I AM CareGiver

Coming To Terms With..

So, I’ve been at this 24-hour caregiving thing now for 4 years. I just dove right in, not having been helping with caring for my parents as I was living over 4,000 miles away. I didn’t really think about what I was going to be giving up, just basically what I was going to be doing. At the time, that was helping my parents take care of themselves until they leave this life.

When I arrived, they were both still independently mobile for the most part and so could toilet and bathe and prepare meals for themselves. I took over the housework and running errands and transporting Mom to her many doctor appointments.

Since then, Mom’s been diagnosed with Congestive Heart Failure and must watch what she eats and how much liquids she drinks. Her Post Polio Syndrome disease has really progressed and she now requires support for pretty much everything: help getting out of and into bed, showering, dressing, combing her hair, and walking a few feet to the bedside commode are the big things. With the progression of the PPS, her COPD has also kicked it up a couple notches, so much so that she now uses an oxygen concentrator machine 4 to 5 times a week to sleep comfortably at night.

Dad’s hearing impairment has worsened, and he can no longer see due to ignoring the cataracts. Because of this loss of eyesight, I now must guide him to the bathroom and sometimes help him with eating. His Alzheimer’s has worsened some since I’ve been here too, but thankfully his medications keep that in check for the most part.

So, over the years I have had to come to terms with a couple things:

For the most part, my time is no longer my own. I cannot schedule any type of appointment without having someone else here to help in my place. I can no longer rely on my brothers on a regular basis, especially during the week, and have to pick and choose my requests. I just assume that anything I do, whether its preparing a meal or medications for the week, watching a TV show (thank goodness for DVR), writing a blog post, talking on the phone to a daughter or friend, trying to nap, or quickly dashing off to the grocery store 10 blocks away — I will get interrupted.

This has been frustrating, and I have let that frustration get to me at times. But, I’m coming to terms with the fact that my time is not my own and getting better with just “going with the flow”.

The other big thing is my parents are no longer the people I had known. I had lived out of state for over 25 years. For about the first half of that, my parents had relocated to Florida, which was closer to me and so we visited fairly often. But when I moved out west and they moved back to WI, our visits were mostly only over the phone. I knew of my Mom’s heart issues and PPS and I was told when my Dad had begun displaying signs of dementia, but when you’re not there witnessing it, those are just words. Granted, as people age their physical appearance and abilities change. But I was quite taken aback when I first experienced it for myself.

Accepting them for who they are now is still a hard one for me. Mom still has her wicked sense of humor, is still a very caring and doting parent, and still has a creative side. Unfortunately though, her ability to sit comfortably in other chairs plus arthritis has limited her crafting to knitting and crocheting while in bed 24 hours a day. She used to also be an avid seamstress making quilts, clothes, dolls and stuffed animals along with clothes for each to wear. She did cross-stitch and needlepoint. She also enjoyed making all types of jewelry like earrings, bracelets and necklaces. And she loved to bake.

Dad loved to travel by train or just get in the car and drive. He enjoyed watching football and NASCAR on TV. He was the life of the party when we would gather with his extended family. Now, he basically sleeps and eats, with bits of conversation tossed in here and there.

Sigh.

I love that they are still here and I am extremely grateful that I am with them now. Being able to repay them in this way for bringing me into the world and caring for me is such an honor and a gift. I am happy to adjust however I need to, just as they did for me. 🙂

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