Caregiver Perspective: I Just Keep Going and Going and Going

In the past month, I have been taken to the emergency room twice with severe abdominal pain and vomiting. Each time they ruled out appendicitis (thank goodness), but obviously something is wrong. At this point, they believe I have two locations in my intestines that are infected which is causing the pain, so I’ve been put on two very strong antibiotics that may kill me before the ten day treatment is up. Each day I struggle to keep going. Each day I battle nausea and the discomfort caused by the antibiotics. Each day, I have to find a way to get everything done that Lynn requires because if I don’t, it won’t get done.

Others have their own responsibilities

People tell me to call if I need help and I have, and they have, but they can’t be expected to stay here 24/7 while I recover. They have to work. They have home responsibilities. They have their own challenges and illnesses and life to endure. It’s not that I don’t have wonderful people to support me; I do. It’s just that there is so much that must be done to keep our routine going.

Continuing to work

I’ve had people tell me that I needed to get someone to come in here every day to help me. I often have someone here during the daylight hours. His sister and Mom are here on Mondays. He has an assistant who comes 2-3 days a week for six hours to feed him and do his typing for him. We have a church friend who often comes on the other weekday for a few hours to type for him. But while they are helping him, I’m doing my paid job. I have to have an income or we won’t be able to survive on his social security benefits. I’m 58 and too young to get full retirement, so not working is not an option. Therefore, I don’t rest while the help is here. The help allows me to do my job so I can work less hours in a day trying to stay on top of work demands.

The cost of outside help

Hiring outside help is too expensive. He needs skilled help, not just a companion; therefore, the cost is about $50/hour. When I really need the help is first thing in the morning to do his morning exercises, bathroom routine, hygiene/dressing, and feeding – about three hours of work. I would have to pay them for four hours even if they don’t do but three, so that’s $200/day for the morning. My night-time routine could use some help too, but it’s five hours: getting ready for the next day (preparing meals, medications, replacing what foods are running low, cleaning the kitchen, etc.), then his medications, his bath/shower, dressing him, and letting him nap while I eat dinner and shower. Then I come back to get him up from bed, get him comfortable in his wheelchair and feed him dinner. Afterwards, it’s time to put him to bed and that typically takes thirty minutes. I could cut out the hour for my shower and dinner and would have four hours for a caregiver so that’s another $200/day for night time. Four hundred dollars a day times seven days; well, that’s a lot of money ($2800) and we don’t qualify for assistance or help from insurance. In a year we would spend $145,600. That’s more money than we make in a year. So hiring help is out of the question. I could get less expensive help but then I would still have to do the intermittent catheterizations and the more difficult care.

Short on sleep

The two nights I came home from the hospital, I immediately had to start caring for him. He needed his pills set up for the next day. He hadn’t had a bath the night I was away either time, so I needed to give him a bath. He needed dinner and meals prepared for the next day and he had to be fed and put to bed. Our kids offered to help, but one of them was anxious to get home because it was getting late and they had to work the next day and the other one has a special needs child that requires a lot of work as well. It’s not fair to put more on them than they already have if I can do it. And I could; just slower than usual. I would do a bit and lie down over and over till it all got done and I got to bed around 4 a.m. (I usually get to be between 3 and 4, so that’s not much later than usual.)

My time in the hospital

While in the hospital, our children offered to come stay with me so I wouldn’t have to be alone. I declined that offer because I WANTED TO BE ALONE. I wanted silence and lights out and the ability to sleep when I wanted. I was sick but I was also receiving a great gift of peace and quiet as I waited for tests to be done. I didn’t have to constantly listen out for, “Hey, Sweetie. Can you come here for a minute?” and we all know, it’s never just a minute.

Have to keep going

Caregivers can’t just lie back and heal; just like Moms or Dads can’t. When someone is counting on you for their survival, you have to keep going. Many MS patients are also caregivers, and I don’t see how you do it because this has been a very difficult week for me trying to keep going while sick, and you all never get a break. I assume you keep going the way I do— through God’s grace and mercy and through sheer will-power. For me, my antibiotics are done in three more days. I sure hope once my gut heals from the abuse of the cure, I will feel better again. But, until then, I keep pushing through and keep caring.

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