About Caren Rugg

I am a vocal advocate for those I love dealing with the medical community. I spent 18 years working at a not for profit Area Agency on Aging, and have experience with developing programs to meet needs, and working with family caregivers. I've been a caregiver since February, 2000 when my husband suffered a massive disabling heart attack. He's gone on since that time to have numerous health concerns. I think I have a valuable viewpoint, having been on both sides of the family caregiver equation. I understand the programs and resources out there, but I also know what's sorely lacking. I hope to be able to share my experience and insight so others can find the answers they need.

Learning Limitations

My body has begun a full rejection of the workload it’s been put through over the past couple of weeks. I’m starting to realize the hard way I may have to do things a little differently in the future…and I’m not liking it very much.

Last year we went straight from winter to an unusually dry summer, and it was an incredibly difficult year to grow much outside. We lost some trees as well as some perennials. This year has been a bit of a late spring, but it’s been more springlike than in several past seasons with rain and cooler temperatures. As a result, I’ve taken on some extensive outdoor projects including moving and rearranging all of the rocks (big ones…heavy ones….dirty ones) out of the big rock garden, and some brick work. I’ve been digging and stooping and bending and pulling and hauling and my body has stopped in defiance to the physical stress it’s been subjected to the past couple of weeks. I’m reluctantly accepting I may have limitations.

Three years before Terry’s health issues began I was diagnosed with Rheumatoid Arthritis. Most people hear the arthritis part of the diagnosis and assume it’s just another version of sore and inflamed joints, like Osteoarthritis, which I also have. But it’s so much more than achy joints, and when I’ve pushed my limits my body is in full control of whether I can move or not. In most relationships, a person with RA usually gets preference for the easy side of things, as stress and physical demands can set off a flare of symptoms. When the other person in that relationship has life threatening events happening on a regular basis, however, RA takes a back seat.

Rheumatoid Arthritis in an autoimmune disease. My body is literally fighting against itself, with my immune system in constant hyper overdrive. It’s a disease that causes inflammation throughout the entire body, and as a result impacts heart and other organs’ function and abilities. It attacks the fluid in the joints of my fingers and feet and knees and elbows, treating it as a foreign substance, and dries out the natural lubrication in my eyes. RA is a progressive and degenerative disease and the most people can usually hope for is to not have any further damage. It cannot be reversed. The medications I must take destroy my stomach and cause vomiting and nausea and potential damage to my liver. When I started treatment, the first drug utilized began its existence as a chemotherapy. There are literally days when I wonder whether the disease or the treatment causes me more problems. It’s a pointless debate to have because without the drugs I take to control this disease I would probably not have the ability to get out of bed.

I’ve tried not to let my diagnosis be the defining issue about who I am. I know I’ll never be a runner but that’s alright. I can ride my bike. I can still walk well (shoes are an incredibly important investment when you have problems with your feet!) so I park away from where I go and walk it in and out. I know my feet will never look good again, but they still work, so I’ll keep using them. Part of why I’m suffering now is because there’s a fine line between not doing enough and doing too much. When you’re stiff and sore the natural inclination is to not move and let it feel better, but the action that actually helps is to keep moving and keep loosened up. Well, I’ve kept moving but I didn’t stop when my body was telling me enough, and I’m paying for it big time.

Terry was able to help me two nights when I’ve felt the worse. On Monday, everything hurt, even taking a shower. He fixed dinner so I could let my body start to recuperate. On Tuesday, after not working outside but working hard inside, my left shoulder began to freeze up and hurt. By 5:15 in the morning the next day after not being able to sleep at all, he got me a heating pad and ibuprofen. None of those actions were major, but they were things I could not do for myself when I needed help. I’ve been so focused on Terry and his needs over the past 13 years that it’s been easy to ignore my own physical situation. Since I know the likelihood of him being there to help me in the future is slim to nothing, it really caused me to start thinking of my own future when I’m alone.

Will I want the demands and pressures of maintaining a yard and all the work that goes into it? Doubtful. Will I want a large house that takes a lot of maintenance and work to keep it up? Definitely not. Will I be willing to accept help from those who want to help me? I hope so…but being independent and a caregiver for so long makes it hard for me to count on others. Maybe in the near future a cure for this debilitating disease will be discovered and this whole discussion will become moot. I can only hope.

For now, I’m going to be grateful for the cold front moving in bringing rain, so I can stop looking out the windows at my unfinished projects I’ve had to temporarily abandon. I’m going to give the next couple of days to getting my mobility back. And I’m going to listen when my body says it’s had enough. We are the best protectors of our own health if we simply listen to ourselves. For now, I’m going to try listening a little harder. My future depends on it.

 

 

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Doing For Others As We’d Like Done For Us

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Terry is nine years older than I, and his mother was already a college graduate and 30 years old when she had him. My grandmother and mother had both married young, and my mother and I were each firstborn children. … Continue reading

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Appreciating the Problems You Know

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A friend of mine from high school has come over to the house a couple of times, and has the interesting side effect of causing us to appreciate the situation we live with and know. He’s a paraplegic in a … Continue reading

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Reaching Anniversaries and Milestones

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We reached the 13th anniversary of the heart attack that caused Terry’s disability this week. Some have said they don’t understand recognizing an anniversary like that, but each day between that event and now is a day longer than we … Continue reading

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When Does Grief End?

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A good friend of mine from high school has been a family caregiver for many years. Her children are grown and gone from home, so she spent many long months driving a couple of hours to stay with her mother … Continue reading

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More Time For Making More Memories

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I have been delinquent over the past few weeks. It hasn’t been for lack of interest, but rather, well, I’m not sure. We made the anniversary of the diagnosis of stage 4 bladder cancer, and with that recognition we moved … Continue reading

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Getting One More New Experience

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Last December Terry’s niece, Kaci, got married down in Florida. We had tickets to fly down and desperately needed the escape. The wedding was occurring just weeks after his diagnosis of stage 4 bladder cancer, and we needed to have … Continue reading

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The Highlights of the Hard Life

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We’re coming up on the anniversary of Terry’s last major diagnosis. The call from the doctor informing me the bladder cancer was aggressive and stage 4 was that blindside, never saw it coming kind of call you never forget. It … Continue reading

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Perspective on My Perspective

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We’ve dealt with Terry’s health issues more years out of our marriage than not. We’ve faced life threatening events, scary diagnoses, and disability. It’s been difficult and life altering, and I know the day is coming when I tell our … Continue reading

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The Undeniable Stress of the Unexpected Events

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I was humbled the other day by my six pound cat. Walking into the kitchen at a quick pace combined with him running through my feet led to me hitting the kitchen floor. Hard. It happened so fast I didn’t … Continue reading

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