The Difficulty of Getting Care as a Caregiver

by | Jul 8, 2022 | Uncategorized | 0 comments

mom-holding-childs-hand

Caregivers sometimes deal with significant health issues. A few years ago, I started dealing with some health issues. As a mom of four young boys, two who have special needs, I went to the doctor to try and find out what was going causing my symptoms.

“You’re a mom. You have young children. You’re just stressed. You’re a caregiver.” That was what the medical
professionals and specialists continued to tell me. This went on for years. Something was off, but they continued to be dismiss it.

Getting Answers

Eventually, through my research, my doctor ordered the specific labs that would uncover clues for what I was dealing with. The diagnosis was multiple autoimmune diseases. One of the big things that contribute to autoimmune disease is stress. “Just take some time to relax and we will keep an eye on it.” Caregivers are typically constantly on the go or always on call. Telling someone they are stressed and need to relax isn’t as helpful as it seems.

It can be hard to find time to rest with young children. Add being a caregiver and having children with significant needs, this can become impossible. Especially when there is no one around to help. You are on duty from the moment your eyes open until the moment you close them in bed at night. When you go to bed, you feel
exhausted and you’re tired just thinking about doing it all again the next day, but you would do absolutely anything to make the day a good one for your loved one.

Caregivers tend to have a hard time asking for help in general. I am a problem solver, a helper. I want to be the one that others go to and make things easier for other people because we know how hard it is to get some things done on your own.

How often does this happen to caregivers? What would have happened if they hadn’t brushed me off and didn’t tell me that it was just tiredness from my roles as a mom and caregiver. What if they had given me concrete advice or resources that were available to help families like mine?

Pursuing Healing

The beauty of this is that I have now continued to research. Continued to search for someone who would help and not just tell me to keep an eye on it and wait until it gets worse. This has helped me develop healthier habits for myself and my family. Now we focus on nourishing foods and truly caring for ourselves. I have become better at asking for help or even asking for a midday nap. I am still very much a helper, but I have learned how to say no to anything extra when my capacity has been met.

Jess Ronne, the founder of The Lucas Project, always says, “The child is only as healthy as the caregiver.” This couldn’t be more true. As my health has improved, so has that of my family. To take care of others, you have to
take care of yourself. This can be a struggle often for caregivers because we see our family members going through something difficult and we want to do everything in our power to make things even just a little bit easier for them.

Please remember, it’s ok to take breaks. You are no help to anyone if you run yourself to the point of exhaustion and illness. If you haven’t been doing this, it’s not too late to make a change. Start today, with just a couple of minutes of doing something you enjoy. Even if it is at the end of the day when everyone is asleep. You will notice the difference and be able to build on it. Goals are met not with one giant leap, but with many little steps one after another.

Finding Community

If you would like to connect with other caregivers who understand what this journey entails, please join our supporter’s group at https://thelucasproject.org/special-needs-caregiver-support-group/

All proceeds go towards provided respite care for special needs parents so they can get some much needed rest.

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