Tag Archives: illness

Writing about caregiving

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I spent last week at a writer’s retreat in New Hampshire. It was a wonderful experience, and just what I needed, to unplug and at the same time, recharge my writing inspiration.

I turned off social media, and turned inward to focus on what I really want to share about caregiving and how I should present that in written form. I also opened myself up to others who were going through their own painful experiences. But there was also plenty of laughter and great stories shared among the group.

Even for caregivers who don’t fancy themselves writers, taking a writing workshop can offer them a supportive stage to share their thoughts and feelings about the caregiving experience, giving a voice to those who are often forgotten or fade into the background.

Our teacher commented at the end of our time together that caregiving will eventually touch most, if not all of us, and that is so true. Even in our small group of memoir writers, there were people who had served as family caregivers and who were dealing with the deaths of spouses, parents and other loved ones after lengthy, debilitating illnesses.

Even if you don’t plan on writing a book, consider taking a writing workshop. There are plenty of one-day or weekend workshops, so no need to make it a full-fledged vacation (though it was a wonderful indulgence for me.) If you enjoy blogging, you may be surprised what the writing prompts at a workshop can bring out. You may be challenged to look at an event from a different perspective, and the feedback you get from fellow writers and instructors can be insightful and useful.

While I know talk therapy works for some people, I’ve never been a big fan of it personally, mainly because I don’t like to express myself verbally, especially when forced to talk about myself. But through writing, I’m able to do that with a greater comfort level. I also like the added bonus that I get some writing done while working through tough situations.

The most important thing of all though is that if you enjoy writing, keep it up! Whether you make it to a workshop or your writing ever sees the light of day, just the physical act of expressing your feelings is so beneficial.

Do you do any writing outside of blogging? I would love to hear about it.

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The caregiver’s curse

Mom is recovering in an amazing fashion from her major surgery that was just performed yesterday. The surgeon came to check on her today and sketch out a plan for the next few days.

Mom took the opportunity to tell the doctor about how she had cared for Dad at home for 2-3 years until his dementia became too much for her to handle at home. She had been healthy for 74 years, and then all hell broke loose.

The surgeon nodded sympathetically. “I have heard so many stories just like yours. There’s a certain level of adrenaline that kicks in to handle crisis situations, and surprisingly, that level can stay quite high for long periods of time. Then once the loved one dies, the caregiver completely loses that adrenaline boost, and that’s when sickness can kick in.”

It seems particularly cruel that the reward for doing something so selfless and loving as caring for a loved one with a disease can end up causing you to get sick, but that is reality.

Even doctors are admitting that caregiving can be hazardous to your health, but what real alternatives are there? Residential facilities are extremely expensive in the U.S. and out of the financial reach of many families.

I’m an only child. My father passed away a year ago. My mother is now sick. I quit my job to take care of her. Sure, I could put her in a facility and her life savings would be gone in a few months. Home nursing options are limited to a couple of visits per week in the small, rural town Mom lives in. I live in a big, expensive city. There are no easy options here.

We must do better for our elderly, and their families. We need more support, emotionally, physically and yes, financially.

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Another holiday season with illness

After enduring the ups and downs and final passing of my father just five days before Christmas last year, now I’m facing my mom facing another major surgery right around Christmas. As I’ve mentioned before, I’m not a sentimental holiday person, but you would have to be blind and deaf not to notice all of the holiday decorations and music around every corner.

Since I’ve been through this before, I know a bit of what to expect. And that’s the unexpected. You have to be flexible when you have an ill relative. This year, at least I don’t have the stress and guilt about missing time from my job. I no longer have one, for better or for worse. But as far as holiday celebrations go, I hope to make it back home for awhile before Mom needs her surgery. But I also know that I may get a call at any moment ushering me back to be with Mom. So Christmas will be celebrated ASAP.

When illness strikes and you are the primary caregiver, you must be willing to shift priorities. A holiday is just another day. One has to focus on the here and now, and what is best for their loved one who is ill.

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The little things that can make one’s day

So Mom would probably be mortified if she knew I was revealing this to the world, but it really is something that a lot of caregivers can relate to.

Today, all I wished for was poop.

Mom has a colostomy and after spending a week in the hospital, mainly on a liquid diet, her stoma had “gone asleep” in a manner of speaking. The medical staff warned us it might take a day or two to get things going, but after three days of solid food, Mom was barely outputting any stool. And that in turn was making Mom very sick. (Imagine how you feel when you are really constipated.) I feared another ER visit was in our near future.

But today, angels might as well have sounded from the heavens. Mom had stool in her colostomy bag! Yay for us! Our home care nurse was just as excited, and pointed out how when you are a caregiver, you have to enjoy the small victories in the face of illness.

That’s very true. I remember during Dad’s steady and steep decline into dementia, we would be happy if he was just able to eat, and didn’t have a fall in a day. It’s difficult to believe that one could take pleasure in the face of decline, but if you only focus on the negative, it will swallow your soul whole. I’m the ultimate pessimist, but even I recognize the joy of my mom being regular again. It keeps us out of the hospital, and out of the Grim Reaper’s grasp for a little while longer.

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Another Black Friday in the hospital

Another Black Friday, another parent in the hospital.

What a way to spend a holiday weekend.

The roller coaster of emotions is almost unbearable.

The good news is that we are going home. But what we don’t know is if the issue is truly resolved, and what tomorrow will bring.

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One step forward, two steps back

Just like with Dad, I’m once again experiencing the roller coaster ride that comes with illness.

Mom was supposed to go home tomorrow. But now her right leg, the same one with the blood clot issue, has swollen up again, tight and shiny.

Looks like we may be stuck in Roswell longer than we thought.

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Relearning your life

It’s interesting the simple things we take for granted, until sickness or old age strikes. I was talking to Mom today and she said in rehab tomorrow she’s going to learn how to get dressed on her own again. “Really exciting, I know,” Mom joked. (She hasn’t lost her sense of humor yet.) It made me think about how most of us go through our daily routines without even stopping to think about the steps involved. Getting dressed? Most of us master that as small children. Now Mom is learning how to do it all over again. It must be so frustrating on a certain level.

Of course, dementia didn’t give Dad a chance to learn new or old things. The disease robbed him of his mind, bit by bit.

And I’m having to adapt to a new way of living too. I’m not a fan of change, but this isn’t about me. Still, it’s amazing how one illness can change the life of a family forever.

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