small, everyday

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Finishing out this 31 Days series with one last entry from my caregiving journal. Thank you for reading along. This has been a special month for me as I took some time to reflect on and celebrate 5 years as a caregiver!

8/25/2013

After church & Wheatfields and another feast with family, I get a call informing me that Mr. Al is in the hospital, and probably won’t make it through the night. So who knows what tomorrow’s shift may bring. [It was a special, quiet, sacred kind of day, caring for a new widow, just "being there," giving hugs, making breakfast, getting her to nap.] And I break down and cry in the car [I do this more often than I realized, oh dear] because it’s hard, and because it brings it all back, and in this moment I also cry for Miss Trish. I miss her. Simply because she loved me and I loved her and she was so kind to me. It’s so sad.

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I do get attached, and I do have a hard time saying goodbye, and I do grieve and ache. I don’t think I would change any of that. It is hard. I do feel lonely and afraid and not as safe, when I lose one of these dear elders who made my life more OK and stable.

I have one of Mr. Al’s shirts in the back of my car, half mended. And it is in small, everyday ways that I love my people. In small, everyday things, their memory is brought back to me. How they impacted me in the grand scheme, in the deep themes, in the living.

“The Lord is my light and my salvation; whom shall I fear? The Lord is the stronghold of my life; of whom shall I be afraid?” Psalm 27:1

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caregiving compliments

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Today I want to remember a few compliments I’ve received as a caregiver. Some over the top, some lovely as can be, some hilarious. (Keep in mind, to balance these out, how I’m not such a special person!) 

I’m glad you’re here, you make me feel good. -D

Frances is the technological genius. -Miss Trish (Overstatement!)

I like your little bonnet. -D (Ha. I was wearing a hat.)

I brought you something hot and delicious! -Frances, meaning the coffee.
Yeah– YOU! -R (hahaha oh my)

I wouldn’t pick anyone for you unless he was a fun dog. -D, talking about doing a little matchmaking.

Cute little maid. -D, referring to Frances.

“Mom I have to go, but Frances will be here this afternoon.” -K
“Oh well she’ll work miracles.” -M

“You’re a good one to have around.” -M

“It’s important, you being here around the house… remember you are doing missionary work.” -Miss Trish

I’m including this one for you Dad! Clearly I have you to thank for winning over one of my most cranky ladies:

“It would be fair to describe my mother as a difficult client. Frances is someone my mother absolutely adores. I will never forget the day when I was saying, ‘something something Frances’ and Mom raised one eyebrow and said, ‘You know her father’s a missionary?’ and I thought, ‘Wow, she likes Frances!’ I hope you know, Frances, that she doesn’t really like people.. but she just loves you.” -K

And if I was to pick a compliment that was both the most ridiculous and the most meaningful at the same time, it would definitely be this one:

“If I was to lend someone my toothbrush, you’d be at the top of my list– the ONLY one on my list, in fact.” -Miss Trish (Remember, she was a total germaphobe! So this was really something! For the record I never borrowed her toothbrush.. or wanted to… the offer was pretty sweet though!) 

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caregiving is…

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2014-03-25_11-36-25_25 1123001249Caregiving is dressing up in matching jackets to go out, and always carrying a Kleenex. Caregiving is making 3-D paper snowflakes that impress to no end and stay up all year. Caregiving is celebrating Thanksgiving together early. Caregiving is jr. cheeseburgers from Runza, again, because that is all she will eat.

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Caregiving is getting to know my city 500% better than I ever did before. I know where the Walgreens, grocery stores, and doctors offices are. Better than that, I also know what specific parts of town used to be like 70 years ago. I have all sorts of borrowed memories, and I’ve made many new ones too. “This is where we always came for lunch.” “This is the park where we sat in the car and ate McDonald’s.” “This is where we tried to take a shortcut, got rather lost, but loved looking at all the huge houses.”  

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Caregiving is doing extensive planning, convincing, and reassuring (because going places with someone with Alzheimer’s can be a complicated process!) so Miss Trish and I could go to a performance of The Messiah together. This is one of the absolute highlights of my 5 years as a caregiver.

And finally, in the words of the daughter of one of my long-term clients, caregiving is

“[sharing] in the grace-filled times that the elderly have when they lose their independence and are forced, against their will, to rely on others.”

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my unconventional caregiving techniques

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These are just a few silly things I do sometimes that help me as a caregiver, particularly when I’m caring for someone with Alzheimer’s.

Have a slow-motion song. This one is for when I am nearing the end of my patience. The thing is, no matter much re-directing I do, I still get asked the same questions over and over and over and it does wear on me after a while! So, I have no idea how I originally came up with this idea, but imagining the beginning to this song makes me see the scene in slow motion…which helps me loosen up, keep my sense of humor and give another gentle answer.

