The Caregiver

Written by: Beth Hudson LBKA

BH (Better Half) and I are exploring our new winter home in North Central Florida. Small town, close to Gainesville, Cedar Key, bike trails and such. We decided to find a breakfast restaurant this past Saturday and found a local that looked promising. While waiting for our food, I asked him how he felt about being my caregiver, which for him, is a role he will have until I die.

When I first came home, after a year of hospitalization, rehab, and skilled nursing facility stays, our first few days were chaotic - and that’s putting it mildly. During my absence BH, on the advice of the PT/OT home visit, had taken up all the area rugs, installed an electric stair chair to the second floor, and with incredible neighbors and friends, built a ramp to the front of the house and replaced our very aging deck on the back for total accessibility, and a second egress in case of an emergency. Lastly, fencing in the backyard, as I was not able to walk, much less walk my dog.

Absolutely everything I did, from sunup to sundown, had to be relearned. As Tom Hanks said in Apollo 13, “Houston, do we have a procedure for that?”  Although I had learned how to do many things in rehab, you all know that it is different at home, and adjustments must be made to fit your living situation. Luckily, we are quite pragmatic when it comes to solving problems, so those procedures became, in my mind, anyway, a challenge to implement. We would decide if it worked or needed tweaking. Those first few days were tweaking-ridiculous. And we laughed about some of the absurd things we tried to work out. But from absurdity, we learned.

On top of that, I was still on dialysis - Monday, Wednesday, and Friday. We left the house at 5:30 pm, arrived at the center at 5:45, and the machine was humming at 6. Three hours later I was removed from said machine, weighed, and on my way home. He always had something for me to eat in the car. (I learned the hard way that if you eat a meal before dialysis, it makes you very sick to your stomach, and well, you get the picture.) By the time we got home and were in bed, it was 10 pm. BH had to get up at 4:45 for work. I was exhausted from the procedure and he was exhausted from lack of sleep.

Those early days were very difficult on him both physically and mentally. He had already spent a year at home, by himself, taking care of EVERYTHING. When I got  home, he had to take care of everything plus me. I don’t know how he did it, with grace and a smile, always. I still had my dead leg, which I fitted into an AFO every morning. A visiting nurse came daily for a month and then tapered off for the next six months. In home PT/OT three times a week for three months. And a licensed nursing assistant to help with bathing and food prep twice a week - all while he was at work. But the second he walked in the door, his caretaker role began.

My immediate goals were to take care of my dressing and bathroom needs, feed myself breakfast and lunch, make BH’s daily lunch, cook a simple dinner, and do laundry. My long term goals were to do all the household chores - I hated the fact that he came home from work (very active job) only to do more work. 

While I was hospitalized, he never worried about my care. But when I got home, he constantly worried that something would happen to me while I was alone. This came to fruition ten days before school ended (he’s a teacher) when I made a rookie mistake and fell out of my wheelchair.  Think, “I’ve fallen and I can’t get up!” Another hospital stay for that one! Luckily I was not seriously hurt, but it took an emotional toll on him.

Emotionally and mentally, he struggled, which ultimately spilled over into his work. Both his colleagues (a great support system for him) and his boss urged him to get therapy. I helped him find someone, and he met with her regularly for two years. He grew up with the “tough guy” mentality from his family, but he recognized that he needed help. 

I asked him at breakfast what was the hardest part of being my caretaker now, as there are some things that I will never be able to do by myself. His answer surprised me. “You are inconsistent about needing help. One day you will do something yourself, and the next day you will ask me to help you do the very same thing. I feel like I’m damned if I do and I’m damned if I don’t.” He is absolutely right, and I will now try to be more consistent. Our MO is that if I don’t ask for help, he lets me struggle to do whatever I’m attempting. If I need help, I’ll specifically ask him to help me. Doesn’t work 100% of the time, though - work in progress, as always.

We need to give them breathing room. I encourage my husband to go out with his buddies, to ride his motorcycle, and do things without me that he enjoys. A couple times a week I walk to the rec hall and work on a puzzle to give the man some space. These have kept him on an even keel. If we do hit a bump in the road, we don’t let it fester - we talk about how we feel and work it out together. This takes practice - after 42 years of marriage, we’ve gotten pretty good at it. 

None of us are hermits. We need to have someone in our lives to help us when we need it, just as we are willing to help others. Everything is difficult at first, but as our journeys progress, and our needs change, so do those of our caregivers. 

We will be full-timers in our RV for up to two years. My needs in this living arrangement are different from a house, and we have adapted. What do I dislike about it? I still can’t walk the dog; my husband has to do it every morning. I wish I could do that for him a few times a week and let him sleep in. There are two lights in the rig that I just cannot reach - he must turn them on and off for me. Getting to the bathroom during the night is a pain in the ass, and I know I wake him up every time. Outside, our compartments need two hands to open them, and the latches are so far apart, that I cannot open them and keep my balance - “Honey, I need some help, please!” is a very common utterance on my part. 

His care is an integral and continuous part of my journey. He chooses to care for me not because he has to, but because he wants to and he loves me. I care for him for the very same reason. If you have a caregiver in your life, nurture the relationship and keep communication honest and open. 

If your caregiver is a hired person from outside your circle of family and friends, then you must build a relationship with them. And if you don’t “click,” just like firing a prosthetist, you must find a compatible person whom you can train to take care of your needs - empathetically, compassionately, skillfully, and professionally. Taking good care of your caregiver, no matter how you do it, will help your caretaker take the best care of you.

And remember: You never know how much strength you have until you are called upon to us it.