Assisted Living: What to Expect

When one wrestles with the thought of placing a loved one with memory loss into assisted living, many questions come to mind while making that life altering decision. Thankfully, there are many good books related to caring for a loved one with memory loss…and I’ve probably read most of them. If I could only recommend one, it would be Jolene Brackey’s, Creating Moments of Joy. [I wrote a little book review about this book here.]

I love this page. I live this page.

It’s important to have realistic expectations concerning assisted living memory care.

It has been almost four months since we moved Momma into assisted living at BeeHive Homes of Oregon, WI. She has made a great transition – not without its hiccups, but BeeHive is definitely a gift from God for my sweet mother. In these four months I have fallen in love with each resident who lives there with her and each one responsible for her care.

There are 16 rooms at BeeHive–at any given moment you might find my dear mother in any one of them–although she has her favorites. She loves to nap in Carol’s room, enjoys the sunny window in Caroline’s room, and can often be found rearranging pillows and tending to every one else’s babies in her neighbor Kathi’s room.

On any given day, my mom might be wearing her favorite outfit…or might be looking cute as can be in another lady’s pajamas. The other day I noticed mom wearing her nearby neighbor Roy’s watch; she also had his remote control and he had hers. I’m really not sure who has her colored pencil set, it’s been on the lam for a few weeks, but know they’ll turn up some day…she probably put them in someone else’s drawer for safekeeping on one of her daily adventures tooling around in her wheelchair.

Momma is a gatherer. If something is missing from someone else’s room, it can reasonably be assumed Charlotte probably has it for safe-keeping in her purse, or wrapped in a blanket and tucked away in a drawer in her room. Toilet paper is irresistible. An unattended doll or stuffed animal won’t be lonely for long if she can help it. She even managed to pick up an unattended cell phone that belonged to one of the hospice staff. I half-jokingly remind the staff that if something is missing, just check Charlotte’s purse and drawers…it’s probably there.

Only one of these dolls belongs to Momma – but they are all equally cared for and loved. [Photo credit: Kathleen Zelinski]

Slowly, but surely, I’m learning whose stuff belongs to whom (most of it is labeled). I spend the first few minutes of my daily visit returning things she has borrowed and retrieving things she has tucked into places where they don’t belong and returning it to the right place.

One thing is for sure…Momma belongs and is in the right place.

Five Minute Friday: Enlarging my World

My world has been relatively small the past few years, staying pretty close to home. Life has revolved very much around taking care of my mother as she battles Alzheimer’s. Over the years, I found myself growing weary and having to stop doing several things I love in order to be able to focus on her ever-increasing needs.

In late March, my sweet momma took up residence in a beautiful assisted living facility devoted to those with memory care needs. I still spend a few hours each day with her, but I can sleep throughout the WHOLE night in my own bed and am no longer fully responsible for her daily care. I’m beginning to feel more rested and able to resume some (but not all) of my former activities and ministries. I can take a little road-trip with my hubby, play in the dirt in my garden, or prepare a Sunday School lesson for the kids at church without interruption. It’s truly a blessing from God’s gracious hand.

With this new freedom, my world will enlarge even more in September when I accompany three of the men from our church (including my hubby) on a teaching trip to India. My responsibility during this trip will be to teach English as a Second Language (ESL) to the students who will be gathering for the purpose of enjoying some seminary-level training. I have never taught ESL, so this will be a huge stretch for me – something which will also enlarge my world as I help this group of adults whose first language is Hindi in their continued quest to become more fluent in their conversational English.

This is my hubby Wayne’s second trip to India (he’s the handsome, white-bearded guy on the lower left of the group photo above), as he traveled with our pastor and another friend on a teaching trip last year. This fall’s trip is a giant leap for me, as I’ve never been out of the country. [Well, unless you count the time when my hubby and I were honeymooning 43 years ago in a rented recreational vehicle and we drove over the Canadian border in the days before a passport was required.] This trip to India will be my first trip overseas, passport, visa, shots, long international flight, and all the cultural adventure that will surely come with that experience.

In the meanwhile, I will need much prayer support as I prepare for my role as a teacher on the other side of the world.

