Barefoot Lily Lady

My Caregiving Dream

Everyone tells me I need to take care of myself. “You can’t take care of your Momma if you’re not taking care of yourself.” I hear it from my family, my doctor, friends at church, my Facebook friends, and my on-line support community at myALZteam.com.

It’s true.

So, I’m trying to listen. I joined a gym and have been getting regular exercise, striving for 5 days a week while my hubby keeps tabs on Momma. It was the right thing to do and has been so helpful.

My concerned friends also say, “Take advantage of respite care. You need to take some time away – maybe go on a vacation.”

True again. But, I’m finding that one easier said than done.

Looking into respite care options has opened my eyes as to how difficult it is to find respite memory care in my community. I found two facilities with a room available: one would require that we bring our own bed; the other seemed perfect, albeit expensive.

Thankfully, my sister was able to arrange her schedule so she could take care of our mom while we got together with our kids and their families over Thanksgiving and again for our recent vacationing in NYC.

It concerns me that there seem to be so few options out there for someone with Alzheimer’s. I am learning that places which advertise offering respite care do not have dedicated respite care units. Rather, you fill out paperwork, have your loved one evaluated, then get their name placed on a wait list. Then you wait for someone to move out or die.

If I had the resources, my caregiver dream would be to build a respite care facility that would offer all the usual assisted living amenities, but operate a bit like a hotel, with guests staying for a few days to a month. My dream respite home would serve restaurant style meals, or bedside meals, depending on the guest’s particular need. Hallways would resemble a neighborhood street, with each door a different color, and a comfy chair or two outside on their “porch” just for sittin’ a spell and talking with passersby (you can see in the pictures below that I’m not the first to think of this).

My Dream 3 — Photo credit: sixtyandme.com

My little “neighborhood” would have a business district too. Pampering would be a high priority with a beauty parlor and a barber shop. A little store for “buying” snacks and comfort items would provide the dignity of making choices – maybe even an “ice cream parlor” serving up a scoop of the day.

In my dream, I also see a beautiful little chapel where guests could hear the Word of God preached and sing great hymns of the faith as they worship God. I would invite churches to bring their choirs and youth group ensembles to sing too.

I envision a wheelchair and walker-friendly theater featuring classic movies with closed captioning. We would host music and dance recitals allowing young music students to interact with the memory-impaired through the heart language of music and the arts. I can only imagine the joy this would create.

Artists could share their passion – painting, jewelry making, knitting, card-making – showcasing their art form and perhaps encouraging our memory challenged guests to get creative too.

Oh, and we certainly can’t forget the gardens!

Yes! In my dream I see amazing gardens (with plenty of lilies, of course!), planted and cared for by volunteers, scout troops, garden clubs, and youth groups. Of course, there would be multiple raised gardens where guests could play in the dirt to their heart’s content.

I can dream, can’t I?

Small Changes

Back in September, I wrote “The Slow Backward Slide”, chronicling the toll my sedentary lifestyle as a caregiver had taken on my own physical health (you can read that here). As you may recall reading, I took heed to my doctor’s insistent voice reminding me to take care of myself first.

I went home from that doctor’s appointment and asked for a gym membership for my birthday. My hubby’s gift truly has been the gift that keeps on giving as I see each effort I make slowly make small changes in my well-being. Here are some snippets in diary-entry fashion of some of the many things I have noticed since I began paying closer attention to my own physical needs:

9/15/17 – Today was my first day hitting the gym – well, the first day in a LONG time. If I felt a twinge of guilt leaving Momma in Wayne’s care for a couple of hours, it was only momentary. This “me time” was wonderful. Slightly indulgent. Sweaty good. Just right.
09/21/17 – Began taking an exercise class that Jenn (the gym’s manager) recommended. Though my piriformis muscle issue makes some of the exercises painful, I can see that it will eventually help.
10/4/17 – Had the physical therapy consultation that my doctor ordered. Amazingly, the problem I was referred for is clearing up with the exercises I’m doing at the gym. Physical therapy told me to keep doing what I’m doing, gave me one more exercise to add, and sent me home. Yaay!
10/26/17 – As I was taking my class today, it dawned on me that the exercises which brought excruciating piriformis muscle pain a month ago bring no pain at all today. Praise God for strengthening my body.
11/6/17 – Okay, so maybe I need to take the ‘distance’ feature on exercise equipment with a grain of salt. Today’s workout – 13.8 miles covered in 60 minutes. Last week’s workout on a different machine, but same amount of time 20.0 miles. Hmmmm! I guess the distance doesn’t really matter, just so long as I keep moving in the right direction.
11/20/17 – Having a bad body image day today. Ugly crying going on here.
11/21/17 – Hit 15 miles on the exercise bike today!
My husband told the world (well, his Facebook world) that I was beautiful today. For the first time in a long time, I believed him.
11/28/17 – I rode the exercise bike for 15.4 miles today following my Tuesday class. On the way out, Eva at the front desk encouraged me by saying, “You’ve made a lot of progress even since I started working here.” (She began her job at the gym about a week after I joined.)
11/30/17 – I had fun in my exercise class today. Even felt myself moving to the beat of the music. I could only do 7 miles on the bike today due to time constraints, but I felt so much stronger than when I began this journey.
12/1/17 – Realized today that, since October 1, I have read at least six really good books while riding the exercise bike. One of the books I read twice! I’m enjoying exercising both my body and mind.

