It makes me a bit sad when I re-read this post and am reminded I wasn’t able to care for mom in our home until the very end of her journey on earth. But, only a tiny bit sad. I know in my heart that moving her to BeeHive Assisted Living and Memory Care in her last year on earth was the right thing to do. BeeHive was so much more than a “place for those waiting to die”. The decision to move her into memory care provided her with so much more meaningful interaction, activities, opportunities to move about, more variety in her meals, and lots of tender loving care. I am beyond grateful for the time spent with her — I know that is something I will never regret. I’m thankful for a husband whose wise investments meant that she would not “run out of money” as she had often worried. It was enough. God is good…all the time.
When you have Alzheimer’s you can’t remember that you don’t need to worry about something. So you do worry. A lot.
Mom worries about such things as whether there is food in the fridge and if she’ll be able to afford the things she needs to live. There is, and she will.
When we have guests, she worries about how they’ll get home in the dark, or where they’ll sleep for the night. She will oftentimes tell our guests that they can sleep in her bed if they need a place to sleep. Sad, but sweet.
Her worries are usually small ones. She worries every night about whether or not she has a toothbrush. She frets about leaves and twigs out in the yard, or the water on the deck after a rain.
Other times, her worries are big. Her biggest worries are about the future. Just today, she came…
Tuesday’s Caregiving Tip: Keep a journal of those special moments with your loved one.
To my fellow caregiving friends who are still in the hustle and bustle of caring for a loved one with dementia, be sure to take time to write down those special moments. I wish I had kept an actual chronological handwritten journal, but am so glad I blogged and took photos…and posted cute stuff on Facebook.
I moved in with mom for a period of about 9 months. It seemed long and tedious in the midst of it, but just a tiny blip on the radar of life in retrospect. I’m glad I posted this fun memory on Facebook and hope it will bring a smile to someone’s face today.
This is the third in a series of posts inspired by an article from Alzheimer’s TODAY called Tiny Gifts That Are TREMENDOUS, where Mary Kay Baum shared a helpful A-to-Z list of caregiving suggestions Thus far, I have given you my spin on A-B-C and my thoughts as a caregiver regarding D-E. Let me invite you to join me this week for F and G as I share how these excellent tips have played out in my own caregiving journey.
Thus far, I have given you my spin on A-B-C and my thoughts as a caregiver regarding D-E. Let me invite you to join me this week for F and G as I share how these excellent tips have played out in my own caregiving journey. [Click here to read the original article].
Fear not if I take a break from commotion.
We were celebrating a birthday at our house. Mom sat at her place at the table and enjoyed watching the festivity and seeing a few of her great-grandchildren. Though she didn’t contribute much to the conversation, my heart was warmed by her smile as she watched the birthday boy bask in the attention. After the candles were blown out and the cake was served, mom quietly stood up with the help of her walker and then scootched down the hall the short distance to her room. She was done with company. And that was okay.
On a previous occasion, when mom was living in a senior apartment, the residents were hosting Trick-or-Treat for the neighborhood kiddos. During our city’s Trick-or-Treat hours the residents gathered in their activity room and waited for the steady stream of costumed guests. I thought mom would enjoy seeing all of the kids and handing out candy with all of the other seniors in her building. She stayed for a few minutes, then went back to her apartment; it was just too much for her. I had invited a few kids from church to come to the event. When they arrived, I invited them to visit mom in her apartment. Mom enjoyed the smaller gathering so much more.
During this phase of her journey with Alzheimer’s it became my mission to keep her engaged by inviting people to see her. One or two people would join us for lunch; another day someone might come over to say hi and work a puzzle or engage with her by sitting with her at the table coloring. One family from church brought us pizza for supper one evening, then stayed for a bit so the girls could sort through a jar of buttons with mom.
Go with me and others on quiet nature walks.
Truth is, in the later stages of dementia, most days it was nearly impossible to get my mother outside of the house for a little fresh air. It was a treat when it happened.
If the weather was nice and I could coax mom outside, I’d get her seated in a wheelchair and push her to our neighborhood park.
She enjoyed watching the children play at the splash park, seeing dogs being walked along the pathways, and would occasionally engage a perfect stranger in conversation.
We didn’t stay long, as the charm of our outdoor excursion would soon be replaced by the fear of being able to find our way home. By the time I got her back in the house, she had already forgotten our little trip. Even though it was forgotten, the benefits of the fresh air and the infusion of joy would linger in her demeanor.
One day, out of the blue, mom wanted to “check the mail,” so I let her go outdoors with her walker. She enjoyed that little trek down to the curb and back.
Since she was in a good mood, dressed decently, and it was nearly dinner time, we decided to put her in the car and go for a drive to the nearest Culver’s for supper.
She thoroughly enjoyed every bit of it…especially the frozen custard.
