art – Barefoot Lily Lady

Tuesday’s Caregiving Tip: Laminated Photo Cards

Whiteboards are a good tool we use to help Mom remember names.

Eventually, with very few exceptions, all those afflicted with Alzheimer’s lose the ability to remember names. In the beginning stages, it’s an occasional inability to remember the name of a friend. Somewhere in the middle stages of this mind crippling disease, my mother began having more trouble with names. I noticed names scribbled in notebooks, on church bulletins, on 3″ x 5″ notecards, and backs of envelopes. It was her tool for hiding the fact that she was beginning to forget the names of her close friends.

Momma belonged to a group of ladies from her church who called themselves “The Lunch Bunch.” Each lady friend took turns choosing the destination for their culinary adventures. It was a sad day when Mom decided she could no longer meet up with her friends. She told me it was because the lunch venues were so far away. In retrospect, the unspoken truth was Momma was embarrassed she could no longer navigate driving to unfamiliar places. Even sadder and more difficult to admit, remembering the names of her closest friends was becoming impossible.

Our church family has become Mom’s surrogate church family now that she lives with us. My mother enjoys visits from her new friends, but is nervous about not knowing their names. To ease her transition toward knowing the names of these new friends, I borrowed an idea from a friend I’ve never met who lives in Yorkshire, England. A fellow caregiver to her own mother with mixed dementia, Heather and I “met” on Creative Carer, Heather’s Facebook page dedicated to inspiring and giving ideas to caregivers for those living with dementia. Our mothers seem to be travelling parallel paths in the progression of their individual journeys in the uncertain world of dementia. Heather is amazingly creative in her approach to caregiving, capitalizing upon her mother’s lifelong passion for all things artsy and crafty (you’ll also find many creative art therapy ideas on Heather’s blog here). As her mother’s memory began to fade, Heather created some laminated pages for her mum, depicting life events, useful information, and snippets of joyful events that had happened in her lifetime.

The laminated cards are double-sided and fit perfectly in her purse.

With Heather’s brilliant idea as seed thought, I made some little laminated photo cards mom could keep in her purse. Each card has a photo of friends and family who come to visit, with names written on the card and perhaps a little reminder as to how mom knows that individual or family. I love seeing Mom discover these cards in her purse. It’s a perfect sundowning activity for her, as she loves to go through the contents of her purse during her late-night purse rummages.

Whenever a new friend comes for a visit, I take a picture of them with my mom, then create a card for her before their next visit. About an hour or so before a guest’s next visit, I take that card out of her purse and show it to her. She really appreciates having the card as a reference.

Next project on the horizon: create a few cards featuring her childhood, family, nursing school and wedding. Memories from her early years are still relatively intact; these cards may help Mom tell (and retell) her stories to visiting family and friends willing to sit with her for a moment and listen.

A Dark Chocolate Day

I’m trying to like dark chocolate. Trying, but I’m not there yet.

Not even close.

While others love it and say, “It’s healthier for you,” it still tastes rather bitter to me. Now, wrap that bittersweet dark chocolate morsel in a whole lot of milk chocolate and I’d be one happy girl.

That kinda describes my day today. A chunk of bittersweet life wrapped in layer upon layer of the sweet stuff I truly love.

My bittersweet morning began around 3:00 am with Momma waking me out of my slumber with a lot of talking and groaning. A quick peek at the video monitor showed me she was confused, asking herself questions and trying to figure out where she was. She had left her walker and shoes on the opposite side of the bed from where she usually keeps it. Just that ‘little bit of different’ totally disoriented her from being able to find the bathroom just a few feet away. Willing my sleepy head off my comfy pillow, I headed downstairs to reunite her with her walker and gently point her in the direction of the bathroom. I sat in the chair in the corner of her room bleery-eyed and awaiting her return. She needed a little extra help with navigation for the return trip, but was soon tucked safely back in bed.

As I smoothed the covers over her, she looked around the room then asked me, “Am I in the hospital?” I assured her she was at home in her own bedroom and that I would be making her a yummy breakfast in a few short hours. It took about an hour for her to settle into sleep again, and then a little more time for ME to drift off into sleep once again.

Sanding finished! Applying primer coat of paint.

The sweet layer on my bittersweet start to the day came a little later in the morning. My granddaughters Mia and Noelle, and Natalie, a sweet girl Mia’s age that I dubbed my ‘honorary granddaughter,’ worked on an art project together.

[Actually, the sweet layer began a few weeks ago when my daughter rescued a roadside treasure from the curb and delivered it to my doorstep. My Beth is well known for her ability to turn someone else’s trash into treasure.]

Granddaughter Mia models the paint color

Yesterday, I set the girls up with all the supplies they needed to turn that discarded chair into an artistic treasure. First, I had them sand the old finish off of the chair and then give it a coat of primer.

Later they added a lovely coat of turquoise paint. Today they worked their collective artistic magic on the turquoise beauty as they embellished it with dainty painted flowers, curly vines and beautiful butterflies. I plan to clear-coat the elegantly appointed chair and place it in my garden as a lovely support for one of my pretty plants.