One of the things I appreciated about my new gym was that it had a theater where you could use any number of exercise equipment choices and watch a movie while you pedaled, ran, rowed or stepped. I watched part of one movie the first day and thoroughly enjoyed it. The next day, however, I brought along a book and found an exercise bike with a book rack in another part of the gym, then read as I pedaled for 30 minutes. Not long thereafter, I began pedaling for an hour, reading as I pedaled.

You’ve probably heard the saying: “You can’t pour from an empty cup. Take care of yourself first.” Before I knew it, I had plowed through a book I had been trying to read all year long, feeding my soul while I exercised by body and filled my proverbial cup.

Sweet and Sad Moments

Just as I hopped in my car after my “me time” at the gym this morning, I heard my phone chime. It was a text from my hubby telling me that my Momma missed me and was hoping I’d come home soon.

Hubby filled me in on the goings-on during the two hours while I was away. I guess Momma kept wandering around looking here and there, obviously looking for someone. When Wayne offered to help her, she told him that she was just looking for her family. She was a little worried I wouldn’t come home.

Sweet and sad at the same time. Sweet that she was looking for me and still knows I am family. Sad that my absence for even a short time made her feel abandoned for even a moment.

Upon arriving home, I found her seated on the edge of her bed watching the door, just waiting for me. The second I walked in the door, “Oh, there you are, Cindie. I was hoping you’d come back.”

Note the arrows where she’s trying to figure out which word to read next.

As Momma’s understanding of my relationship to her as a daughter fades, these very sweet, melt my heart moments, are happening more often now.

After supper Momma was quietly coloring a picture in her coloring book when she looked up at me and said with a smile, “This picture I’m coloring is for you and Dad.” She went on to read and tell me that it says, “When I am Afraid, I Will…” She stopped abruptly, unable to finish deciphering what the artistic rendering of Psalm 56:3 said. After a few moments of trying her best to figure it out, she said, “Oh, well, you’ll figure out what it says.” I told Momma it was very sweet of her to color that for me, to which she responded, “Well, I have to do something for you and Dad, for all you’ve done for me, and I don’t know what size you wear.”

The Day Dad Disappeared

Journal Entry – August 3, 2017

The past few days Momma has been paging through the little book of remembrance prepared for her by the funeral home that oversaw my Dad’s funeral arrangements in 2008. While I was preparing breakfast for her this morning, she looked up at me from her place at the kitchen table, tipped the book toward me as she pointed to a picture and said, “Is this how Jerry looked?”

I leaned over the kitchen counter a bit and looked at the page. “Yes, that’s Dad. He’s very handsome, isn’t he?”

“I don’t remember him looking like this.” It was a great picture of Dad, so I wasn’t sure what to say in response. I decided I should gently inquire, “How do you remember him looking?”

My heart should have been ready for her answer. But it wasn’t.

Tapping her temple as if trying to jog a stuck thought loose, with a heaving sigh and disheartened look she added, “I can’t remember him at all. I mean, I can’t bring him up in my mind anymore.”

I quickly swiped the tears stinging at the corners of my eyes, and then mom added, “Really, I can’t. And it’s really terrible when you can’t remember something you know you’re supposed to, and feels even worse when you can’t remember someone you loved.”

As a caregiver and a daughter, I would like to be able to help Momma create new memories to make the ones that are disappearing less painful. The sad truth is, this disease called Alzheimer’s makes it impossible for her to remember whatever fun thing we do, or pleasant conversation we have today. But, by God’s grace, I will continue to do my best to help Momma resurrect good memories and create new memories to enjoy, if even for a moment.

Book Report: Creating Moments of Joy

Do you remember writing ‘book reports’ when you were a kid? I may have been a bit of a cheater back in elementary school when it came to book reports. Continue reading “Book Report: Creating Moments of Joy”

Seeing Through my Momma’s Eyes

Evenings are challenging at our house. As the sun goes down, Momma gets a little more anxious and fussy.

Maybe I do too.

I’m pretty sure that when I reach the end of this caregiving journey, I’ll have only a few regrets. One of those regrets happened last night. Continue reading “Seeing Through my Momma’s Eyes”

The “Good Job” I Needed to Hear

Stepping out of the car after my morning at the gym, I reveled in how nice it was outside. Our weather today was gloriously warm at 55º. Well, that’s warm for November 28th in Wisconsin. The slight breeze and the pleasant feeling of sunshine on my skin made me want to linger outside for just a little while. Perhaps a little bit of gardening. Momma was busy coloring at the kitchen table, so I grabbed my garden shears and an empty bin and Continue reading “The “Good Job” I Needed to Hear”

Missing the ‘Old Life’

“What do you miss most about your “old life”?

Michelle Daly posed this question for caregivers on a recent blog post. It’s hard for me to choose just one thing, so I’ll mention the ones that come to mind first.

