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Caring For My "Caregiver"

  • By joni

    Mike has played so many different roles in the over 30 years he’s been in my life. He’s been, among other things… my friend, babysitter, playmate, drinking buddy,pinball wizard, hero, boyfriend, moving man, mechanic, festival freak dance partner, security guard, book club, back up against the wall fight for it with me partner parent, happy tent-mate and a wonderful, loving husband. Now a new role has begun, not one either of us expected, but one that it seems has a way of altering all the others, even some of the not so hot roles that i left off the list are being changed… It’s not fair to either of us that he is becoming more and more my caregiver. It’s also totally unfair,( unfair is such a faint word when it is truest )that there seems to be no one out there to support him in all that HE has lost in this battle with my immune system.
    When we first became a couple, i was already dealing with multiple allergies and severe asthma issues. While i did have to spend a few nights in hospital a couple times a year, the rest of the time then, i worked, i tended to the house, the children. We had friends, family and playtime… we were just a semi-normal couple on their second marriage with 5 ready made children. i was, well… i was in my twenties and on high doses of theophylline and prednisone. Mike worked 2nd, and 3rd shift, my lack of sleep often worked in favor of our relationship. And my prednisone moods? Well, they were proof positive that he loved me when he didn’t ever wrap his fingers around my throat..( Looking back, there were a couple of times i would have!)
    Then the asthma got worse. List of triggers grew every time i left the house. Mike’s wife no longer smelled of perfume, or hair products. A simple taste of some instant pudding nearly killed me and Mike gives up eating pecans. Then came the allergy testing and his first big step into caregiver. Mike learned how and then gave me 3 allergy shots, 3 times a week. The allergy shots worked a miracle and granted me a greater freedom of life than i had had in years. i didn’t at the time realize that Mike too had been granted a kind of freedom. We enjoyed that freedom, with little awareness of it’s enormity for a nearly a decade.
    Many of Mike’s steps into becoming my caretaker went past me without my seeing. As the allergy issues slowly re-presented themselves here and there. Mike started picking up the groceries alone, when i could no longer handle walking through the perfumed people, dog food, dairy, laundry soap, or personal hygiene aisles. Many, many nights out Mike lost being able to stay at the show, or have drinks with friends to my not being able to breathe, can’t stay alone. We started only going to outdoor music events, and finding other ways to get around my low lung capacity. Mike lost being a dance partner, festival freak to carrying chairs, meds and constant hydration.
    Then a little over a year ago, my immune system upped the ante, now there is RA to deal with. In some pretty serious ways Mike lost his wife a year ago,and no one noticed but him. Being a good, loving wife (near perfect) i probably should have noticed, but i wasn’t a good, loving or near perfect wife. i was, and have been a grieving, pain-filled, whiny, angry, frightened, prednisone fueled expletive. Any money that might have once gone to entertainment now goes to doctors, diets, drugs, travel to doctors, vitamins, minerals, heating pads, ointment.. So Mike lost his free time, his beer money, his weekend with the guys and in return he has had to listen to me while i cry, rant about pain, lack of sleep, not being able to wear shoes, my vanity at the deformities in my hands, insurance companies, doctors, drugs,side effects, my sometimes all invasive fear, and my anger at how these “invisible illnesses” are misunderstood by friends and family. He not only has to deal our reality, my hurt and anger when someone makes a “If she’d just tried harder…” remark, he has to deal with the remarks about him, and the ones that are said to him. And the many friends we have that do try to understand, aim the help they offer to me, not even knowing that he has had much taken from him, while being put under great financial, emotional stress while taking on more and more physical chores. And the pain in his eyes, the guilt that shows when he acts like a normal husband and doesn’t think to wash the crockpot liner, or snaps at me a little for asking for something more when he just needs to breathe or pee.
    i have always been the outgoing one, the one ready to jump in to something new, Mike doesn’t much like change. He isn’t going to go look for a support group on line, he hunts and pecks at a keyboard and wouldn’t think to ask for support in the first place. i have had a need to find something to distract myself away from RA being my whole life, it has already taken enough. i want Mike to be that distraction! So… how do i find ways to ease his burden without it being all about me?

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  • By Andrew Lumpe, PhD Moderator

    Joni, thanks for sharing your story. It is all too common once someone is diagnosed and begins to deal with the ravages of RA. And it’s a whole other story with a caregiver who doesn’t directly deal with RA but see what it does to a loved one. You obviously care about Mike a lot and want to help him. If he doesn’t do the internet, perhaps you could print up some of the pages from this website that describe the disease and want it does to people. Maybe some of the personal stories. There may be a local support group that you could get involved with. Keep lines of communication open and try not to hide how you’re feeling. Ask for help when you need it. Hang in there as it’s a lifelong journey.

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  • By Mariah Z. Leach Moderator

    Hi Joni – Thank you so much for sharing your story. Many people don’t realize how much an RA diagnosis affects a person’s partner, and most partners simply don’t get enough credit for everything that they are going through too. When I was diagnosed with RA I know it changed my husband’s life just as much as it changed mine. So I certainly understand where you are coming from. I used to feel extremely guilty about the effect my illness has on our life and marriage. But one thing that has helped to ease the guilt is that my husband and I try to think of RA as OUR problem – not just my problem. Because after all, RA isn’t my fault and RA isn’t his fault. So when we look at my RA as an obstacle that we have to work together to overcome, it can actually help us feel closer to each other and improve our bond and marriage. That’s not to say that this is always easy to do – but it is always our goal. And it is wonderful that you are looking for ways to help Mike. I think recognizing his struggle and communicating with him about it is another wonderful way to start. Best of luck to you!

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  • By BobbieMac

    I, too, have a Mike in my life. Both literally and figuratively. He’s taken over all of life’s duties for the last couple of years as I’ve gone to one dr or another trying to figure this out. Now, with a RA diagnosis (after becoming obvious), I’m in grief mode and the role he’s taken of trying to cheer me up is coming between us. I want to be allowed to scream and cry. I know that I’m hard to be around. How do we both get what we need?

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