BeeHive is the name of the wonderful assisted living memory care where my mom lives. On Thursday evening BeeHive certainly lived up to its name with the buzz of excitement as families and friends of the residents and staff gathered at the hive for a Christmas party.
The gathering had all the makings of beautiful affair with great food, fantastic music, a little dancing, and opportunities to meet and greet the loved ones of the 16 residents I have come to love.
Momma couldn’t hear the fantastic music because she is really hard of hearing, but she had her fill of snacks and pleasant conversations. I think she and Dolly enjoyed themselves. They retired early, as crowds aren’t their thing. As is the way with Alzheimer’s, Momma won’t remember a thing about the party in the morning.
Sometimes there is only joy in the moment for our loved one, and memories we make together are ours alone to cherish and remember.
How do you say ‘goodbye’ to a loved one with Alzheimer’s? I’m not talking about the final goodbye at this moment, but the daily goodbyes when you have to leave your loved one.
I usually spend a few hours with my mom each day. She really doesn’t like to see me leave and, much like it may have been when I was a toddler and she left me with a babysitter, she can get a bit sulky and fussy. I’m discovering there is an art to making those daily goodbyes a little less stressful.
The number one thing I have learned is never say, “I have to go home now.” Saying the word “home” is an involuntary trigger for her to feel unsettled, as she constantly wants to “go home” too.
I have discovered that it’s really important to give her a reassuring hug and tell her that I love her, but sometimes that’s not enough. Here are a few other tactics which help make daily goodbyes less stressful for my mom:
I don’t mention how long I’m going to be gone. Instead of “I’ll see you tomorrow,” I say, “I’ll see you a little later.” Even if I’m going to be gone for a few days, it’s really important to offer her the hope that I will be back soon.
If she asks where I’m going, I sometimes say, “I’m going to work, but I’ll be back later.” While I don’t really go to a job, I am not straying far from the truth because I really DO need to go home and get some laundry and housework done.
If at all possible, I try to leave when she is resting comfortably in her bed. She may look for her family when she wakes up, but she will be looking for me expectantly, rather than feeling like I have abandoned her.
Momma’s comfort item is her dolly. I try to make sure she has it in her lap and is occupied with “Dolly” when I slip away.
Snacks help. I sometimes leave a cookie on mom’s windowsill. Even if she sees me walking to my car (her window faces the parking lot), the next thing she will see is her special treat and then all is well.
Loving and gentle touches help her relax. You know how it feels when someone plays with your hair, or runs a brush through it? It’s an amazing feeling. I try to be there when mom finishes her twice weekly shower, as she is usually not a particularly willing participant in that activity. The minute she sees me after she is wheeled out of the shower room, she looks SO relieved. I take those post-shower moments to blow-dry her hair and gently brush it.
Momma still likes to exercise her own independence when moving about. It is her right to do so, but it does sometimes result in a fall. Momma had a “doozy” of a fall a few months ago. No one is exactly sure what happened; they just heard her calling “help me” and found her lying on the floor on her side, trying her best to right herself. Thankfully, with a little help, she was able to get back into bed without emergency intervention. In the days following, she was sore and showing signs of having bruised or fractured her tailbone and ribs. I opted not to have her x-rayed, as the results might give us a diagnosis, but would not change the treatment plan. At this stage in her illness, Momma’s plan is for comfort measures only.
Mom was in a considerable amount of pain following the incident. Hospice recommended we start giving her some stronger medication to help manage the discomfort and quiet her anxiousness. A low dose of morphine was started, but wasn’t particularly effective; plus, mom seemed to have an allergic reaction. Once switched to hydromorphone, she was very sleepy, but pain was much better managed. Before long, Momma was back to tooling around in her wheelchair visiting with the other residents and “borrowing” seemingly abandoned baby-dolls and stuffed animals to care for in her room. That was the “upside” of administering narcotics.
The “downside” is that narcotic medications cause constipation. With an injured tailbone, constipation can become a formidable and painful foe.
Another “downside” is that the medication also makes her more confused – so much so that her speech comes out in an incoherent, rambling, jumble of meaningless words and random thoughts. This confused speech is a condition known in the world of dementia as aphasia and is often referred to as “word salad.” Usually a symptom first noticed in earlier stages of the disease, aphasia makes finding the right word very difficult. It grows progressively worse as the disease marches on, complicating oral and written communication, making interpreting someone else’s words in a conversation or reading a sign frustratingly difficult.
The most frustrating “downside” is non-stop chatter. Usually fairly quiet and non-conversational at the dinner table, the medication caused Momma to talk non-stop. She barely came up for air between one string of jumbled words and another. Mom’s usual table mates at lunch grew very weary of her nonsensical babbling, with one of them growing impatient enough to take a frustrated swipe at mom then slam her fist down on the table demanding, “Please! Someone just make her be quiet!” Thankfully, the impatient neighbor (not the one pictured below) missed in her effort to lash out at her too-gabby neighbor, and I was able to move mom out of arm’s reach and help her focus on eating her lunch.