I had the girls paint outside under the shade of a nearby tree where their great-grandma could watch from the comfort of her chair at the kitchen table. I hoped she would enjoy the art show. But, no. Instead, she fussed about them getting paint on them and wondered aloud (over and over again), “What on EARTH are they doing?!”

As difficult as it was to listen to my mom repeatedly worry and fret, my grandmotherly heart was full to the brim with sweet joy as I watched my grandgirls have fun painting something that I will treasure for years to come.

While I tended to the after-supper kitchen cleanup, Momma watched through the kitchen window as my husband, our son, and a sprinkling of grandgirls were having a silly water balloon fight. She tapped her fingers on the kitchen table in a futile attempt to tell them that they needed to stop that foolish craziness. My daughter Beth tried to calmly reassure her grandma and help her understand that they were having fun, that everything was okay – to no avail.

For me, the bittersweet sadness in my mom’s anxiousness was wrapped in a lovely, sweet layer of my own contentment having my grandgirls and both my son and my daughter here at the same time. I relish the moments when we eat and play together as a family.

To help Momma relax, the water play was moved to the front of the house. Still, Momma worried aloud, “Where are all my kids?” With the exception of one granddaughter, all of them will leave tonight. Yes, my mom will anxiously wonder when they’re coming home. That makes me sad. It’s the bittersweet dark chocolate center to a lovely morsel of time wrapped in the milk chocolate sweetness of my being able to enjoy special moments with my grandkids in the midst of my caregiving responsibilities.

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?

Unspoken

Danielle Swett Olander describes herself on Facebook as an “Accomplished Instructor; Convention Exhibitor at Institute for Excellence in Writing (IEW) and Multitasker Extraordinaire at Olander household.”

An apt description. Though we’ve only met in person a few times, our friendship grows deeper by the day as we each take care of someone we love who has Alzheimer’s. Danielle is a family caregiver who watches over her father-in-law, Tim, who happens to be my husband’s and my close friend.

Danielle graciously gave me permission to post this Facebook essay on my blog. I know it will touch the hearts of many of my friends and followers whose lives are also impacted by this memory-robbing disease.

I grew up in churches that would allow you to say you had an “unspoken” prayer request. Usually it was something that was a little too private to share in public but that you desperately wanted someone to pray about. Or perhaps it was just to have something to say when it was your turn to share prayer requests. Today I have a little story about a different kind of unspoken request.

On Monday, the young lady who is helping me with Tim’s care dropped him off at our house around lunch time. He had a sandwich and was resting in his favorite chair. Our kids turned on a classic TV show, but he obviously didn’t want to watch it. I put out a chair in the driveway and suggested that he sit outside until the show was over. It was a beautiful day, the kind we endure January for around here. A little later I went out to the garage for something and didn’t see him in the driveway where he usually sits. I went back inside thinking perhaps I had missed him in the living room. When I didn’t see him there, I sent a child to the basement and another to the backyard. A third jumped on her bike to begin riding around the block. He wasn’t anywhere nearby. I realized that he had left without telling me where he was going.

I opened up Find My Friends on my phone and began a search for Tim. Thankfully he had his phone with him. A little blue dot “TO” appeared about 3 miles away, not far from his apartment. For the first time ever, he had decided to go for a walk, from our house all the way back to his apartment, 4 miles away. I called him and ended up bringing him back to our house where he declared he had done enough walking for one day.

Sometimes we know specific requests to pray for our friends. Other times, we simply bring them before God, knowing that he “knows what you need before you ask.” (Matthew 6:8) In our bowing before the Father, I know I have simply asked for his guidance, grace, or comfort for a friend, not knowing exactly what their need was. I know many of you are praying for Tim daily. You probably didn’t pray on Monday that he would protect him when he went for his “walking spree” (Tim’s words that day). But God knew what Tim needed. It gives me great comfort and strength to know that Tim’s care doesn’t rest completely on my shoulders. Thank you for praying for him.

Romans 8:26-28

[26] Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. [27] And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. [28] And we know that for those who love God all things work together for good, for those who are called according to his purpose. (ESV)

We all need an Advocate

An advocate is someone who can help you speak up so that your needs are heard, your rights are understood and your problems are resolved.

Momma and I took an ambulance ride to the hospital on April 30. Momma was in a lot of pain. A LOT of pain. She had a fever and she could not support her weight on her legs. In retrospect, there were a few signs I should have paid closer attention to, but the acute pain came on suddenly. She went from being able to use her walker, to needing assistance to get out of bed, to not being able to get out of her chair (or “off the throne”) in the course of just a few hours.

I must confess that there was a twinge of relief when I was told she was going to be admitted. It meant that someone else was going to help me care for her during this medical crisis. It meant that someone was going to help me make decisions. Continue reading “We all need an Advocate”

Art Therapy

It was therapy. It was love. Inspiration. Repose. Edification. Heart-to-heart sharing.

Today my hubby took a turn hanging out with Momma so that I could get away for a few hours to take my second Chinese watercolor lesson. Truth be told, it was much more than a painting lesson. Much, much more. Continue reading “Art Therapy”