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As a caregiver to 3 children, one of which has serious medical and special needs, I am often told to “take care of myself first.” I always respond with a smile and sometimes a laugh escapes my lips as I think about how ridiculous this statement sounds to me. If someone says this to me when I am feeling grumpy or tired, I actually get mad.
If you are a caretaker you probably understand how I feel. No real caretaker puts himself or herself first because it is impossible, at least in my experience. That being said, I do understand the need for caretakers to care themselves.
My daughter Tiara has Tuberous Sclerosis, which is a rare genetic disorder that causes benign tumors to form in the major organs. She has tumors in her brain, heart, kidneys, thyroid and on her skin. As a result of the tumors in her brain she has intractable epilepsy, which means her seizures have never been controlled through medication. She underwent a brain surgery in 2011 and ended up in the hospital for 3 months after suffering several strokes and being put in 4 drug induced comas. She was eventually released and is currently taking 5 seizure medications, a total of over 45 pills a day, just to keep the seizures to a minimum.
Because she is so heavily sedated from the medications she isn’t able to attend school and is home with me all day. She outweighs me by 60 pounds, as the seizure meds cause her to gain weight. She is able to walk and talk but is still in diapers.
In addition to her medical issues, she is developmentally delayed, has autistic tendencies and can be extremely violent. She must be watched at all times. Luckily I have someone that helps watch her from 2pm-6pm, 5 days a week, but the rest of the time she is under my eye. So you may be thinking, wow she has 20 free hours a week to rejuvenate herself? Well, if you live a life similar to mine you know that in those 20 hours, I do the grocery shopping, cleaning, laundry and cooking so I don’t really have any free time.
So how do I keep my sanity? Here are a few tricks that help me survive my life with a smile on my face (most of the time).
- Plant something beautiful outside a window you look out often. Because I spend so much time inside and I love flowers, I planted my favorite rose bush right outside my family room sliding door. All day I look at that bush and feel happy. Because roses don’t bloom all year long, I planted a dahlia plant outside my front door so I could look at it the rest of the year. Sounds simple and kinda silly, but it really helps me feel happy to see such beauty all day long.
- Eat healthy. Yes, I love cookies and allow myself to indulge in them once in a while. Well, some weeks more than others but for the most part, I eat healthy. When I eat crap, I feel like crap and it is hard to take care of someone else when you feel bad. As a result I cook most all our meals at home, avoid carbohydrates, and serve plenty of fresh fruits and vegetables at all the meals. I also don’t let myself get too hungry during the day, which can led to snacking on bad food. I always carry nuts or a granola bar with me for emergencies.
- I love fresh air and enjoy walking but many times my daughter doesn’t want to be pushed in her wheelchair for a long walk. When she is agreeable I take her on long walks for exercise but when she refuses to comply I try and do some stretching on my own while she is watching TV. A little movement always makes me feel uplifted.
- I always try and stick to a routine so I can anticipate the hardest parts of my day. Having a solid routine alleviates stress for the child and the parent. I even have a routine for when my daughter is hospitalized for extended periods of time.
- Surround yourself with positive and kind people. I don’t have any people in life who are negative or self-adsorbed.
- I always try to find humor in every situation. When my daughter threw a carton of eggs at me in our kitchen the other day I thought to myself, “at least she didn’t know enough to take them out of the carton and chuck them at me one at a time.”
- Always know it could be worse! I try to imagine how much worse my life could be every day, so I can appreciate all the good I have in my life. I literally image myself living in a dirty, run down house with no air conditioning, no grass, bars on the windows and having no money to pay for my daughter’s medications, diapers, thickening liquid or the many other things she requires to stay alive. I always remind myself to be grateful for my house, which is in a safe neighborhood, my husband and my 2 healthy girls. Everyone has something to be grateful for.
So as you can see from my examples, it is the small stuff that helps me cope with my life as a caretaker. I don’t need weekends away, fancy dinners and manicures to help me, I just need a positive attitude, beauty, humor and good people in my life.