Momma and I sat in her bedroom talking tonight. I couldn’t help but notice she was being extra sweet and using the tone of voice one sometimes reserves for meeting a new friend. As I helped her get ready for bed she eyed me keenly, then said, “I don’t believe I know your name.”
I moved a little closer to my sweet mom and then replied, “My name is Cindie. What is your name?”
“Well, I’m Charlotte. I’ve always been Charlotte,” Momma replied matter of factly as she flashed one of her lovely smiles.
Putting my hand atop hers, I gazed into her brown eyes and proffered, “Pleased to meet you, Charlotte.”
“It’s nice to meet you too, dear.”
I’ve sort of dreaded this day, knowing Alzheimer’s would eventually snatch away my identity from her brain. I imagined that I would be utterly and completely heartbroken. Oddly enough, I wasn’t. For some reason it didn’t sting as much as I thought it would.
Today I wasn’t the daughter, as much as I was a new friend helping another friend.
Late to the party, but I am joining (on a Monday) the Five Minute Friday writing community, hosted by Kate Motaung, for our weekly writing adventure. Please click here to learn about Five Minute Friday. This week’s prompt is, “Where.”
Where Am I?
Momma asks this question every single day. Every. Single.
I usually answer, “You’re at my house, Momma.” She will then peer about the room with a furrowed expression, and say, “Where?”
My sweet mother is hard of hearing, so I often must repeat
what I said. However, it really does no good to explain to Momma where she is or why she’s here. But I do anyway. While she will soon forget, and it
really doesn’t matter to her, it matters to me. When I tell Momma that she is
here because I love her and want to take care of her, I need to hear myself say
that even more than she does. In saying it out loud, I am reaffirming my
purpose in my heart.
She will ask again. And again. And again. Each time as
though it were the first. It’s at times such as this when I must I remind
myself that Momma truly feels lost.
“Where is my purse?”
Where is my money?
“Where do I buy food?”
“Where is the bathroom?”
“Where are the kids?”
“Where are my shoes?”
These, and so many other “where” questions lurk in the worry corner of her mind. Lately, one of her most frequently asked questions is
“Where is my family?”
When she asks this question, she’s really not thinking about me, or her other children, or even her husband. Momma wonders when her parents are going to come and get her and take her home. It accomplishes nothing telling her that they’re already in heaven. If I do that, she stews and is angry that no one told her that they died. Instead, I say, “They’re not going to be able to come today.” Then, I answer her question with my own question, “So, what was your favorite memory with your Dad?” I absolutely love it when she reaches way far back into her cache of childhood memories and pulls out a special one.
While it is heartbreaking to hear Momma struggle with all of the where’s in life right now, I know she has a hope for a future “where.” A place where every tear will be wiped away, every worry and fear erased, and where pain and earthly sorrow will be gone forevermore. Momma is looking forward to her heavenly home – whereno more memories will be lost to Alzheimer’s.
I love Christmas. My husband would tell you that sometimes I go a little too crazy with the cleaning, baking, gift-wrapping and preparations. And he would be right. But the joy of a family gathering together makes it all worthwhile.
Our Christmas was different this year. Very different. In fact, I can think of seven differences right off the top of my head.
Difference #1 – I didn’t go crazy decorating this year.I put up and decorated our Christmas tree. And that’s it. And I didn’t even hang ALL of the ornaments. No garlands and lights. No wreaths. No candles, or anything else lurking in the bins marked “Christmas” in my storage area. I didn’t even put out Christmas napkins or plates.
And, you know what? I still loved it.
Difference #2 – Less Sugar. LOTS less sugar. My children and grandchildren have grown accustomed to favorite home-baked cookies and candies being stacked one atop the other in a special set of aluminum stacking trays I inherited from my mother-in-law. Every year each of five layers of trays included our favorites: Snowball cookies, candy cane cookies, chocolate fudge, peppermint patties, and soft ginger cookies dipped in white chocolate. Eyes would open wide whenever I’d bring the tray full of goodies out of the 3-season porch (our second fridge in the winter). Everyone knew yumminess was contained within those five layers.
