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 are 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.

Are You the One in Charge Here?

Lately, my sweet mother has been more than a bit confused about her living accommodations, referring to our home as “this facility” and “this place.” Not long ago, she swept her hand out in gesture as if encompassing her living space and said, “Are you the one in charge of this place?” I told her yes it was our home and that Wayne and I both welcome her to live here. “Oh,” she replied, “are my meals and laundry included?” I assured her that they were. To which she replied, “Well, they haven’t fed me all day, and I think they’re stealing my laundry. I can’t find it anywhere.”

Not long ago, she was telling Wayne that “someone who works here” had given her some pills. She wasn’t sure who it was, but figured they knew what they were doing, so she took them. It was Tylenol, and it was me giving them to her just moments ago. Oh, and the “people who clean this place” and do the gardening around here just aren’t doing their job. The floors are always dusty. The gardens have so many weeds. “You should talk to them,” she insists.

I can watch Momma’s nighttime activity on a WiFi video monitor that sits on my nightstand. That’s a blessing because I know when she needs something…and a curse because sleep is interrupted quite often. On a few occasions, I’ve come down in the middle of the night to check on Momma because I could see on my monitor that she was crying. Sometimes it’s just confusion about where she is, but oftentimes it is her worrying about how she is going to pay for this place when she can no longer work and earn money. She’ll sometimes tell me that “they” are going to kick her out when her money runs out. On those occasions, I’ll sit with her for awhile and reassure her that she is loved, that she is retired and has plenty of funds, and that we will always take care of her no matter what.

One of Momma’s blue pots

Momma can make you smile with her wild tales about how she came to live here. On Saturday, a friend from church and her two young daughters spent the morning with Momma so that I could attend a Bible Conference with my husband. They had a delightful time, but, oh, the stories Momma told them while I was away. She enjoyed telling how this house was hers and that she shared it with us, describing how we had divided it up into her side and our side. And, of course, she had planted the gardens, adding to them over the years. (Mind you, she has only lived here since May!) She even shared with the girls that she had made her three blue flower pots when she was in kindergarten!

Of course, all of this is very real in Momma’s mind. That’s just a little taste of the confusion and disorientation that happens with the progression of Alzheimer’s. Not only is Mom confused about her accommodations, but also about the relationship of people to her.

“Mr. Winquist” and yours truly

Most days, she still knows us. Wayne is often referred to as “Mr. Winquist” – her term of endearment for him. Other days (mostly in the evenings), in her mind, I’m her sister Carolyn. As we look through picture albums or recall stories from her childhood, she tells tales of her youth as if I had been there too, sparing me the details with, “Well, you know. You were there too.”

My sister has been coming every other week or so to stay with Momma for a few days so I can get a little down-time. A few hours before each visit, I remind her that her daughter Vivian is coming. Sometimes she’ll give me a quizzical look and ask, “So, help me remember. Is Vivian my daughter? Or is she your daughter?”

On one of Viv’s recent visits, Momma came out of the bathroom and was looking for her Mom. Rather than remind her that her mother has been deceased for many years, Viv just went along with her and said, “Your Mom is not here right now. Can I help you with something?” Mom replied, “I just need to find my Mom.” I peeked my head out of the laundry room door and waved. Momma spied me and said, “There she is!”

So, in my mother’s mind right now, I’m her mother. That’s okay by me. She took good care of me for many years. Now, in this circle of life, it’s my turn to take good care of her.

 

Ice Cream and Car Keys

What irony that I am posting this reminisce on the very night that my mom got into a carton of ice cream behind my back. She had no recollection of where the empty carton came from, but her tummy remembers. Continue reading “Ice Cream and Car Keys”