caregiving is

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Caregiving is making cake for a special occasion and leaving it for the other caregiver & your client to eat while they watch. (Hahaha I forgot I did this.) Caregiving is getting caught up in the hype of The Royal Wedding simply because it was a happy story on the news that we could enjoy talking about. Caregiving is making delicious food. Caregiving is taking any excuse to celebrate.

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after crossing the bridge

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Being a companion to those crossing bridges at the end of life does mean that eventually, I will have gone with my client as far as I can go.

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My first two long-term clients died within a few weeks of each other. I was with Miss Trish right up until the end. For her, it was difficult, she was not at all peaceful until the last day. She had major anxiety, panic attacks, delusions.

Being with her through her final weeks was a special experience. I was thankful for my previous hospice training, although this situation was much more personal, as Miss Trish and I had developed a deep bond over the years.

I didn’t realize how draining or heavy it all was until afterwards.

I wondered: How would I take the loss? Would I still want to be a caregiver?

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I had some time off, and much-needed quiet.

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I took naps and walks. I made bread. I went through pictures & notes. I cried. (I still cry sometimes.) I went to the funeral. I got hugs from her other caregivers and her daughter.

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And then a few days later, because this is just how God’s timing worked out, I went to Jamaica on my missions trip.

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Sunshine, children, the ocean, funny teenagers, winning card games, and heaps of fresh pineapple will do a lot to cheer a person up, I have to say.

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When I came back, I had three highly unique characters waiting for me to take over as their caregiver. It happened so seamlessly, as they had been my roommate’s clients before she got a new job. I just took over for her and already knew them a little bit.

I did enter in with open eyes, knowing that I would go through pain again. I also entered in with an open heart, deciding that the pain is worth it and that love is greater than loss. Yes, I still wanted to be a caregiver.

(Part I: crossing the bridge)

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fictional caregiving inspirations

Here I am, ready to write, with a serious sugar and caffeine high. What? Why yes, I was hanging out with Val and Skip tonight. I always leave their place in this condition.

I want to talk about several fictional characters in books & movies that have influenced or inspired me as a caregiver.

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Anne Shirley. Anne Shirley forever. Specifically how she wins over the cranky, intimidating old ladies by the sheer force of her charm and whimsy. Let’s open up the curtains- eat lunch on the porch- remember that life is wonderful! It’s probably because of her that I have a certain fondness for the grouchy type of elderly woman. I enjoy the challenge of making them smile and enjoy things and come to love me against their will! 

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The Nancy Drew book Password to Larkspur Lane. The creepy fenced-in old lady on the cover, that alone made a lasting impression on me. Nancy disguises herself as an elderly woman so that she can be admitted into the oddly secure sanatorium, where the staff is trying to extort money from the residents. Not that I’ve ever encountered such a situation in real life, but I’m always on the lookout. I do believe this book influences how I view nursing homes to this day. If I ever find a wounded homing pigeon with the coded message “Blue bells will be singing horses!” attached to its leg, I’ll know exactly what’s up.

Just enjoy this quote from the book, you’re welcome in advance:

“We’re in enemy territory now,” Nancy remarked. “From now on, caution must be our password.”

Robot & Frank. This discovery began as me doing one of the things I do best: picking very strange, terrible, and/or perfectly cheesy movies from the library and inflicting them on my roommates. As it turned out, I liked this movie quite a lot! Just check out the description: “Set in the near future, an ex-jewel thief receives a gift from his son: a robot butler [really, a caregiver] programmed to look after him. But soon the two companions try their luck as a heist team.” How could that not be good? It was a sweet movie, brilliant and sad and well acted. And I enjoyed pondering the future of robot caregivers.

Another movie dealing with elderly themes, again from the library, was Lovely, Still. It was Christmas-y and bittersweet. I liked how it helped me see things from the perspective of the main character, an older man, who’s perceived reality was very real to him. Sometimes I get too caught up in my “all-knowing” outlook of a caregiver & young person.

Can’t forget about Up. Sigh! Sniff! That whole part that tells the story of Carl and Ellie always gets me. A neat part of being a caregiver is getting to be around people who were married for 50, 60, or even 70 years. And not only that, they were totally in love.

Still Alice. This is the kind of book that sticks with you for a long time after you read it. I loved it. Basically it’s about a woman who has early-onset Alzheimer’s, written from her perspective, so you experience things along with her. Like being lost even though all the landmarks are perfectly familiar. Or searching your house frantically for your keys , or for something, you aren’t sure what, but you are searching and searching. My brain hurt at times. It helped me to put myself in the shoes of someone with Alzheimer’s, just a little bit. I pondered identity and memory and all sorts of deep things.

