Time Has A Way Of Marching On

calendarIt hit me the other day just how long I’ve been a caregiver to my husband. I know it’s now been the majority of our marriage, but to qualify it by comparing it to other events really hit me with how long it’s truly been. It’s been more than 14 years ago that he suffered his first major medical event in our marriage. In that time, our daughter, who was 8 years old and in second grade at the time, has gone on to graduate from high school, graduate from college, and get married. His older daughters have gotten married and had children, and none of them knew Grandad when he was healthy. Molly doesn’t even remember him when he was healthy. It was evidence to me that time flies, whether you’re having fun or not.

Fourteen years. Time enough for a child to start kindergarten, graduate from high school, and finish the freshman year of college. It’s almost a decade and an a half. It’s enough time for a married couple to have the seven year itch…twice. It’s a substantial time to continually place someone else’s needs above your own. And it’s an even longer time to feel like your own life is in limbo.

I am not complaining. I made the choice willingly to be a full-time caregiver, and as it’s turned out, I’ve been exactly where I’ve needed to be given the last two major medical events Terry has endured. But as a result of my caregiving responsibilities, I’ve pulled back from community volunteer work, and haven’t become involved in some areas like I’d anticipated I would when our youngest was out of the house. It’s been an attempt to readjust what I want to do and how I want to do it.

While his health remains, and always will be compromised, he seems to have settled into a routine. If he’s going to work in the garden he does it early, and avoids getting hot at all costs. He simply cannot adjust body temperature these days and I don’t want him pushing it outside. Fortunately he doesn’t want to do that, either. But given the unpredictability of the medical events he has, there is no way for me to go back to work outside the home.

I was able to leave my job because I cashed in my retirement account. But that’s not a good financial option unless you really know what it means. What it meant to me was paying a penalty for early withdrawal. It meant a cap on the amount I’ve paid into Social Security, because nothing has been paid into the system but taxes since I did that. It did what I needed it to do in providing us an income so I could remain at home, but it did me no favors for my own future retirement. I’m no longer accumulating in my own Social Security account until I go back to work, or make enough money to begin paying back into the system.

Weighing the pros and cons of working outside the home has confirmed I am in the right place where I need to be. I do all of this knowing he can never repay the favor of caring for me in the future, but it doesn’t matter. His attitude throughout all of his medical  traumas has been outstanding. He doesn’t complain, he doesn’t argue, but I know it wears on him sometimes anyway. After everything we’ve been through, I have come to realize that he has been my purpose on this earth….my reason for being. I am here to help him while he’s still with us, in the hopes that his journey can be as peaceful as possible. When he is gone from us, I will know I have done all that was in my power to care for him. I will have no regrets.

As I review the past 14 years I would be lying it I didn’t say it was extremely difficult at times, because it was. But we do the best we can, and hope that tomorrow will be a better day…it’s all that we can do.

 

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Hooray For Another Happy Milestone!!

Nursing student MollyOn Saturday, May 10, our family reaches another major milestone: Our youngest child, Molly, graduates from college with a Bachelor’s of Science in Nursing. When she began kindergarten almost 17 years ago, it seemed like her college graduation was a long way away. But when we almost lost her dad with his first medical event, I became acutely aware of all the things I wanted her dad to be here to see as she grew up. Not only is he still miraculously here, but she has now completed most of her major life events with him as a witness to watch her grow into an adult.

I admit I spend a lot of my time on social media talking about Molly where family is concerned. It’s not because she is our favorite child. It’s not because we love her more than our other three children. It’s not because she is a better person than her siblings. It’s because she has been here with us, directly impacted by every medical event her dad has endured. It’s because she’s the one who was at risk of not having Dad help her learn to drive, or see her graduate, or walk her down the aisle. It’s because she’s the one who gave up the most growing up.

