friends – Barefoot Lily Lady

5 Years Ago

We’re back from our Hawaiian adventure with Mia. What a grand adventure.

Now I am settling back into the comfort of life’s routine. Sleeping in my own bed with my favorite pillow. Spending Sunday with our church family. Doing laundry in my own washing machine and not having to put $7.00 worth of quarters into the machine for each load!

Today I slept in until my body woke me up….and was almost late for work. It brought me joy being in BeeHive’s kitchen baking up treats for our residents again (many thanks to Karen who filled in for me while I was away).

In the midst of my baking joy, my heart remembered that my journey with BeeHive began 5 years ago today. March 25, 2019 was the day I accepted the help of BeeHive in caring for my mother in her journey Home with Alzheimer’s.

Facebook confirmed that memory with two reminisce posts. Many of my friends and family were praying as I moved Momma out of my home and into her new bedroom at BeeHive. We arrived just in time for lunch. While mom and I ate lunch, Wayne and Beth moved mom’s things into her new room, setting it up much like her bedroom in my home. After lunch, I walked mom into her new space and she settled right in and was soon napping.

I sat in her room watching her sleep for a bit, then met with Gina to go over some move-in details. When we were finished, I was not quite sure what to do with myself. I wrote about that here…

Momma would live here for the last 14 months of her sojourn on earth. Here she would be loved and cared for with the level of care I could not provide. She had friends around her, good food, fun activities, someone to help her every hour of the day or night, and someone to help her to shower (something I couldn’t offer her at my house).

Placing her in assisted living memory care was a hard decision. And the right decision.

Thank you, BeeHive!

A-Z Caregiving Tips (R-S)

Time to revisit my little series of A-Z Caregiving Tips. The photo below is the article which inspired me to make my own A-to-Z list. Let me pick up where I left off and invite you to join me this week for R and S.

Repeat gently, looking toward me if I miss hearing something.

One thing we caregivers do a lot is repeat ourselves. When our loved ones have trouble understanding what we say, it’s important to repeat things. It’s also important to communicate in a way that includes facial expressions, which provide important information for our loved ones. Because my mom was also very hard of hearing, she relied even more heavily on my facial expressions.

The person who has dementia needs you to sit down on their level, look them in the eyes with all gentleness as you speak. I say “gentleness” because it is very easy to have a look of annoyance or irritation when you feel like you’re repeating something for the umpteenth time. Caregivers must be aware that the non-verbal messages we communicate with our body language and facial expressions speak louder than the actual words we speak.

Facial expressions can be difficult for people with hearing problems to understand when we’re moving. Think about how often we call out to someone in another room during the day. Or when we talk to someone in passing as we’re busy with other things. If you’d like more information on this topic, click here for another great resource.

(With all respect to the original author of this list, I didn’t quite see how standing up for the environment relates to caregiving, so let me proffer my own version of the letter S.)

Step back and take a break.

Being a caregiver can be very stressful. I often felt overwhelmed while taking care of my mom. During those moments, I had to take a step back and take a break from all the pressure. For me, that meant leaving my mom with my husband for an hour or two so I could go to the gym. Sometimes he called me back home, but most of the time, I was able to enjoy some time for myself and relax.

It bothers me when I hear caregivers lament that they have no one to help them. I know that it is too often the case; but more often than not, the reality of the situation is that they (we) are afraid to ask for help–or reticent to accept help when it is offered.

I believed I was the best person to take care of my mom, but I also realized that I wasn’t the only one who could do it. It was important for my well-being to take a little break sometimes. I would reach out to our church’s private Facebook page and ask for someone to spend time with my mom for a few hours so I could do something else. Most of the time, someone was willing to help.

There were times when a friend would say something like, “Hey, my daughter and I would like to stop by on Monday to color with your mom. What time would be good for you?”

I learned two important lessons: Ask for help, and never refuse an offer of help.

