Taking Care of Myself as Mike’s Full-Time Caregiver
In March 2020 I became Mike’s full-time caregiver. This was a big decision and one we discussed for a long time. It was the beginning of the pandemic and Mike’s parents. His mom and dad were nervous about having people in and out of their home. Up until that point, Mike was living with his parents and they provided him with the majority of his caregiving needs as an adult with type 3 SMA.
We made the decision to move in together and I would assume the role of his only caregiver. This was something that I truly wasn’t prepared for, but we both wanted to see if it could work.
Concerns about burnout
Mike was really concerned about burnout. He has a few friends who require full-time care and they warned him about caregiver burnout.
A plan in place to care for my needs, too
What I adore about Mike and, quite frankly, find amazing, is how he’s always thinking about my needs. He is always encouraging me to get out by myself during the day and go do something for myself.
He forces me to take care of my health, both physical and mental. I have always been someone who feels guilty about indulging myself with luxuries. I especially feel guilty leaving Mike by himself for an hour or two. Mike doesn’t let me feel guilty. He also says it’s good for him to have his alone time.
Massages help reduce the physical strain
Massages are the number one luxury service that I do in order to take care of myself. Lifting Mike around 10 times a day takes its toll on my back. My muscles can become very sore and stiff. A good massage once a month definitely helps. I have tried using a chiropractor but I haven’t received the same relief as I do when getting a massage.
Yoga has also been very good for me. I have been into yoga since I was a teenager. I used to be a regular at the local yoga studio. Having that community is important and there is a connection that is made when doing yoga in a group setting.
Yoga for both of us
Unfortunately due to the pandemic a lot of yoga studios closed. There were no in-person yoga sessions being offered where I live. Mike and I came up with our own routine. He sits a lot during the day. Sitting causes a lot of stiffness. When we moved in together I started helping Mike with yoga poses. He has gained a lot of flexibility over the last few years. After I am done helping me he then coaches me.
It can be hard to perform a yoga session on your own. While Mike can’t actively participate, he won’t let me move on with our day until I go through my regimen of yoga poses. Keeping my body as flexible and as stretched as possible helps me throughout the day. Hopefully it’ll prevent the likelihood of a serious injury.
Mike takes care of me, too
Mike has a knack to read me and he’s good at knowing when I need to get out and spend a few hours by myself. It’s hard to be with anyone 24 hours a day. However we keep an open mind and are always communicating. That helps me the most.
Are you a caretaker for an SMA patient?
Which best describes you?
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