This year, we’re all more conscious of sugar and what too much sugar can do to the body. I made one sweet treat and skipped baking Christmas cookies (with the exception of a batch of gluten-free snowball cookies for my hubby). There also weren’t candy dishes throughout the house filled with M&M’s and chocolate candies.
We still enjoyed Christmas – sans the sugar high.
Difference #3 – The guests. The people gathered were a sweet mix of family and friends. Our daughter and her family were part of the usual cast of characters at our celebration, but our son and his family could not come because they were using this time off of work and school to go on a family vacation. This year our gathering included our new friends and adopted family of the heart Herim and Waldely, and their sweet daughters Fabiana and Alexa. If that weren’t blessing enough, as a bonus, our celebration also included Herim’s visiting cousin Anna and Anna’s nephew Luigi.
In addition to hearing a lot of Spanish floating around the room, our little family relished spending time with our new friends as they shared with us more about their country of birth, Venezuela. We learned about the similarities and differences in customs, and laughed together over the cultural differences that one stumbles upon when being immersed in the language and traditions of the United States. Waldely shared the humor she found when Americans are introduced to a new food they don’t particularly like. We don’t just come out and say, “I don’t like it.” With a little raise of our eyebrows, we say, “Mmmm…interesting.”
I only wish I had taken pictures!!
Difference #4 – The meal. It was an early lunch, rather than an evening meal together to accommodate everyone’s schedules for the rest of the day. It was rather simple fare with ham and cheese sliders on the menu, rather than the egg-laden brunch casserole I had originally planned. There were a few equally simple go-withs such as deviled eggs, a little fruit tray, a few cut-up veggies with dip, potato chips, pickles/olives, and the like. Waldely added quesillo, a delicious traditional Venezuelan flan to our buffet spread. Oh, so yummy! Estaba delicioso!
Difference #5 – Gluten Free Options.In our family, we traditionally enjoy what we call “Wisconsin Buns” on Christmas Eve. It’s a recipe handed down to me by my mother-in-love. She made it almost weekly in their family, but I reserve making this special (highly calorific and very bad for you) “coffee cake” for Christmas Eve morning (and will also make it as the birthday treat for any family member who requests it). This year I also made up an experimental batch of gluten-free Wisconsin Buns. Not the same by any stretch of the imagination, but a surprisingly tasty alternative treat for my husband, who now finds allergies to be a daily struggle.
Difference #6 – The shopping.All of our shopping was done by Wayne on-line this year – mostly via Amazon. No trudging around in malls. No being tempted by impulse purchases placed strategically at every check-out line. The kids and grandkids made lists on their wish-lists and the purchased gifts came to our door only needing to be wrapped. I love watching the faces of each grandchild as they open a gift they really wanted.
Difference #7 – Momma was here, but absent. Though our house was full of people laughing and the sounds of children playing, Momma pretty much missed all of the Christmas activity as she retreated to her room and slept throughout the day. Last year she was able to join us in the family room and watch in delight as her great-grandchildren opened gifts. This year, Alzheimer’s has noticeably taken away her delight in all things social. Her inability to participate in our celebration was a little sad. In spite of that, I’m glad her number on the wait-list hasn’t come up at the memory care facility we have reserved for her. It brought me peace of mind being able to peek in on her in our home.
If Momma had a wish-list for next year’s Christmas gift, heaven would be at the very top of her list. No more tears or confusion. No more memory problems. No more excruciating knee problems. And together with her Lord and Savior FOREVER!
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.
“For when the way is rough, your patience has a chance to grow. So let it grow, and don’t try to squirm out of your problems. For when your patience is finally in full bloom, then you will be ready for anything, strong in character, full and complete.” James 1:3-4 (TLB)
Awakening from a decent night’s sleep, I pushed ‘snooze’ to buy myself just a few more minutes beneath the covers before throwing on my workout clothes, grabbing a quick breakfast and heading out the door to the gym. I remember being grateful for six hours straight of good sleep. The serenity of my cozy space beneath the blankets was quickly invaded by the sound of Mom’s voice on the video monitor on my nightstand. I distinctly heard her say, “Oh, no! Oh no! Oh no-no-no!”