Narcotic medications were not necessary to bring on the word salad of aphasia, as it was already rearing its ugly head along with other symptoms which signaled the progression of Alzheimer’s. The medication just tossed the salad, so to speak. If you would like to learn more about aphasia (and 3 other A’s: amnesia, apraxia and agnosia), I highly recommend reading the article “The 4 A’s of Alzheimer’s Disease.
Each day after lunch, Mom and I usually sit quietly together in her room watching all the goings-on outside of her window. There is so much to see: cars and trucks as they drive in and out, people who come and go, the construction happening next door and (best of all) the birds at the feeders just a few feet away.
Today sweet Carol stopped by for a little after lunch visit. Without a word, Carol took me by the hand, urging me to rise from my chair and take a walk with her. I have taken many such walks with Carol, so gave Momma a quick hug and told her I’d be right back. Carol gave my hand another insistent tug and off we strolled hand-in-hand. As I left the room Momma suddenly addressed our friend Carol in an obviously jealous tone of voice blurting, “Hey! That’s MY Momma!”
Here’s a photo of a sweeter moment for Momma and her friend Carol.
Did you ever lose a favorite recipe? You know the kind I mean: the recipe card that has been in your recipe box for years and is now a bit tattered and stained from years of use. Well, I recently wanted to bake a batch of cookies I’ve been making since my kids were little, but couldn’t find that handwritten recipe card anywhere. It was one of those recipes copied from someone else with my own “tweaks” scribbled in the margins.
I searched a few of my recipe books and found a similar recipe. It had all the right ingredients, so I mixed up a batch and baked them for my mom’s friends who live with her in assisted living memory care. The cookies baked up a bit thin and crumbly. The ingredients were right, but were obviously not in the right proportions. My friend Lola’s husband is one of the residents who REALLY liked the not-quite-perfect cookies. She heard my lament about losing my recipe card and went home and searched through her cookbooks in an effort to find the recipe for me. Imagine my delight when she surprised me yesterday by bringing in a church cookbook with a recipe that looked to be closer to the ingredient proportions of my tweaked recipe. Unlike my lost recipe, this version had nuts and didn’t have chocolate chips in it (but that problem is easily remedied).
YAAY! I couldn’t wait to give the recipe a try.
Now, imagine my excitement this morning when I stumbled upon a forgotten blog draft I had created back on July 9th when I had last baked the cookies for my friends at BeeHive. Someone had asked for the recipe, so I had actually typed out my tweaked recipe with the intent of posting it on my blog.
Well, here it is!
½ c. butter (1 stick, softened)
½ c. shortening (or another stick of butter, which I prefer)
½ c. corn oil (or canola oil)
½ c. coconut oil (I use solid, but oil would work too)
1 c. brown sugar
1 c. granulated sugar
3 c. flour
1 t. salt
1 t. cream of tartar
1 T. vanilla extract
1 ½ c. regular oats
1 c. flaked coconut
2 c. Rice Krispies
2 c. semi-sweet chocolate chips (variation: use a combination of semi-sweet, milk chocolate, dark chocolate, butterscotch chips)
In a large mixing bowl, combine butter, shortening, corn and coconut oils, brown sugar and granulated sugar. Beat with electric mixer until creamy. Beat in flour, salt and cream of tartar, adding egg and vanilla extract until well combined.
Stir in oats, coconut, cereal, and your choice of chips. Stir until blended. Chill dough for a couple of hours. Scoop chilled dough (~ 1 T of dough) onto ungreased or parchment-lined baking sheets, leaving room between cookies for dough to spread a bit.
Bake at 350 ℉ for 12-14 minutes – until lightly browned on edges. Let set on baking sheet to cool for 10 minutes – cookie will continue to bake and set-up a bit. Remove from cookie sheet to cool completely, then store in air-tight storage container.
Note: the dough freezes well. I place the rounded scoops on a cookie sheet, then place in the freezer until hardened. I then put the frozen dough balls in a ZipLoc bag and freeze until ready to bake.
There is a lesson for my life in here somewhere. Sometimes my life contains all the right ingredients: church, family, personal Bible study, friends, prayer, ministry, housekeeping, gardening … and the like. But oftentimes the proportions are just not quite right. When I start feeling a little spread too thin and “not quite right,” nine times out of ten, I find the time spent in personal Bible study and prayer have diminished over time. Putting those ‘ingredients’ in the proper proportions in my life allows all the other priorities to meld together into a life that is truly satisfying and sweet – God’s ‘Best Ever’ for me.
At my sort-of-annual physical, my doctor asked me questions related to my caregiving responsibilities, which led to questions related to my mom’s diagnosis of Alzheimer’s. One of those questions was, “Does your mom still know who you are?” It’s a good question – one that is a little hard to answer. I usually start with, “Yes. And no.”
Most days I think she knows that I am family. Her face still lights up when she sees me. She knows that I love her. I don’t believe she usually thinks of me as her daughter though, as she usually refers to me as her mom, and every now and again her sister. Other times (this is my favorite), her best friend. Last week, though, she came up with an entirely new one that tickled my funny-bone a bit.