How Big is this Problem? Part 2

I just came from the post office and feel like I need to share an update related to the bumpy road of paperwork related to redetermining my brother’s Medicaid status. In my last post, I shared that I felt somewhat alone in the task of coming up with answers to the who, what, when, why and where questions on the lengthy MADR form (Medicaid Disability Redetermination Report).

Dementia-friendly Activities

Helping a loved one with dementia feel content is sometimes a difficult task. I’m by no means an expert on the subject, but thought I’d share a few photos depicting several ideas that we tried.

There came a time when caring for my sweet momma in our home was no longer best – for her or for me. God knew what we both needed and provided a wonderful place for her to live a 10-minute drive from our home. Momma lived the last year of her life here on earth as a resident at BeeHive Homes of Oregon – an amazing assisted living memory care community. The amazing staff did so much to help her be as content and happy as possible. Let me share just a few photos of those wonderful activities and opportunities she was privileged to take part in.

Momma loved her snacks! BeeHive always had something she loved.

Though her deafness was sometimes a barrier to fully enjoying the music, Momma and the other residents had many rich opportunities to hear and participate in a variety of musical forms.

This lovely harpist was a regular and well-loved visitor to BeeHive. I do believe I saw “rapture” on the faces of some of the residents as they listened to her play – some of them singing along.

BeeHive is blessed with visits from many musical groups and choirs

Momma obviously enjoyed the accordian – it was certainly easy for her to hear. Just look at the joy on her face!

Several dance troupes brought their lively performances to BeeHive. What a sweet treat!

I’m thankful for the churches who faithfully held services for the residents. This photo is of mom and her friend Roy listening to one of the pastors.

So many creative people and groups shared their time with the residents helping them make a variety of lovely crafts.

Momma gets a little crafting help and encouragement from a sweet volunteer.

*The intergenerational activities were SO meaningful.* The local school sent students over every week to read to the residents. I just love seeing this photo of momma and her armful of babies listening to this young boy read aloud.

Please, let me take just a moment to speak to those of you who are facing the decision of whether or not you should place your loved one in a care facility. Looking back on my caregiving experience, I am so very glad that I spent time with my momma helping her in any way that I could during the last few years of her life. When the time came for her to move out of my home, it was a very difficult decision. My body was telling me it was time. My emotions were telling me it was time. My husband was telling me it was time. Yet, I felt a little like I was giving up. However, I now realize that if I had insisted upon keeping my momma home with me until the very end, she would have missed out on so many wonderful opportunities and friendships.

Momma and Carol didn’t know one another’s names, but they were nonetheless sweet friends. I’m so glad they were able to be there for each other.

May God bless you who are caring for a loved one or friend with memory challenges. May you be blessed with creativity for your very long caregiving days, strength and patience for the long and sleepless nights, and wisdom and grace for each decision you make on your journey of love and care.

Bedtime Prayers

Even on nights when I am weary and tired, I sometimes have trouble falling asleep. Other times, I fall asleep, but cannot stay asleep. My trouble with insomnia probably stems from being on the plus side of 60; but, I think the main problem is that my mind just keeps whirling with thoughts long after my head hits my pillow. In my search for a remedy, I read about a sleep tactic whereby you count backwards from 50, mindfully counting each breath. Breaths are slow and measured – one deep breath in, hold a few seconds, then a slow breath out. I thought it couldn’t hurt, so I tried it. Lo and behold, it seemed to work, as I don’t recall ever getting past the 20’s on my way to zero.

One recent evening, as I completed my requisite bedtime routine of pillow-punching and fluffing, I decided there might be a more meaningful way to spend my countdown to sleep. Rather than pay close attention to the ins and outs of my breathing, I decided to pray about things that were on my heart as I counted forward, rather than backward.

That night, I prayed for the things God brought to mind: a missionary our church supports, my Christian brothers and sisters in Christ who live and serve in India, my children and grandchildren, my brother as he recovers from surgery, my husband’s various ministry endeavors, my pastor, the friends who are looking for work, and several friends with health needs. As I poured the concerns of my heart out to God, I remember taking my sweet mom’s name before the throne as well, asking God to take her gently Home to heaven in His time. Even though I knew I would greatly miss her, I longed for God to rescue her from a body and mind trapped in the clutches of Alzheimer’s.