I miss sleep. Uninterrupted sleep. I’ve been sleeping with a video baby monitor on my nightstand long enough now that I’m learning to tune out Momma’s “normal” noises and harmless sundowning activities, such as rearranging her drawers and taking inventory of the contents of her purse. I have learned to tune into her needs, such as times when she needs extra help in the bathroom, or when she’s afraid and confused. So, I am getting more sleep, but uninterrupted, monitor-less sleep would be nice.

I miss impromptu ANYthing, but especially the little spur of the moment daytrips with my hubby. Those days when we would just hop in the car and end up at Devil’s Lake for a hike, or down on the UW Campus on one of the walking paths, or just meandering through an out of the way garden center. Fun times.

Momma loves Pastor Jeremy and his family!

I miss having people over for dinner. But I’m working on that one. Momma’s usually social self is impaired by her Alzheimer’s frets and fears, making taking her anywhere a chore and very stressful for her. But, the hostess in her loves to have people come and visit with us over lunch or supper, so I’m trying to incorporate more social time with others into our week. Last night our friends Jeremy and Anouk came over for a pizza night with their two children, Mia and Isaiah. Such fun!

A blast from our past – my twisty grandgirls

But what do I miss most? If pressed, I’d have to say “time with my grandkids” is the thing I miss the most. No more impromptu slumber parties, ‘Fun Fridays’, trips to the library, or excursions to the zoo or a nearby park that usually end with a trip to Culver’s for frozen custard.

Violet & Charlie in a friendly game of Othello

Tonight four of my grandkids came over for pie and ice-cream and a little visit. From the moment they walked in the door with their mom and dad, they were clamoring over what we would DO together. The grandsons wasted no time in pulling out some classic board games. The boys took turns playing “Battleship!” with me, with George getting a little help from big sister Violet. Later, our five-year-old George brought out a chess set and asked for help in playing it. Even though this particular chess set has a few pieces missing, his Papa and Daddy helped him learn to make moves and we delighted in his gloating over captured pieces. Granddaughter Violet and her brother Charlie played ‘Othello,’ another favorite game of strategy. I even got in a few hands of ‘War’ with Henry. When I wasn’t playing one of the games, I was just watching and smiling…beaming, actually.

Momma and her little friend Mia enjoy coloring together.

I love these times with family and friends, and wish there were more of them and that they could be longer. But tonight, I’m just grateful for our little get-togethers. Momma loves to color and will gladly share her coloring books and colored pencils with her great-grands and little friends. Seeing children laugh and try new things brings a quiet joy to her eyes. The memory of their visit will soon disappear, but the contentment and joy linger in her heart just a little longer.

Losing Ground

My brother and I spent our morning and afternoon yesterday wandering the halls of the William S. Middleton VA Medical Center for three appointments. It’s nice to spend a little time with him. My brother is normally a bit reclusive in nature and doesn’t have much to say, but he’s such a nice guy with an undercurrent of humor that takes everyone by surprise, and a belly laugh that just infuses the room with a bit of joy. Yesterday, at each appointment, he found it belly-laughing hilarious to make sure everyone knew I was his OLDER sister.

He may be younger than I am, but I’ve been noticing some subtle changes in Brad lately. For instance, it’s harder for him to transfer from his wheelchair to either his bed or the car. When he goes to the VA Hospital he has to state his name, date of birth, and last four numbers of his social security number quite often. The pauses are getting lengthier as he searches his brain to recall the information. Sometimes he’ll look at me with a “was that right?” look in his eyes.

Brad’s trouble with memory loss is different than Momma’s, in that it is vascular, most likely due to mini-strokes. Brad’s heavy smoking history may have played a significant role in this. We’ve known about the strokes for about two years now, but yesterday, I felt his memory loss was more significant. At 10:00 am he had a vascular ultrasound performed on his lower legs to check to see how his diabetes has affected his circulation to his feet. At 11:20 am, when questioned by the podiatrist about how the test went, he couldn’t recall even having had the ultrasound less than an hour and a half ago. Then, during his afternoon routine retina injection appointment, I noticed he had trouble with following the doctor’s simple directions like “look up and to the left” or “look down and to the right.”

It’s really hard to watch both my mom and my brother losing ground in their short term memories. As difficult as overseeing their care is, I realize I’ve been given both a huge responsibility and an even larger privilege in caring for both of them.

Years ago (I was probably 12 years old), I remember Dad taking me aside when Brad was having an especially hard time with his school work, telling me, “Be nice to Brad. Try to help him out. Everything is just a little harder for him.”

I think my Dad would be happy to know I was listening.

Sweet Moments

The affect of Alzheimer’s on those we love can rip your heart out. Other times it melts your heart, reduces you to a puddle of tears and infuses you with more joy than you can possibly imagine. Sometimes I need to be reminded of that joy.

All tuckered out after an all-nighter coloring session.

After a particularly rough night with Momma, I received this picture in a text from my husband while I was exercising at the gym. The Momma who wouldn’t sleep a wink in her bed the night before was now sound asleep at the kitchen table after coloring for hours on end.

I smiled through my tears as I thanked God for my sweet Momma.