Once my mom made the move to assisted living memory care, getting her out of the front door was even more rare. This photo shows one of those sweet occasions when her great-granddaughter Violet managed to get her outside to sit on a shaded patio.
As Alzheimer’s continued its relentless march claiming bits and pieces of my mom’s brain, it was evident that mom’s world was shrinking right along with her memory. All too soon there came a day when the world outside of Mom’s front door became too scary of a place for her to venture.
That was the day when “go with me” became “be with me.”
I work a few days each week as a baker of all things sweet at a beautiful assisted living and memory care home – the very same place where my dear mom spent her last year on earth. The people who reside here are placed for various needs, most of them needing more help than family can provide with matters related to living life with short-term memory loss. In my short time there as an employee I am getting to know and love each resident, but I do have a few favorites. One of those favorites is as sweet as she is feisty. One minute she can be doling out compliments and kisses, the next she’s telling me to stick my mixer where the sun don’t shine.
But I love her to pieces.
I think she holds a special place in my heart because she reminds me in small ways of my mom (pictured here), who also had some bad days as she wrestled with Alzheimer’s in her later years of life.
In the years before Alzheimer’s, my mom was never one to use foul language; the worst I ever heard come from her mouth when I was a kid was an under her breath, “Shhh-ugar!” Yet, in the throes of the later stages of Alzheimer’s, my mom would occasionally make me blush with her language. If she were in her right mind, she’d be truly embarrassed.
Not long ago my new friend had a really bad day — I knew from the minute I walked in the door that morning that it was going to be a doozy when she began swearing at me for just saying, “Good morning.”
When any of our residents are having a bad day, I can’t really help much, as I’m “just the baker” and not directly involved in resident care. However, there is always one thing I can do. As my hands keep busy at the work of baking desserts, I can pray for those caring for the special needs of the residents. On that morning, I prayed for everyone involved in doing what was best for her, each one doing so with compassion and grace. All the while, I fought back tears for this dear woman who was living out one of my biggest fears for my future. You see, I struggle with the fear that Alzheimer’s may one day strip the filters from my tongue and that I might use uncharacteristically foul and abusive language.
So, how should caregivers deal with the foul language issue in their loved one with dementia? To answer that question, let me share a link to a super-helpful article from Very Well Health which discusses this problem and lists many suggestions. You’ll also find some internal links to explore on related issues: Relationship Between Foul Language and Dementia
My personal go-to tactic is the one in this article called “Redirect and Distract”. Where my mom was concerned, I would say something like, “Are you hungry? Would you like me to fix you a sandwich?” My mom loved sandwiches, so I kept a little stash of halved sandwiches in the fridge.
Other times I would distract her with an activity. I’d just walk away from her angry outburst and grab her coloring books and colored pencils and begin coloring. Nine times out of ten, she’d join me in a few minutes.
Another thing I did on many occasions was to grab my collection of buttons and pour them out onto a towel on the kitchen table. I’d just quietly start sorting the buttons into color groupings, or line them up in rows. Mom could not resist this little sorting activity. Before long, she’d be calm and would join me.
I wrote about these two and several other activities in my post Dementia Friendly Activities. The key thing was for me to be quiet and resist the urge to argue or add defensive words. Talking during one of her outbursts would only add fuel to the war of words raging uncontrollably in her head.
My friend at work has a similar calm-down button: her sweet tooth. I can sometimes redirect her downward spiral by offering her a cookie.
Since I’m the baker, I’ll sometimes say, “I need your help. Could you taste test this for me?” My friend also likes a slice of buttered bread with a cup of milk. Paying attention to what she enjoys and asks for in her calmer moments equips me with ideas for dealing with the tense moments.
While I dread the thought of ever having Alzheimer’s, I do trust the Lord with my future knowing that He will provide what I need should this be in His plan for me. It is my prayer that the Lord will keep my tongue sweet and gracious, and that the “law of kindness” will always be on my tongue. (Proverbs 31:26)
My friend and I talked recently about palliative care and how it differed from hospice care. I recalled writing a little blog post about this subject, so decided to reblog it today. I hope that it helps my friend and anyone else who is approaching this stage in the care of their loved one. I praise God for leading me to Agrace and for the wonderful palliative and (later) hospice care my dear mom received.
As this mid-stage of Alzheimer’s drags on, Mom is sleeping quite a bit more, not only at night (which I appreciate), but during the day as well – sometimes skippinga meal in lieu of sleep. Unfortunately, her nighttime sleep doesn’t appear to be very restful, as she gets in and out of bed various times throughout the night – sometimes to use the restroom, other times to explore the contents of her purse or her dresser drawer, or watch the real or imaginary happenings going on inside our house or outside of her window.
We have also noticed she has been less content during her awake hours and is more easily agitated. She paces back and forth between her bed and her chair at the kitchen table, never quite settled in either place; never quite sure if she’s going to bed or getting up.
