Staying Healthy as a Caregiver

As parents, we all know the value of taking care of ourselves.  As a parent of a special needs child it is even more important.  The physical, emotional, and mental demands can easily cause burnout if we neglect ourselves.  I have learned a hard lesson with this over the last year.

For over 10 years, I was blessed with great health and strength as I cared for my two sons.  Due to the progression of Duchenne Muscular Dystrophy, their needs only increased over the years.  As their needs increased, my free time became more sparse so I had to make an effort to make the time count.  I tried getting out once a week to my favorite coffee shops or the bookstore to enjoy my favorite novel, going for walks on the River’s Edge Trail, or reading the Sunday paper with a cup of freshly brewed coffee.  I learned to cherish the small things and I still do.

I was diagnosed with Cervical Dystonia two months ago and for the first time ever, I was unable to care for my son.  It was a very painful, humbling feeling and I am thankful my husband did most of his care.  I have learned a lot going through this experience.  I learned that it is far easier and not as expensive to prevent illness than to have to heal from it.  Dystonia is genetic and it is possible that I may not have been able to prevent it, but like many illnesses it can be overcome.  I wanted to share some simple, yet powerful steps we can take daily to stay healthy and have the energy to keep up with the sometimes overwhelming demands of caregiving.

For many years, I got up well before I needed to get the boys started for the day.  Before Christian passed away, it took 3 1/2 to 4 hours to get them ready for the day.  It was far easier to accomplish this on a daily basis when I knew that I at least did my personal care and took some time for myself already.  This time can be spent doing the things we enjoy such as sitting quietly with a cup of coffee, reading the paper, in prayer, listening to music, or exercising.  Every afternoon, I would lay the boys down for 30 minutes of rest time from their wheelchairs and take that time for a cup of tea and a good book.  If I had extra time before preparing dinner I would use that time to write a letter to a loved one, send a greeting card, practice playing the piano or sit outside in the sun and watch the birds.  It is amazing how energized I would feel after taking even 20 minutes to read a book I enjoy.

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This is the last photo taken of Christian and me together.

After losing Christian, I lost my way.  All of a sudden I had all of this time I never had before, and for a long time I felt guilty for trying to do something for myself.  I have since realized that it is an honor to Christian’s memory to pursue my dreams because he never gave up on his.  Christian read books up until the last 2 weeks of his life.  He tilted back in his wheelchair, turned his head sideways on his headrest, and read on his iPhone.  We all have gifts given to us from God and if we do not invest in them, we are throwing them away.  The world ends up not being as wonderful as it could be with our gifts.

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Christian won an award in high school for his excellent work overcoming his disability to create art.

Pursuing our dreams and goals also encourages our children to never give up despite their physical limitations and it also instills some normalcy into their daily lives.  We have more energy to enjoy life and we become strong inside so we can better face the uncertainty associated with complications from the diagnosis.

Please share some ideas you may have about taking care of yourself and enjoying life to the fullest as we care for our loved ones.

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Skin cells

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Today I started writing in a brand new journal.  Even though I had a few pages left on my previous journal, I just had to start fresh in my new one.  I am certain that I am not the only one who is trying to figure out what my new year’s resolutions will be.  I want to call them goals instead.  When I think of resolutions, I think of someone wanting to lose weight, quit smoking or give up drinking coffee (over my dead body – hah!).

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I read an entry in my devotional, Faith in the Valley by Iyanla Vanzant, and it resonated with me.  She said that our skin cells, our hair and other parts of our body are not the same parts that we had a week ago, a month ago or a year ago.  Without our intervention, our physical bodies are ever-changing, not always the way we want them to either.  (I find more and more gray hairs every week.)  Iyanla said that one thing that does not change on it’s own is our mind.  Do we have the same attitude and do we have the same thoughts that we had years ago and have they held us back from the life we truly deserve to live?  In my case the answer is yes.  What if we decide to be more of who we are, take better care of ourselves, love ourselves and others, and express more kindness and gratitude instead?  Once we do these things, wouldn’t that make it easier to lose weight or eat healthier?  Maybe it’s better to start within.

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Today the sun was shining and I felt blessed to have a day with my family.  What are my hopes for 2014?  For my oldest son to be in less pain from his MD, that perhaps we will find good help with my sons and that we would love each other just a little more every day.  I hope to post more in my blog, read more books, do more crossword puzzles and listen to more great music on my new turntable.  I wish you all the very best life can offer in 2014!

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The early bird gets the worm

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How many parts of our days are really quiet? No TV, loud music, phones ringing or people talking. Unless you live in a remote part of the countryside or another planet, there is not much silence in our daily lives.

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Silence. Some of us long for it, and some of us fear it (my thoughts can drive me nuts at times). I long for it and I have for years, especially as my sons’ care has become more demanding. I use the hours of the early morning to sit in silence while I sip my fresh ground coffee. I try to make a conscious connection with God as I pray and read His word. In the summer, it’s nice to feel the cool air on my skin before the sun comes up and heats it all up. I used to hear a bird, a killdeer, every morning at 4:30. My favorite birds to hear in the wee hours of the morning are mourning doves.

Here’s the problem – the snooze bar. The snooze bar has become my enemy and I have let it rob me of these precious, early morning moments, and it often ruins my morning. As a caregiver, I need to have something to give to my sons when I get them up and without my fill of early morning time with God, I end up beginning the day on an empty tank. Admittedly, I hit the snooze bar at least once during the night (my sons have to be turned and repositioned) and numerous times in the morning. The sleep I end up getting is worthless because I am waking up every 7 to 9 minutes. Here’s the kicker – my alarm clock is not next to my bed. That’s right, I have to hop out of bed to hit snooze and that doesn’t stop me. Why are habits so ruthless?

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Life is precious – every moment, every hug and every smile from my loved ones. I don’t want to waste another minute of it because I was a grumpy butt from not taking silent time before sunrise. I know it sounds crazy but it really does work. My days are much smoother and I am not as tired when I am up before the birds. We should all have a little time to ourselves in the morning – to reflect, pray, slowly sip some coffee, take a longer shower, whatever. I will conclude with a short, but powerful quote.

The morning breeze has secrets to tell you, don’t go back to sleep.
~ Rumi

Burned toast

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I am one of those people who cannot drive or walk while doing something else.  Like a dummy, I was walking down my basement stairs and looking at a calendar.  Next thing I knew, my feet slipped and I fell down a couple stairs and landed on the bottom.  I hurt a little so I took some ibuprofen and went to bed.  Everything was fine until a couple days later.  Searing pain up and down my left leg, swelling and twitching all over my leg.  This was almost a couple weeks ago and I am still in pain. Most of it is from the MD but just as equally to blame is my lack of self care.

This has been a real eye opener for me.  Honestly, it scared me into wondering how long I can continue taking care of the boys.  I want to last, I really do, and I most certainly will not at this pace.  It’s only a matter of time.

What to do.  What to do.  I am pretty sure the house will not be condemned if it is not spotless and we will always have clothes to wear if I get behind in the wash.

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Fear is what keeps me from letting things go and taking care of myself first – making sure I take time each day to work towards my goals and dreams.  We must have faith that so long as we do our very best, God will handle the rest.  Truth is, I am of no use to God or my loved ones if I am toast.

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In order to love others, we must be filled with God’s love.  In order to properly care for those we love, we must first take care of ourselves.  I must do it for God, myself, my loved ones and the world.  How much more beautiful would our world be if we would stop running ourselves ragged, pumped by our anxieties and fears?  Very beautiful indeed!

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