind in staying on top of finances, and my office is just turning into a mountain of papers I can't seem to get organized. I can't even think about cleaning up from Christmas just yet. I know, now seems like the perfect time to do any of this...and that may just be what I end up doing. But ultimately, I find myself feeling overwhelmed. To add insult to injury, I'm finding myself starting to get annoyed with DH. It isn't his fault he has this condition, and when I seem upset, he acts very worried, and caters to my every whim (even to those I don't have) like he thinks I'm going to leave him or something. It's actually pretty annoying, when all I'd really like is some help, and a break. Maybe a little time with him. I told him this afternoon I was feeling lonely, and he came home from lunch and spent some time with me, but the evenings, after the kids have gone to bed lately, it seems he just wants to be alone. I was so wiped out tonight, that I crashed on the couch, and woke up at 1:30, went to bed, after he had already gone and left me to sleep there. His cell phone bleeped, and then I was wide awake, and here I am now.
I don't think anyone really understands how debilitating his condition is, so it's difficult to talk to anyone about it. If he shoots a couple hoops with his son, he's rendered completely helpless until his next shot of humira in 7 days. I hope the rheumatologist will give us a different drug tomorrow. I also have an appointment with the family therapist, where I plan to discuss this with her, (along with the BM is so annoying thread). But for now...I just worry. And I can't sleep.
My mother was sick for 10
My mother was sick for 10 years before she died. She originally had Non-Hodgkins Lymphoma, then Myelo Fibrosis, some sort of TB like lung infection, later that same sort of infection in her spine, then the return of the Lymphoma, and finally Colon Cancer did her in. She had no immune system for close to ten years, so she was basically house-bound on oxygen. During most parts of her illness, she was unable to be alone, so my father and I were her caregivers, mostly my father.
It's different than your case because we knew my mother would eventually die. She was sent home from the hospital with the lung infection after the doctor told me outright she would not make it through that infection. That was only 2 years in to that 10 year long ordeal. Anyway, the stress of being the care-givers and seeing your loved one suffer was horrific. I was in my 20's, and went through some awful depression, PTSD-like years that landed me in a mental hospital for a few days. I felt guilty any time I went out and enjoyed myself (although I'm grateful I didn't actually live with them!). For my father it was even worse. Toward the end he ended up having physical problems himself. He had Prostate Cancer (cured thank goodness) and right at my mom's death, he found out he had Rheumatoid Arthritis, as well as other issues, as well as the beginning of Parkinson's.
All the doctors agree that the stress of care-giving for such a long time probably contributed to my father's current health problems. My father is now marrying a woman he barely knows because he wants someone to take care of him the way he took care of my mother. He's trying to buy her love and entice her to stay. I'm worried about him, but I can't do anything about it. I'm worried our relationship will crumble at the end of my father's life, but father refuses to listen to reason, then tries to say horrible things to me to try to get me to see his way. I can only hope I worry too much, and hope he's happy. If he ends up broke and alone, well, it was his money to spend frivolously as he wanted.
I hadn't ever seen any support-groups for care-givers back in the day, and that surprises me as you are not alone in this. Does your local hospital offer anything? Do you see a therapist yourself just to air any grievances or let go of some stress? It must be so hard for you having to take care of more than him.
Thank you so much. I am about
Thank you so much. I am about to see our family therapist in about an hour, so hopefully that will help. It sucks to be in a really helpless position. The rheumatologist wants to change his medication to remicade, which means 2-3 hours on an IV, initial, then two weeks, then 4 and every 6 after that. We'll probably start it up in 6 weeks. Hopefully that will help, and she said the nice thing about the remicade is you can adjust the dosage every time unlike the pens. I really hope this is the one that does the trick.
You know I was thinking that
You know I was thinking that myself. Maybe physical therapy too, but I know that's really expensive. Our grocery store has a nutritionist on the payroll, I bet a stop by her office wouldn't hurt. Thanks for the idea!!