When Molly was 8, Terry survived a massive heart attack that surprised everyone, in both its occurrence, as well as his survival, given the severity of the attack. He had a sudden and major blockage from a blood clot of the left coronary artery, which feeds the heart its blood supply, and sustained significant damage to his heart as a result. After he’d been home a couple of weeks after his discharge from the hospital, I went back to work. I learned Molly was waking him up from his nap if he was sleeping when she got home from school. I was concerned she didn’t understand he needed to rest everyday, and told her to let him sleep. My concern turned to irritation when I learned it was still happening. I thought about why she would do it, and finally understood she was making sure he would wake up. She was making sure he hadn’t died.

Once I knew her motivation I had a conversation with her. I tried to be as nonchalant as possible about her potential to have to do so in the future, while explaining that if Daddy didn’t wake up she should call 911 first, and then try to call me at my office. It was uncharted territory for me to try to prevent one of our children from feeling responsibility should their dad have died while at home with him. Fortunately for all of us, that never came to pass, but she doesn’t really have many memories of him before he became sick. That colored everything a different shade when it happened.

010When she was 12, she saw him collapse on the floor at home, unable to walk. When she and I got home from the hospital that night, and they still didn’t know what wrong with him, I held her on my lap while she sobbed, afraid she was losing her dad. You don’t know how strong you can be sometimes, until you have to be that strong. It would have been easy for me to sob along with her, but I wanted her to believe that I felt he would get better and come home at some point. I held her and let her cry instead, convincing both of us he would be OK. It would be two more days before they found the patches of staph infection inside the chambers of his heart. That required open heart surgery, IV antibiotics every four hours for six weeks, and a total of 46 days in the hospital. She witnessed him in a hallucinatory state, and in the grips of sepsis poisoning when he went into convulsive like trembling. It was scary for me, but she was only 12, and it had to be terrifying.

Later that same year, he began a vomiting syndrome that was never fully diagnosed. This wasn’t an episode or two of discreet vomiting. This was body wracking, can’t keep anything down, violent retching, for most of the day. When it wouldn’t stop, I’d have to take him to the ER. We never knew when these would occur, or why, which made preventing them impossible. As Molly grew and participated in sports and community events, she became accustomed to not expecting her dad to be there. It wasn’t because he didn’t want to attend these functions; he couldn’t for whatever reason was the problem that day. She never complained once. Not one time.

Two months before her high school graduation, her dad was diagnosed with thyroid cancer and a rare adrenal gland anomaly, known as a pheochromocytoma, which was very life threatening given the surgery he needed to remove his cancerous thyroid. While her classmates were packing up and leaving to go to school out of town, Molly quietly enrolled at the local community college campus to start accumulating her prerequisites for nursing. With all her dad had been through, she knew the impact good nurses made on the quality of care a patient receives. She’s decided to become a midwife, so she’s focusing on the other end of the life spectrum.

She stayed at home for a year and a half, working and taking classes. One week after she signed the lease on an apartment in the town where she was moving to attend a university, her dad was diagnosed with stage 4 bladder cancer. It was hard for her to leave, but I was adamant that she not put her life on hold any longer. The first semester she came home almost every weekend. As he got stronger, she felt more comfortable being at school. It would be the fall semester of her senior year before he challenged the odds again. Before Thanksgiving he went into ventricular fibrillation (an irregular heart beat) that led to ventricular tachycardia (out of control, fast, and irregular heart beat) causing his defibrillator to discharge and shock his heart 21 times in less than 4 hours. What heart function wasn’t destroyed by his heart attack and staph infection was certainly diminished after that event. Of all of his medical events and emergencies, that one was the worst. It was like watching someone you love as they’re being tortured. He knew when his defibrillator was going to go off and shock his heart, and there was nothing we could do for him but watch as it happened.

View More: http://applewinefilms.pass.us/hessOne of the bright spots during the last couple of years was that Molly had gotten engaged. Her original wedding date was for one week after graduation. She changed her mind, and at Christmas decided to marry on her dad’s birthday in September instead. The day was beautiful, the sky was clear, and Terry felt good that day. In hindsight, I am so glad she did it when she did. We have pictures and wonderful memories of the perfect day, and best of all, we were all together for a gloriously happy event. It doesn’t get much better than that.