One by one, my requests were heard by my heavenly Father, resulting in a heart that was quieted by this little bedtime prayer and praise time. Tucked in my bed and nestled under a blanket of God’s peace, eyes closed in prayer were soon closed in sleep. Something tells me my Heavenly Father didn’t mind one bit when His sleepy child fell asleep mid-prayer.

Being Momma’s Friend

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.”

Being the hands and feet of Jesus

As my dear mother’s struggle with Alzheimer’s grows increasingly difficult to manage, it is becoming harder for me to leave the house for any length of time. While my hubby is very capable and always willing to help in many ways, sometimes the help mom now needs is very personal in nature. For this reason (and many more), it’s such a blessing to have a daughter who lives nearby who often helps her grandma when I need to be away. I recently had to take my brother to the doctor and the timing of the appointment didn’t work out for Beth’s schedule. Thankfully, my friend Rita was more than willing to help.

It would be my heart’s desire that caregivers everywhere had someone like Rita in their lives. Someone with the ability to read between the lines. A friend who puts their own life on hold in order to be a blessing. Seriously, if I post something on Facebook or my blog about being tired, I can almost guarantee that shortly thereafter I will hear the “ding” of an incoming text and it will be Rita offering to help look after Mom.

Just last week Momma was having a very hard evening. I had called hospice to let them know that she was having high levels of anxiety and breathing difficulties. Before I knew it, two hospice nurses were at the house helping me with her needs. Toward the end of their visit, I noticed a familiar look on Momma’s face and a slight slump in the way she was sitting. I told the nurses that it looked like Mom was going to faint. And faint she did – she slumped over hard and for a much longer period of time than her usual syncope episodes. Even though I’ve been through this several times now with mom, this one felt a bit different and, I must admit, this time was a little scary.

Unbeknownst to me, in the midst of the ordeal, my hubby Wayne put out a prayer request on our church’s Facebook group and several in our church family began lifting her name up in prayer.

We had a hard time getting Momma to recover from her faint and struggled to get her limp form into bed where we could better help her. I was so very glad to have two nurses there to witness the episode, help me care for her during the episode, and help get her cleaned up and ready for bed afterward.

Momma was now resting comfortably in her bed and the nurses were preparing to leave. I heard my phone ring. Rita called to see if I needed any help; specifically offering to come spend the night so I could get some much needed sleep. I smiled as I listened to her kind offer and quickly responded with my “Yes, please!”

As I said my goodbyes to the nurses and awaited Rita’s arrival, I offered up a prayer of thanksgiving to God for sending TWO hospice nurses tonight and for giving me a friend like Rita – a friend who is truly the hands and feet of Jesus in my life right now.

Christmas 2018 – Seven Differences

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.

The ornament that commemorates our first Christmas in 1976

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.

A back pack – Miss V’s all too grown up gift choice prompts her beautiful smile

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.

Papa helping Charlie crack open his gift – new geodes

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!

Now, wouldn’t THAT be an AWESOME Christmas?

Tuesday’s Caregiving Tip: Accept Help

My hubby has been gone for ten days on a short-term mission trip in Dehra Dun, India. Ten days. I know, in the greater scheme of things, that’s not very long. If all goes well with travel plans, he should be pulling in the driveway in time for lunch today. His absence has made me keenly aware of all the little things he does for me that make it possible for me to care for my mom in our home. I am blessed and grateful.

More than ever, in the time that he has been away, I have also discovered how very blessed I am with friends and family. They’ve helped me clean my house, mow my lawn, and brought me dinner and companionship. These beautiful people have spent a little time with my mom so I could go to the gym, grocery shop, run a few errands, work in my garden, celebrate my birthday with my family, or take an unhurried bath. After a Facebook post about my sleepless nights, a couple of friends carved time out of their busy lives to take care of mom for a few hours, allowing me time to take a nap. One sweet friend even spent the night so I would be assured of at least one night of uninterrupted sleep.