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.
The 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?”
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.
After lunch today Momma asked me to trim her fingernails. I had been refused several times lately when it had been my suggestion. Today it was hers, so I dropped what I was doing and took care of that request.
As she happily admired her shorter nails, I asked if I could please wash her hair.
“Again? You want to wash it again,” she mildly retorted.
Now that her hair is growing longer, she enjoys twirling the ends around her fingertips, adding a little 60’s flip to her hairdo. So I countered, “Yes, it has been awhile and you’re losing your pretty curls.”
It worked. A few minutes later she was humming a contented tune while I was blow drying her pretty silver locks.
Today I’m thankful that this little thing made her happy for this little moment in time.
There are many times when I walk into my mom’s room and she has this befuddled look on her face. I watch as her eyes wander slowly around the room, studying each piece of furniture, the window, and the doorways. Her eyes will land on pictures of once familiar people and a blankness has slipped over her eyes like a mask – no light of recognition.
In these moments Mom will often ask,
“How did I get here?”
I no longer answer by explaining, “Well, about two years ago I moved you from your home in Milwaukee so that you could live with me and I could help take care of you.” I don’t tell her she has Alzheimer’s. Unless she specifically asks, we don’t dwell on the fact that she can no longer handle money, make decisions, cook, drive, or take care of herself.
That’s too much information.
The answer that brings her the most comfort goes something like this:
I’ve heard Mom ask that question since I was a toddler. She still asks this question whenever she surveys the bread crumbs and potato chip crumbles all over the floor surrounding her chair at the kitchen table. It’s best not to be too forthright and tell her that SHE is the guilty party. It’s the truth, but the blunt truth would only injure her fragile mind. Many inadvertent hurts later, experience has taught us that it is best to come at the truth from the backside. “Mom, messes happen. No worries. Let me get out the little broom and we’ll sweep it up right away.”
Hiding the mess
My mother’s use of Kleenex tissues is almost exponential. In addition to wadding them up and stuffing her pockets and purse, they happen to be her favorite clean-up tool. Without supervision, she will wrap anything and everything in tissues that she wants to throw away (in a rare moment of clarity, she admitted to disposing of her $1,200 hearing aides in this way).
If I just hand my mom a banana to snack on, she will create a little mummy-wrap for the peel before tossing it in the trash. Surely it is a desire to help which fuels this behavior – to be busy helping is in her DNA and it bothers her to be idle. In talking with others who care for a loved one with Alzheimer’s, this behavior is common.
Our experience thus far in caring for my mom has taught both my husband and I that it is best to address something that is bothering my sweet momma right away, rather than let her obsess over things. By way of example, we have learned to clear the table right after supper, or she will begin wrapping up everything in Kleenex and use still more Kleenex to wipe out the dirty dishes and clean the table. While my hubby and I clear the table, we enlist her help by offering her a warm, wrung out washcloth so she can feel useful in cleaning up after the “messy people in this house.”
Most evenings Mom wants to help with the dishes. If it’s only a few plates, I’ll let her stand at the sink to dry. It makes me nervous though, because her legs are bowed and pretty unsteady, so we improvise a bit by bringing the dish draining rack to her place at the kitchen table. It takes three dish towels to do it this way: one under the dish drainer, one to use to dry dishes, and one to set the dried dishes upon. It does take more time than if I do it myself, but it makes my mother feel as though she is contributing to the household duties in a meaningful way. You can see contentment in her face as she helps, and that makes any inconvenience worth it all.
Spring keeps teasing us here in Wisconsin, drawing us out of our houses for walks in the sunshine or a little time in the garden, and has us washing the salt off of our cars and sweeping out the garage. Then, BAM! Winter is back!