Well the coffee, other coffee, brownies, and one more half of a brownie are starting to wear off, so goodnight!

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crossing the bridge

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From my caregiving journal:

1.27.11

Today was draining and tedious and exhausting.

But.

How I feel right now is the way I want to feel when I cross the finish line at the end of my life- sore, tired, battered, full of sadness and sweetness, overflowing, knees & hands used up, eyes full, shoulders leaned on, knowing that I’ve poured myself out. Ran the race. Stood firm through God’s power. Gave & gave generously, my whole life.

Miss Trish was so confused, all day. Everything took so much, and we had so much to do. I could feel the struggle within her mind. The load of anxiety and stress.

And then, I re-entered the room.

She was crying. Choked out, between the first tears I had ever seen her cry, how I had helped her to cross the bridge of grieving for [her husband]. That I’m a wonderful person and she knows I have a bright future ahead of me.

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The last years of life can be lonely and very hard. I’m honored to be a companion for the bridge-crossings.

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notes

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At times I find a scrap of paper around the house, with notes of an Alzheimer’s client trying to remember something or ask something. I’ve kept some of them because they provide a little window into what is on their heart, even when their mind is having trouble keeping up.
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The vulnerability of someone with Alzheimer’s is what draws out my compassion. I want to shield them and help them feel safe and loved!
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My least favorite part.. answering the question, “Where is my husband?” How do I even do it? I don’t know. Sometimes I go with the story line agreed upon by family and other caregivers- “he’s on a trip” or whatever it may be. It is gentler to not remind a person dozens of times a day that their husband of 59 years is dead. But I also dislike lying to a dear little client.. so at other times, especially if I can sense that deep down they know the answer, I tell the truth as softly as I can.
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The move to a nursing home or assisted living is so hard. Better in the long run, usually, but it throws off a person with Alzheimer’s so much.

A happier kind of note: finding my name written places! :)

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And a score sheet of our many card games! Something my client can still remember how to do- so it boosts her confidence, distracts her from a constant loop of trying to remember/worrying, and adds a lot of fun to our day!

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a good thing

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From my caregiving journal:

12.4.12

Thought it was the 3rd all day. Oops.

Working a lot this week! It’s a little crazy! But I’m making it!

Today Miss Trish and I did an ornament decorating activity and had a fun time. If I can bring her a smile, then that’s a good thing.

To tired to think/write. [I used the wrong "to" which really shows how tired I was!]

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a special person

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On plenty of days as a caregiver, I do a perfectly adequate job. No fanfare, no heart-warming moments. My client was cared for and I did what I needed to do, that’s all.

I don’t necessarily feel like a hero then, or a special person. And here I will ramble on a bit about something that has been a pet peeve of mine but I’ve not always known why: when people ask me what I do, then respond with,

“Wow, it takes a special person.”

Some reasons this bothers me:

  1. How to respond??
    1. “Thank you for noticing, I am a special person!!” Maybe comes off a bit prideful.
    2. “No I’m not!” Sounds like I want to pick a fight about why I’m not special. With their comeback always being, “oh but you ARE!” Which is just silly.
    3. *Some sort of meek agreement/thank you* This much humility is hard for me! Ha.
  2. It implies that the other person is not a special person. How mean!
  3. It seems to let the other person off the hook of being “a special person” like, “YOU are one who does those things, while I am not.” My thought is, at some point in life most of us will be put in the position of being that “special person” to somebody. Your parents, grandparents, kids, a co-worker, a friend who is sick, or whatever. There will be hard things to do, and you will do them. Anyone can care and help someone, it doesn’t take a special category of person.
  4. It’s a “yes, but also no” kind of thing.
    1. I do believe that God gave me a special mixture of empathy, patience, spunk, love for Jeopardy, and what-not, because one of the things He created me to do is care for elderly folks. I get excited about my work! I was made to do this! I am special!
    2. Also I am not special! I could only do this work with my Father. Without His help along the way I would have failed long ago, because I’m prone to lots of non-specialness: laziness, me-first-ness, etc.

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Example: a memorable afternoon of caregiving. I was heading into my shift very tired, irritable, non-special. I tossed out a quick prayer/threat, “God, if you want me to be a caregiver to this difficult woman for the next 4 hours You have to help me big time.” It was not pretty. But slowly my heart was humbled & softened and I discovered an extra reserve of patience. Surprisingly I had a truly wonderful, rewarding time caring for a special lady.

I was willing, more than I was special. Willing to serve, to give love. That opportunity is open to anyone, and anyone can put their special spin on it.

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