Caregiving With a Disability

Hello and welcome! I hope your week has gone a little more smoothly than mine! If you have escaped this years’s flu bug so far, consider yourself lucky. It’s a bad one. 

I was just coming off of helping my husband Jamie through a minor shoulder surgery in the days before Thanksgiving. On top of that he caught the flu, and so it was a double whammy for him. Probably the top anxiety producer for me at this point in my life, is when there is a need to physically care for someone in my life. It causes an all out anxiety attack, and I’m not sure how to fix that. As someone with a disability, I unfortunately can’t wave a magic wand to suddenly make myself more physically capable, and make my body do things that it normally can’t, even when I so desperately want to. When a person in my life is sick or hurt, my motherly instinct is to want to take care of them. Problem is, I’m often just not physically capable of doing so. The guilt, and to be honest shame I feel surrounding this topic can be all encompassing. I often write about things that I’ve struggled with and learned to overcome throughout my life. That’s not the case here. I’m currently struggling with this one big time. 

How Muscular Dystrophy feels, mentally 

One thing I knew was not an option if I was going to get through this, was not bringing my scooter in the house so I could preserve the precious energy I do have. I don’t typically have it inside because I’m able to function in my home, and hold onto furniture and walls when I need to, to help me walk or balance. I knew with all the extra running around and getting Jamie things he needed, that I was going to have to have it. It has been a life saver this past week.

So I was dealing with his surgery recovery, the illness, and the Thanksgiving meals. I was trying to pull my weight in that area as well, and contribute like everyone else was. My normal routine is very taxing on my body, so when unexpected or change in the routine is required, like I said, I get anxious. I know what will happen. I will be weak and exhausted, and more prone to falling. My mind will long to do much more than my disabled body will allow, and the frustration will come. Somehow, I always survive like the rest of you. We keep going. Thanksgiving came and the boys and I headed to the different family celebrations, unfortunately leaving Jamie behind due to his illness. I felt completely exhausted, but gosh we have such great families and so much to be grateful for. That overrides that feeling of complete exhaustion in the moment for sure.

The next morning I woke up sicker than I have been in many years. Despite all the hand washing, disinfecting etc I had not managed to escape this awful illness floating around. I was down for the count for a solid 5 days, and I’m still not myself. It seems like everything is falling behind and the looming dread of somehow having to pick myself up and tackle all that lies ahead, is definitely overwhelming. This illness did a number on my muscles, and I’m currently still using my scooter most of the time in the house. 

We can’t control illness and setbacks in life. We can’t control our aging bodies, or the aging bodies of our loved ones who also need extra help as they age. I have to help where I can, and the hardest part to come are some very honest conversations about what I’m capable of and what I’m not, while still maintaining some kind of balance in my own life. Conversations with others, but also getting real with myself. It’s really hard knowing I can’t be that physical caregiver I’d like to be. It feels like I’m letting people down in my life that I care the most about, and who have always been there for me. 

You want to return the favor. You don’t want to have to say, “I’m so sorry, I’m not going to be able to help you.” That feels crushing to me to have to say that out loud. It’s feels really vulnerable and raw to have to admit that. I believe that part of our fear of being vulnerable is that we are scared to death to face our own truth, and also we are scared to death that when others hear our truth, they won’t receive our vulnerabilities in the way we want them to, which is with the utmost gentle care and compassion. 

Getting the humble courage to face what lies ahead, as far as being a caretaker for others in my life is still a work in progress. I don’t have this one figured out, but I’m working on it. I know it’s not going to get easier as my body continues to become weaker due to aging and my disability progression. I felt like I needed to share this struggle in case you too are faced with this situation in your life. We are all doing our best, and continuing to live in gratitude and trying to focus on what I can do, helps. Stay well! 💚