Once upon a time, not so very long ago, I arrived at BeeHive to sit with mom during lunch. Momma was able to stay focused on eating if someone was nearby to remind and coach her. As her Alzheimer’s progressed, she had begun missing meals – sometimes only eating one meal a day – so I tried to be there during that time whenever possible. On this particular day, I was running a bit late and most of the residents were eating their dessert.
Not Momma. She had already toodled away from the table in her wheelchair and was calling out, “Billy! Billy! Where are you, Billy?” Now, I didn’t know anyone there by the name of Billy (not even one of her dolls had that name), and had never heard her call out for someone in this unconsolable way. Mom seemed almost frantic to find Billy.
I put my things down near her place at the table, then approached her and asked if I could help. “No! I want Billy!” insisted Momma. “Well, let me help you find him,” I replied. “Can you tell me what he is like?”
Momma seemed glad to have someone help her find Billy. The staff was nearby beginning the cleanup process after lunch, so I asked if any of them knew who Billy was. No one did.
Then, with tears in her eyes, Momma brought me back to the situation at hand and plead, “Please, help me find Billy. He’s my friend and he’s so kind. He helps me.”
That description was all I needed to give me a strong hunch as to the mystery of Billy’s identity. Going with my hunch, I asked one of the gals if Momma had been hanging out with Andy that morning. Why, yes! Andy had paid quite a lot of attention to Momma earlier that morning, strolling with her around the building and helping her with daily cares.
Andy is one of the owners of BeeHive of Oregon. Like the other co-owners, Josh and Gina, Andy has more than just money in the business. He puts his caregiving heart in there too.
Andy showed his interest by taking the time to notice the photos I had placed in mom’s room. As he looked them over, he would ask questions about them so he could learn more about my mother’s past – important because Momma was living in the distant past in her mind. Knowing more about a someone’s past is helpful in caring for those with any number of conditions which cause short-term memory loss.
Andy often told me how much he adored my mom. He wanted to know about her and took a genuine interest in hearing stories from her past so he could better understand what made her tick. Though Momma probably didn’t say so, she trusted him and I think she sensed how much Andy loved her.
I have all sorts of excuses for why I’ve been a little hit-or-miss in the blogging department. The best reason I can proffer is that I’ve been taking little breaks for a bit of creativity of a different sort.
First up, a very special sewing project. My son sent me a text one night asking if I would make a Christmas stocking for a teen who is staying with them. I had made a stocking for each of my grandchildren prior to their first Christmas and he was hoping Danni could have a similar stocking too. I was so very glad he asked because I had it in my heart to do something for her, but wasn’t sure what she would enjoy. This would be fun!
(Note: Healthcare marketers and communicators have always fallen short when it comes to developing a deep understanding of the patient and caregiver’s mindset. The recognition of that failing is what motivated this post.) On June 11, 2012, my father sent this letter to all five of his children. My mom had been suffering from dementia […]
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.
It’s hard to believe in less than a week hubby and I will be gathered with our kids and their families celebrating Thanksgiving. I’m personally looking forward to time away from caregiving (thankful for my sister who will care for mom while we take a little break), time with my grandkids, a little uninterrupted sleep, good food cooked by my kids and a few of their kids with a little help from me (When did THAT happen? Used to be the other way around!), and everything else that goes with spending time with family reflecting on God’s goodness to all of us.
I have so many things on my always growing “to-do list”. In my world of being a full-time caregiver for a mother with Alzheimer’s, there are days when I may as well throw my to-do list in the trash, as Momma’s needs trump my would-like-to-get-done checklist.
One thing has helped. Simply focusing on one thing at a time.
“One bucket of weeds” is doable. I can certainly grab a 5-gallon pail during one of mom’s catnaps and do a quick cleanup of one area of my garden. That one bucket often leads to two…or maybe even more.
“One load of laundry” is much more attainable than devoting an entire day to the job. It’s an on-going job that is never truly accomplished anyway…so just do ONE load now. The rest will follow.
Sometimes it does help to break my big job up into lots of little “ones”. Spending time in the garden is one of those things I love to do, but also one of the things that is HARD to do while taking care of my sweet Mom. But, truth be told, even on the worst of days, I can get ONE thing done if I create a few bite-size chunks.
Trim back the red peony and bag the leaves
Dig out the aggressive lamium
Divide the red iris
Plant a piece of the red iris on the other end of the flower bed
Trim back the clematis to 1 foot
Plant the tulip bulbs
Repaint the birdhouse (a rainy day project)
Very few of those jobs take longer than 10 minutes to accomplish. A little here and a little there. One small bite at a time. Each little job accomplished leads to the satisfaction of being able to cross the big job off the list.
There you have it. My ONE contribution.
Now, I’m going to fold ONE load of laundry before a much needed night out with my ONE guy.