Alzheimer’s through a Great-Granddaughter’s Eyes

Let me introduce you to Violet. This granddaughter has held my heart for 15 years now and I am quite certain she has a special place for me in her heart too. Any time we spend together is special.

Not only does she love me well, but she also has a special softness in her heart for her memory impaired great-grandmother. Violet goes out of her way to be a bright spot in my mother’s day as often as she is able. Most recently she wrote a few letters to her and asked me to slip them in her purse every now and then so she had something new to read. On other occasions she will come with me to visit her GGma.

Violet and I share in common a love for writing. I love reading what she writes and especially love finding her thoughtful notes sprinkled liberally throughout my house. On a recent visit, Violet picked up a pencil and a notepad and poured out some thoughts on paper about Alzheimer’s. I asked for permission to share them on Barefoot Lily Lady.

Alzheimer’s
By Violet Cynthia Schultz

Family becomes strangers
‘Home’ becomes lost
Books become confusing
Memories become a maze.
Guests become intruders
Flowers become weeds
Shouts become whispers
Old stories are forgotten
making them new again.

Yet the smile of a stranger
can still brighten up the day
Help from a friend becomes a blessing
when you’re lost.
The old photo album
jogs memories new and old.
The surprise intruders
become a highlight of the day.
The countless weeds
spark the old passion of gardening
And the whisper of a voice ensures
comfort, rest, and security.

Change is in the Air

 

God used last year’s hospitalization to help me see Mom needed to live with us.

Just over one year ago I wrote, “Honoring Your Parents: Nursing Home or Your Home?” (I invite you to read it here.) In that piece I endeavored to describe the process which had guided my decision-making related to caring for my mother as she slipped further and further into the horrible world of memory loss. Countless decisions have been made since moving my mother from Milwaukee to our home in Fitchburg. Each decision to be made along the way was generally preceded by some sort of adversity which required a change. We prayed about each change, each process, and each decision. Our faithful God always answered, shedding light on each uncertain step.

Change is in the air once again.

Mom’s advancing Alzheimer’s and a few recent difficulties have made it abundantly clear that we need to prepare for what the next level in mom’s care might be. There have been many “nudges” toward planning for the possibility of mom’s future care taking place outside of our home setting. But three things in particular:

  • A gentle nudge in the form of a well-timed question from Diane, mom’s palliative care nurse practitioner. “So, have you considered what the next step in your mom’s care might look like?” We had a good chat about that, and she gave me several helpful suggestions.
  • My hubby’s trip to India. I had to ask myself what I would do if something happened to him and he could no longer help me. Even though my family and friends rallied to help me out during his trip, it became very clear that caring for mom on my own would be at too great a risk to my own health and welfare.
  • My own frailty. I took a fall down a short flight of stairs in my own home. Aside from a scrape to my leg, a few sore muscles and toes, the greatest injury I sustained was to my own pride. The fall served as a wake-up call causing me to consider how Wayne would care for mom if something happened to me.

In the past year, I’ve looked at the websites of many assisted living places, have talked with a few representatives on the phone, traded emails with yet a few more, and even toured three that I liked and thought might be able to at least provide some respite care. In each case, I could not imagine my mother living there. After my little chat with Diane, I looked into a newer one she suggested and rated very highly.  BeeHive is a 16-unit specialized memory care facility designed to look and feel very home-like. It is ideally located in Oregon just a few miles down the road from us, and about a mile from the nursing home where my brother resides.

Wayne and I scheduled a visit in early September before his trip to India. I was favorably impressed as I watched staff interact with residents. Compassion and respect were palpably present. We met Gina and Andy, two of the owners, and felt their pride of ownership and desire to serve their residents.

Standing on the sidelines, I watched one sweet lady receiving a hand massage. As the aide gently applied lotion and stroked her delicate hands, she looked into this resident’s eyes and spoke with her like she was a familiar friend. I knew in my heart this was the right place. A puzzle was in the works at a nearby table and I could hear one resident talking to another in friendly banter. Yes, I could definitely picture my dear Momma sitting at one of the tables, working on a puzzle and telling (or re-telling) one of her many tales.