So, on this final week before graduation, this is dedicated to Molly. I am so happy her dad has been here for the big events and to be a part of her life as she’s reached so many of her milestones. As she achieves her goals and lives the life she deserves, I want to thank her for growing up to be an incredible person. All of the professions in the world, and she chose one based in service, and the care of others. We couldn’t be more proud.

 

 

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Tired of Being the Little Red Hen

little red henWhen my brother and I were growing up, we used to laugh when our mom would ask who wanted to help with whatever it was she was working on, and no one wanted to help. We both knew the words “Well, I’ll just do it myself!” were sure to follow. As she is a redhead, we liked to the comparison to the story of the little red hen. If you’ve forgotten, no one wanted to help her mill the wheat, or make the bread, but everyone wanted some of the finished product. As a kid, that comparison was funny. As a wife and mother doing it all, it’s not so much anymore.

For the now 14 years of Terry’s health problems, I have done it all myself. Except for his 46 day hospitalization in 2004, I’ve spent almost as many nights in the hospital with him as he’s been there. I make his appointments, accompany him to them, order and pick up his meds, fill his pill minder, handle all of his health insurance issues, empty puke buckets and urine bags, cook, clean, transport, encourage, remind, console, advocate for, fight with doctors on his behalf, and generally do everything he needs not listed. For much of that time period, I was working full-time, and raising our daughter, who was barely 8 when the health problems started. I knew I needed to be the one to take care of him so I wanted to be the one taking care of him. Who knew that would turn into me being the little red hen this time around?

While there were periods of time when he wasn’t doing well, and couldn’t drive or do anything around the house, for the most part he wanted to be as active as he could be. I’d invest a lot of time after a medical event, and back out of the time spent as time went on and he started getting stronger or better. That’s not happening this time. It’s been about three months since he came home from the hospital and his ventricular storm. He’s not getting better and he’s not getting stronger. And it’s discouraging to us both.

But the real problem is he is still having tremendous anxiety about the way he is feeling. If he feels his heart rate is different, or he’s feeling dizzy, I need to be here with him and for him to make sure he doesn’t get so wrapped up in how he’s feeling that he unknowingly lets it snowball until he does have a medical problem. That means I can’t be far from home. That means the things I’d like to do and the places I’d like to go are on hold. Still. That means the worse he feels, and the ability to get a break from it all are farther apart than ever before.

It’s hard to ask family who haven’t offered to help to do so. It’s even harder when you do ask and are ignored. And believe it or not, that’s happened. When you’ve done a lot to help someone and they turn their back, it’s hard not to feel dismissed. I keep reminding myself that I’m here because I want to be, and in the long run I will never regret the sacrifices made to be with him. Others may have some struggles with their conscience down the line…their choices; their consequences. Mine will be clear.

For now I guess I just have to dig in a little deeper and know I’m in it by myself for the long run. I’ll be the little red hen, and I’ll do it all myself. Just wish there was a tasty loaf of bread or something tangible waiting for me when this all over…but I know how it ends. That’s why we’re trying to avoid that.

 

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New Normal Is No Fun

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It’s been a tough couple of months since Terry’s discharge from the hospital after a ventricular storm caused his defibrillator to discharge 21 times in less than 4 hours. The damage to his heart was pretty substantial, and I had … Continue reading

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The Heart of the Matter Really Matters

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Our medical journey began with Terry’s damaging heart attack almost fourteen years ago. He seemed otherwise healthy and was active, and we didn’t see it coming. He had open heart surgery four years after the heart attack when a staph … Continue reading

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The Joy of Coming Together For the Good Stuff

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I’ve let most of the summer get away from me without posting. Much of that has had to do with Terry being very stable with his health where he is now. For the most part…a recent blood workup showed the … Continue reading

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Learning Limitations

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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 … Continue reading

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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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