Mom’s hospice nurse was giving me an update when my sweet mom wheeled herself up to where we were seated and apparently decided she had better make some polite introductions. Speaking to her nurse she said, “This is Cindie. She’s my longtime neighbor.” Of course, her nurse knew the truth of the matter, so we both just smiled and agreed with my mom. Mom reached for my hand and brought it closer to her, then placed her hand over mine and said, “Right? We’ve known each other forever. We go waa-aay back, don’t we?”
So stinkin’ sweet.
“Yes, Charlotte. We go WAA-AAY back.” With a twinkle in my eye I added, “In fact, I think I’ve known you my WHOLE life!”
After lunch today, Mom’s sweet caregiver Nicole gently applied pain cream to mom’s painful knees. I had been busy putting things away in Mom’s room and returning things that she had gathered from other rooms. As soon as Mom saw me approach, her eyes lit up with gratefulness that I was there. Nicole asked Mom who I was, to which Mom replied, “It’s her.” Pressing her a little more, Nicole gently said, “What’s her name? Could you introduce me to her?” Momma thought for a few seconds, but couldn’t. Nicole quickly restored her dignity by saying, “Oh, yes! I remember! You told me she’s your daughter and her name is Cindie!” Momma nodded and smiled.
After a bit of small talk, Momma wanted to take a walk – which means tooling around the building in her wheelchair. I followed behind, sometimes holding onto her wheelchair. At one point she reached back and put her hand on top of mine and said, “I’m just making sure you’re still here.”
My car ‘dings’ a gentle reminder when it needs refueled within the next 50 miles. My hubby usually does this for me, but today I’ll need to care for this task myself because I’ve ignored the dings a little too long.
My Dad had always filled Mom’s gas tank too. When Dad knew he was losing his battle with cancer, that’s one of many things he taught my mom how to do. She tried a few times after he left for heaven, but then found a gas station that would send an attendant out to pump the gas for her for just a few cents more per gallon. My brother Brad thought it was silly to pay extra, so he tried to show her how to pump gas too. Mom just couldn’t remember the steps. Brad didn’t have his own wheels anymore, so didn’t mind filling the tank for her so he could buy himself a cup of decent coffee, a donut and a pack of smokes.
Today I confidently pulled up to the gas pump to fill my own tank and was happy to remember this recently learned factoid: there’s a little left or right arrow next to the gas pump symbol on your dashboard’s fuel gauge – it tells you which side of the car your gas cap is on. I would never have to turn around and pull up on the other side of the pump again. Cool, huh?
My glib confidence came to a screeching halt when I reached for my credit card. Now, I only carry two credit cards, yet I was stumped. “Hmmmm, I could text Wayne and ask him.” But that would be embarrassing. He has reminded me time and time again which one to use to purchase gasoline. How could I admit that I didn’t remember again?
I used to keep a reminder sticky note on the card, but that had fallen off somewhere along the way. After a few minutes of inner debate, I chose one of the cards and got out of the car. It had been so long since I pumped gas I had to read the instructions on the pump. Twice. I felt the eyes of the kid at pump #3 watching me, trying to figure out if he should assist the confused lady at pump #4. I felt embarrassed.
Was this how my mom felt when she knew she was forgetting things?
I pumped the gas and printed the receipt for my hubby’s use in updating our budget spreadsheet, then headed to visit my mom. Hot tears overwhelmed me as I drove those 9.9 miles. I cried because I was pretty sure I had guessed wrong on the credit card. I cried because I now understood how helpless Momma felt. Mostly though, I cried because forgetting things scares me. I’m walking this road of memory loss with my mom and I know it’s hard (and sometimes harder) on the one who is the caregiver. It truly grieves my heart to think that my husband, daughter or son, or a grandchild may walk this road with me some day.
I sat in the parking lot of mom’s assisted living facility and blotted my tears before heading in to see her. My heart smiled as Mom exclaimed a little yelp of joy when she saw me, and even told the friends seated at her lunch table, “See that lady there? She’s my best friend.”
After that heartwarming visit, I made a quick stop at a nearby gas station to buy a cup of coffee, then headed another block or so to the nursing home where my brother resides to visit a bit and bring him a cup of his favorite coffee. He was sleeping, so I left his coffee on his nightstand and headed home to get busy on my laundry. When I arrived home I gave Wayne the day’s receipts and was bummed to learn that, yes, I used the wrong credit card for the gas.
Alzheimer’s is a frighteningly hard path in life, but my walk alongside Momma has also given me firsthand experience seeing how God walks with us each and every step of this road paved with memory loss. While an underlying concern of personally having to experience this disease is always present, I have an even greater confidence God will give those I love much wisdom in walking alongside me if Alzheimer’s is ever my future.
In the meantime, I’m going to smile, grab my Sharpie marker, and write “GAS” in great big letters on my credit card as a visual reminder for the next fill-up.