We caregivers are made of some pretty strong stuff. But, sometimes, some of what appears to be “strength” is just a facade – a false wall of competence that gives others the impression that we’ve got it all together and that we don’t need any help. That facade is a form of pride which causes us to struggle to accept help when it is offered.

I have been hesitant to hit the “publish” button on this blog post, because I realize many of my fellow caregivers struggle with finding people to support them and give them a little respite. My heart goes out to you. As I pull my thoughts together into words to write, I am praying that God will bring into your life people who can help.

I think it is safe to say that most caregivers have heard someone say, “How can I help?” Or perhaps it sounded more like, “If there’s ever anything I can do to help, just give me a call.” This little missive is primarily written for you. I must admit, I have heard myself reply on far too many occasions, “No, thanks. I’m okay. But, thanks for offering.”

Here’s my tip – If someone offers to help, never turn them away. Don’t put off saying “yes” for a time when you really need it. You really need it now.

I would love to hear how some of you have been helped as a caregiver, or given help as a friend. Please share your ideas and thoughts in the comments below.

Mary Poppins – Still Making Housecalls

Momma’s eyes light up when Kathryn shows up each Friday evening. As Kathryn hoists her burgeoning backpack off of her shoulders and settles in at the kitchen table next to my mother, I look over my shoulder as my husband and I leave for our weekly Friday evening of respite and sense that I will not be missed at all. These two friends have already started in on their fun.

I’m pretty sure that our mom’s caregiver Kathryn is a real-life Mary Poppins. Much like Mary’s carpet bag filled with surprises, that backpack of Kathryn’s is always stuffed with hand-selected items which will help my mother “find the element of fun” for the next five and one-half hours. Together they eat supper, then work puzzles, color in their coloring books, have fun with hidden picture books, make a craft together, and a host of other things. Kathryn will read a storybook with mom, bring her a book filled with beautiful butterflies and flowers to page through, or even read a Bible passage together.

I’m so very grateful that early on in our caregiving journey with mom we decided it would be money well spent to hire a caregiver to help us out on a regular basis (actually, my very wise husband insisted). Mom is by no means wealthy, but Social Security and a modest pension gave her the resources to pay for a little help, so we chose to have someone come in twice a week for a few hours. When she was still living in her own home in Milwaukee (82 miles away from me), we chose Rent A Daughter to help us fill the caregiving gaps when family couldn’t be there to check in on her. Once we moved her to Fitchburg, we chose Home Instead to be our caregiving ally.

Some might argue that it is too expensive to hire someone. From my way of thinking, a few hundred dollars a month is less expensive than having my own health suffer because I never get a break. Preventative medicine, if you will. And it’s definitely less expensive than the cost of assisted living or a nursing home.

Whenever I have the opportunity to encourage someone who is heavily invested in caring for a loved one, I always encourage them to find a trusted substitute caregiver. Even if finances to pay for outside help aren’t an option, I encourage caregivers to reach out to friends (a retired senior), family (for us, our daughter, eldest granddaughter, or sister), a good neighbor…anyone who can give a little break from the physical, mental and emotional rigors of daily caregiving. It might not be for five hours, but even an hour or two away can make a difference.

Another sweet caregiver named Kathi comes on Sunday mornings, allowing us to have six hours to be able to teach our respective Sunday School classes, attend our worship service (my brother comes too), and enjoy lunch together with my brother. Mom doesn’t usually feel much like being social in the morning hours, but spunky Kathi’s positive can-do spirit also manages to keep my mother content and socially engaged during our time away. When we return, we usually find them seated at the kitchen table watching the birds at the birdfeeders and coloring together. And as an added bonus, Kathi always makes sure my dishes are done! Gotta love that!

The blessing of finding TWO caregivers who bond so well with my mother is most definitely Supercalifragilisticexpialidocious!