After some discussion and prayer, we decided we would put down a deposit to reserve a place for mom. She is currently number four on their wait list. While it is still my heart’s desire to keep my mom at home with me until God calls her to her heavenly Home, I have great peace knowing I have another level of care reserved for her. My greatest comfort comes in knowing the One who is guarding our steps as He walks before us paving the way for whatever our future holds.

I know in my heart that my dear mother would skip along to heaven tonight if she could. Nearly every day she tells me so. Momma’s greatest comfort comes in knowing that Jesus promised He has a placed reserved for her in heaven.

Five Minute Friday: Balance and “Oasis Moments”

This post was brought to you (a day late, I know) courtesy of Kate Motaung’s blog Five Minute Friday and the word “balance.” Writers set the timer for five minutes and then free write on the word of the week. Check out more great posts and find inspiration for writing here at Five Minute Friday.


Things have been quiet on my blog. Good sleep is rare. Interrupted at best. Most days I live life in a sleepy fog. In my exhaustion, I’m having trouble staying focused enough to write.  A few of my friends have recently heard my silence and inquired as to my well-being.

My friend Sue wrapped me in a big hug on Sunday and told me that she was quite concerned. She had observed that caregiving seemed to be taking its toll on me, noting that I looked really tired. I was not the least bit offended by her basically telling me that I looked terrible. It’s really hard to cover up exhaustion. God knew I needed this confirmation of what I already knew. Sue’s concern and assurance of prayer meant the world to me.

Rita caught up with me a few minutes later and kindly inquired as to how momma is doing. This sweet friend is known for her ability to see a need and step in to help. I have been on the receiving end of her prayers wrapped in practical ministries of help. Her loving and thoughtful ways have often helped me find balance as a caregiver as she sits with my mom while I try to get some sleep, or hangout with my grandkids, or take my brother to a doctor’s appointment, or go out to dinner with my husband. Her kindness refreshes my spirit.

Yesterday I heard the familiar “chirp” of my phone indicating that I had received a text message. My heart smiled when I saw it was from my friend Barb – also my sister in Christ, and former co-worker (from way too many years ago).

“How are you and your momma doing? Haven’t seen anything on FB lately.”

It’s been more than 20 years since Barb and I worked together, but we’ve managed to keep in touch via Facebook, chats via Messenger, and occasional lunch get-togethers at a restaurant somewhere between my here and her there. It has been awhile since I’ve been able to get away and have lunch with Barb, but her little “I noticed you” via text meant so much. It felt good to sit in my favorite chair wrapped in a soft blanket and “chat” for a bit about what’s going on in our lives.

Amazing how a timely word from a friend can bring a little balance to your life when life feels weighed down and precariously listing toward one side.

This morning a message from another friend, Danielle, popped up on my phone.

You’ve been in my prayers a lot recently, especially since I haven’t seen too many posts about your mom. I know I didn’t post much about Tim as things got worse, so I’m assuming things are really hard right now.

She was right. Danielle knows firsthand what life as a caregiver can be like, as she takes care of her father-in-law in his struggle with memory loss. She walks this really hard road a few steps ahead of me and knows how to pray…and she does pray.

It’s not just these four friends who’ve helped me find balance. It’s my hubby who helps in countless ways, the friend who buys me a coffee on a whim, or the one who pops a surprise care package or a sweet card in the mail. Or the thoughtful neighbor who recently rang my doorbell and asked me to point him in the direction of something that needed to be done in my garden.

I’m so thankful for each and every one of the wonderful people God has put in my path. Through your prayers and acts of kindness, God refreshes my soul with “oasis moments” and helps me find balance in my life as a caregiver.

 

 

Waking Up on the Wrong Side of the Bed

Sometimes my Momma gets up during the middle of the night and wanders around in her room – typical “sundowning” activity. From my comfy bed, I can keep an eye on her via camera on the monitor I keep on the nightstand. I’ll sleepily watch as she opens and closes drawers, switches the contents of one drawer to another, fiddles with knobs, looks through books and photo albums, and arranges and rearranges things in her purse. Once she is satisfied all is right in her world, she’ll generally go back to bed on her own and I can go back to sleep knowing she is safe. That having been said, if I see her walker on the left side instead of the right side of her bed, I’ll sneak down after she has drifted off to sleep and quietly switch it (and her shoes) over to the opposite side of the bed.

img_1028-1The familiar idiom, “waking up on the wrong side of the bed” usually refers to someone having a bad day right from the start. In Momma’s world of Alzheimer’s, it is entirely possible to very literally “wake up on the wrong side of the bed.” It’s interesting how a seemingly teeny difference of throwing her legs over the opposite side of the bed when she awakens will cause her day to begin awry.

