Challenges of Being Your Partner's Full-time Caregiver

Caring for a loved one with a disability like spinal muscular atrophy can be both a rewarding and challenging experience.

One of the primary challenges of being a full-time caregiver is the physical demands. Mike’s condition is progressive so the spinal muscular atrophy has weakened his muscles. This means I need to provide him assistance with transferring from one place to another, bathing, dressing, and preparing his meals throughout the day. These tasks can be physically demanding.

Emotional toll as demanding as the physical toll

The emotional toll of caregiving is another challenge. I love Mike and watching him struggle throughout the day saddens me. I have never met a more resilient man. He handles himself with such grace and dignity. I still don’t understand where he finds his compassion for others while he deals with this disease.

For many, a financial toll, as well

One area that I’m lucky in is that I get paid to be Mike’s full-time caregiver. Unfortunately, a lot of other people don’t have this benefit. Taking care of a loved one can limit their ability to work outside of the home. Caregivers may also need to make sacrifices in other areas of their life.

This is something that I thought would be an issue. I have mentioned that I have been dealing with a personal ongoing tragedy. This has been a life-altering experience and kind of negates the sacrifices I would have had to choose. Mike has been my rock and I am lucky that he has been there for me. So this is not something I deal with as Mike’s caregiver but it is something other caregivers need to consider.

Lack of understanding from family and friends

What has been a surprising challenge is the lack of understanding from others. Some of my family and friends think that I am not working full-time. They see Mike as my partner which is good on one hand. However, since I don’t get up and leave the house everyday, they sometimes don’t understand that I am actually working taking care of Mike. It’s something that a lot of home care workers experience. People think I can drop everything and help them at their whim. It doesn't work that way.

With self care, caregiving a rewarding experience

It’s crucial to prioritize self care. Taking care of your physical, emotional and mental wellbeing is essential to sustain yourself in the long run. Seek support from friends, family or even support groups. Keep an open dialogue with your partner. Make sure you express your needs back to them. This type of relationship requires a lot of give and take from both the caregiver and the one who needs care. Doing this will help you both. No one wants to feel resentment and with proper dialogue that can be avoided.

Despite the numerous challenges, being a full-time caregiver for a partner can be a rewarding experience. We caregivers often develop a deeper bond with our partner. Caregiving has also provided me with new skills, taught me resilience and provided personal growth. Providing Mike’s care has given me a sense of purpose and fulfillment. Those things are priceless. Just remember to keep working as a team!