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Make a Jim face at the camera. When things are just too bizarre but I am trying to act normal and calm. It helps to pretend that there is a camera and a sympathetic audience. So I make a goofy face behind my client’s back. No harm to them and it makes me feel less stressed!

Pretend to be an actor rehearsing a scene. This is for when I’m having that conversation. The one I’ve already had seventeen times that day. Although, to my sweet client with dementia, this is an original conversation. So it would be really rude if I sound like I already know what they are going to say! I challenge myself and pretend I’m an actor doing a scene over and over in slightly different ways. “Interested” “curious” “amused” etc.

Sigh loudly in the car. After a long shift it’s important to not carry all that stress home with me. I just look around to make sure no one will hear, sit in my car for a minute and sigh extravagantly. It’s very strange but it helps so don’t judge!

Pretend to be someone I’m not. Or to like things I don’t really like. Squirrels, for example. I despise them but most older folks think they are cute, funny and adorable so I pretend to go along with it. Hazelnut iced coffee from McDonalds- I do not really like it, but my client does and loves it when we have some together, so I pretend to love it too. Being a germaphobe. Miss Trish was one and I realized quickly that the best way to get her to eat something I prepared, and to trust me in general, was to act like I was hyper-concerned about germs and over-the-top amounts of hand washing myself. It totally worked.

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3.25.14: day in the life of a caregiver

Back in March I kept track of a whole day, figuring I’d add it to my “day in the life” from 2013, and eventually I’ll have a collection.

But then the day actually happened and it was a bizarre and difficult type of day! I needed time to recover, in fact, and no I did not feel like talking about it. Only now with some distance, (and knowing that it turned out fine in the end, spoiler alert) am I ready to re-visit this particular Tuesday!2014-03-25_11-36-41_479

7:15-9:30 One of the perks of my odd schedule is I often have time in the mornings. I can take a walk, be productive (yeah right), or like today- just make breakfast and read the entire time.

9:45 Pull out of my driveway. Wave at Elmer the beagle & the neighbor boy out for their walk.

10:00-3 My first shift. It’s with the same lady as this day last year, only just her, since her husband died in August. I fold laundry, make a little lunch for us (tomato soup and pb & j) and we drive to her dentist’s appointment.

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She is a kid at heart, so after that we stopped at McDonald’s and got hot fudge sundaes and ate them in the car! :) When it’s a bad health, bad news kind of day, you need a little ice cream. “Frances, don’t you ever get old,” she recommends.

We make a Walgreen’s stop and then go back to her place. I want to give a quick shout-out to awesome employees who go out of their way to be friendly to seniors. She calls a man at this store “her son” because he always jokes & talks with her. It’s a small thing but means a lot!

I take a sweater vest of hers with me so I can sew on a button at home.

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3:05 Leave her independent living facility which involves multiple floors and a long walk, cause it’s huge. I try not to use my phone in the building (where elderly people might see me) because I like to fight against the stereotype of “crazy young girl rushing around using her cell phone” but this is the only chance I have to listen to my voice mail. It’s from my friend Yaneshia in Jamaica, just saying hello! Aww.

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3:10-3:30 Shut my scarf in the car door. Drive amongst the crazy teens just getting out of school. Pass an accident. Feel like I’m taking my life in my hands.

3:30-6:30, actually, make that 10 P.M. My second shift. Let’s just say it involved a trip to Urgent Care. My client had a fall, I would not have been able to prevent it but I still felt terrible. She cut open her finger and it was bleeding all over. I called her daughter and she came and we headed to the clinic.

The tricky part was my client had Alzheimer’s, and kept forgetting she had hurt herself- I don’t think she had much feeling in her fingers- so she kept trying to use her hand! And re-opening the wound! And asking why we were there, what we were doing, etc. It took a while for us to actually get in to see the doctor, and it was so stressful trying to keep her calm and still. There were a few other factors involved that made it stressful.

When we got back from the clinic, the daughter left, saying if anyone could get her calmed down and into bed, it was me. Well I thought I could too, and came close, but all the hubbub was too much for my client. Alzheimer’s patients do not take well to stress and unfamiliar happenings. So she became very resistant to me although I was trying to help her and keep her safe. Normally she trusts me but that night, she did not, and so finally I just had to leave.

There was nothing I could do. That stung! I love this woman dearly and it felt like I was letting her down.

So after that long crazy day, I sat in my car and cried an ugly cry of overwhelmed emotions.

And I wondered why I had arbitrarily chosen that day to be my “day in the life” day. What a giant mixture of everything- the good, the fun, the awful, the defeat. More dramatic than an average day, for sure.

And I went to bed and got up the next morning and kept on being a caregiver.

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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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