The Exhaustion of Caregiving

I have myasthenia gravis (MG) and over the past year I have been a caregiver to my husband throughout several illnesses, which included taking care of him while he was dealing with methicillin-resistant staphylococcus aureus (MRSA) in his foot, leg, and bone. MRSA is a very serious infection. It can easily be spread to those close to you, and it’s difficult to control. This has required multiple hospitalizations and surgery.¹

I want to share my experience because you never know when the tables may turn and you become the caregiver. And, as someone living with MG and a compromised immune system, I had to be extra cautious when caring for and living with someone with MRSA. In this article, I share what it was really like being the caregiver, and how I managed the risk of infection while caring for a loved one with MRSA.

Caregiving is exhausting

I’ll provide you with a little history. Last March, I became seriously ill and needed a pacemaker. Two days after my hospital admission, my husband fell and fractured his ankle in 4 places. The day after my discharge, he had surgery on this leg. A couple weeks later, we found out he had 3 different infections in the wound, with the most serious one being MRSA.

Although our children and grandchildren were available to help (and they really came through and helped us where we needed it most), I tried to handle things the best I could myself and I didn’t want to risk them getting infected. But after many months of caregiving, I was mentally, emotionally, and physically exhausted.

His illness took quite a toll on both of us, and for the first time in our almost 50 years of marriage, we were both experiencing short fuses with each other. My disposition had gotten so bad, he finally had to tell me and I had to readjust my temperament. In no way did I mean to make him feel bad about his predicament, but I had just been so tired, overwhelmed, and worried about my own care and health, too.

It wore me down

Although my MG was pretty well-controlled, I still would tire easily. I was trying to keep the house clean and safe, give him intravenous (IV) antibiotics 3 times per day, keep up with all the other housework, and so much more.

I was focused on trying to take care of my husband and do what was necessary around the house, but we were both stressed out to the maximum. I use a power chair for MG, and my husband was not allowed weight bearing on his leg and required a wheelchair. I had to adapt a lot of things because of his handicap and both of us using wheelchairs.

I had a lot of emotions. I was scared to be handicapped and caregiving alone. I cried, I prayed for my husband’s welfare, I cleaned, and I tried to stay busy, so I didn’t have to think about everything. But even that was wearing me down.

Throughout it all, I had not been able to see my own doctors. I needed a prescription for a new power chair, I was running out of my MG medication, and I also needed a referral to a new neurologist.

Managing the risk of infection

On top of all the stress, one of the precautions I had to address was managing the drainage from my husband’s wounds. Because of the MRSA, I had to disinfect everything. I did not want to risk infection, especially because of my MG. There were a couple of ways I managed the risk of infection while caregiving.

Wearing gloves

When caring for my husband’s wounds, cleaning the area, and administering his IV drugs, I always wore gloves. When removing the gloves, I peeled them off inside out so the dirty part was inside. And I always washed my hands well with soap and water before and after working with his wounds.

Using disinfectants

There were times my husband’s wound had drained and broke through his bandages, so I spent time researching the best disinfectants to use in the home. I wanted to make sure I cleaned any area that I thought he may have contaminated. Some of the products I used included:

• Microban spray for surface cleaning
• Lysol Laundry Sanitizer
• Lysol Disinfectant Spray

In addition to cleaning our clothes and bedding, I also used the Lysol Laundry Sanitizer for anything made of cloth (like our carport and sofa) by mixing it with a carpet shampooer. I used Lysol to mop the bathroom floors, too. And anything that made contact with his wound that could not be cleaned was thrown in the trash.

Do not forget to care for yourself

For those with MG, caregiving can take an extra toll, especially when trying to prevent infection. The ordeal reinforced in me that I have to take care of myself first so I can help others.

If you are ever in a situation similar to this, don’t forget about yourself and don’t let others forget that you also have needs. Our loved ones don’t know what we are going through unless we tell them. Although I usually keep a lot to myself, I learned to finally communicate some of that to my loved ones.