Waking up on the wrong side of the bed means she sees a different view and doesn’t know where she is at all, and will often cry out, “Where on EARTH am I?”

Waking up on the wrong side of the bed means she won’t know where her shoes are. She’ll fuss and fret and say repeatedly, “Where are my shoes? Who took my shoes?”

img_4948
A very important door to be able to find.

Waking up on the wrong side of the bed means she will have great difficulty finding her way to the bathroom situated just a few steps away from her bed. Instead of being down the little hallway right in front of her, she’ll have to walk those extra steps around the end of her bed, causing her extra discomfort and pain in her already painful feet and knees, which definitely increases her risk of falling.

Moving her walker to the ‘right side’ of the bed is a very small kindness I can do to make her daily journey with Alzheimer’s a little more familiar, navigable, and comforting.

What small acts of kindness make your loved one’s world a little easier? Please do share in the comments section.

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.

Me and my guy in NYC

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 Dream 2
Photo credit: tsomides.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.

My Dream 1
Art Therapy

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.

 

Dirt Therapy
Dirt Therapy

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?

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.

 

 

Signs Along the Alzheimer Way

Every night it’s the same question.

“Where’s my toothbrush?”

My answer is always the same.

“Your toothbrush is in the bathroom. Would you like me to get it ready for you?”

Her response is always the same.

“Yes, please, but where’s the bathroom?”

It’s especially sad because, for the most part, her world is two rooms of our house connected by a short hallway. She passes that bathroom multiple times a day, but still has to ask where it is.

Alzheimer’s makes it nearly impossible for her to store new information.

As many Alzheimer caregivers have observed, signs and labels can help. Whether it’s labels on cabinet doors and drawers, Post-It notes with names on photographs, how-to or directional signs, or little 3×5 card reminder notes on the bathroom mirror. These can be very helpful tools to help those who are memory challenged navigate their living space, especially in the earlier stages of the disease. In some cases, as with my mom, it can also help in the later stages.

There are four doors in that little hallway of Momma’s world. Doors can be very confusing to someone challenged in their ability to remember. Here’s a taste of how we tried to help bring sense and order to my mother’s world.

Door #1
Door #1 is a door leading to the basement stairway; we have a flip-lock on that door to keep her from taking an inadvertent middle of the night tumble. We also made a simple “Basement Playroom” label for the door, so she is less disturbed when her great-grandkids go down there to play.

Door #2
Door #2 leads to the attached garage. She has no need to be in there, but I created a little sign on a Post-It note that helps her identify this mystery door and satisfy her curiosity. The note on that door also tells her that her gardening tools are stored in there, as this answers one of her most often asked questions as to where all of her gardening tools are located.

Door #3
Door #3 is a storage closet with bi-fold doors which housed my brooms, vacuum cleaner, dustmops, and cleaning supplies on one half, and oversize kitchen-y stuff and cookbooks on the other half. The first half of that closet is now Momma’s clothes closet, and has been labeled “Charlotte’s Clothes”…which sometimes helps her find her stuff.

Door #4
Door #4 is the most often needed room; the bathroom we have fixed up as best we can to meet her mobility needs. To help Momma with her daily “where’s the bathroom” dilemma, I asked my wonderful friend Jo to paint a special order sign for me. She calls her business (and herself) the White Hen. Jo’s artistic specialty is painting lovely hand-lettered signs on reclaimed wood. Right now she is swamped with work painting cute signs for a growing restaurant that’s popping up all over the south. (If you ever find yourself having a delicious lunch at a Maple Street Biscuit Company, look around, you’ll see Jo’s handiwork all around you.) Busy as Jo has been, I’m grateful she took the time to bless me with this sign to place over the bathroom door.

Door #4
Whenever nature calls, Momma still asks, “Where’s the bathroom?” But, now, she’ll often look up at the sign and exclaim, “Oh, yes. There it is!”

As I’ve said before (and I’ll say again), it’s little things like this that help our loved ones find certainty in the very uncertain world of memory loss.