This post is written for the Five Minute Friday Writing Community. Please come join us! https://fiveminutefriday.com/

“I Wish I Could Help”

One recent thread on a Facebook group for dementia caregivers discussed the topic of how to respond to people who say “I wish I could help.” Most have good intentions, but no concrete offers of help. Others are just making polite conversation and really have no intention of helping. One tongue in cheek caregiver response was, “I’m going to start a list to hand them.”

We all laughed.

One longtime caregiver’s contribution to the post was, “I think we should all make our own list to have ready whenever we hear that offer.” Before long, we had created a rather long list. Some of our responses were a bit of a tease, like the caregiver who said, “If you want to bring me a gift, bring Kleenex! My loved one goes through two boxes a day!” We all laughed because an obsession with Kleenex and toilet paper seems to be prevalent in the world of memory loss.

Let me share a few more of the ideas culled from our group effort:

  • Instead of “let me know if you need anything,” please just show up on my front porch with a good cup of coffee.
  • Another caregiver added her twist on the impromptu coffee date idea: “Yes, show up on my front porch with a cup of your favorite coffee. Then sit down with my loved one and tell me to get lost for awhile while you drink your cup of coffee.”
  • Talk to me. Listen to me. I don’t really have someone I can carry on a conversation with anymore.
  • If you see a need that you can meet, just do it. It will make my day.
  • One woman’s husband asks her each morning, “What can I do for you TODAY that will make your life easier?”
  • Send me a card once in awhile (I have a special friend who does this every single week).
  • Share with me one of your special memories of my loved one. In doing so, you will help me focus on the good and remind me that their life mattered.
  • Tell me that what I’m doing matters.

One item on the list was my favorite: Ask God to show you how you can help. I promise, He will.

“Pssst! Can you help me get out of this place?”

I have SO MUCH to tell you and can’t believe how much time has elapsed since I updated everyone concerning my journey in caring for my mom. I started writing this post the last week of March. Let me do a little back-tracking and a bit of catch-up writing here.

I already told you the story of her dolly here, but SO much has transpired in the past three weeks surrounding that story.


March 18, 2019

Lord willing, one week from today my dear, sweet Momma will be moving out of our home and into her new place at BeeHive Home in Oregon, WI.

If I think about it too long, it brings tears to my eyes. While I had hoped to care for mom here in my home until God chose to call her to her eternal home in heaven, I know in my heart that it is time to place her in a memory care environment where her needs will be better met.  

The first year we cared for Momma in our home, she would often tell people that our home was HER home and that we were living here with her. She’d point out which side of the house was hers and which side was ours. She’d express concern to anyone who’d listen, saying, “They sure do have a lot of stuff.” To her way of thinking, the gardens that I’ve toiled in for the past 20 years were planted by her many years ago. It blessed us to know that she felt “at home” here and was taking ownership, so we just joined her in her version of the story.

As we approach the two year anniversary of her living in our home, Momma looks lost and confused whenever she walks into the bedroom that has been hers all this time. Confusion clouds her fading brown eyes as she sits in her chair at the kitchen table surveying the gardens and wonders where she is and “how the heck” she got here. Her most often asked question is, “When do I get to go home?” Many times we find her sitting near her bedroom window, expectantly watching for her parents to come and pick her up in their car.

Nights are long and many of them are being spent without sleep – for her, or for me.  During those late nights of making and remaking her bed because she has repeatedly removed and folded up her bedding (in preparation for the move she thinks she is making), I find it disturbing to find my compassion is beginning to be replaced by exasperation. I can hear it in my voice and actually feel my blood pressure rising. Sleeping in our comfy bed next to my husband has been replaced by dozing in the chair next to her bed. Even if that were comfortable (and it’s NOT), it’s not particularly restful sleep and definitely not the coveted “restorative sleep” when it’s interrupted a dozen times or more with toileting needs, painful cries, bad dreams, and her shaking me awake to ask me if I’m okay. “You look so sick. I thought I better check on you.”

One year ago, Momma still knew I was her daughter. She knew my name and she knew Wayne’s as well. Now, she can sometimes come up with my name, but usually thinks I’m her mom or sister. Sadly, Momma no longer remembers Wayne’s name. She calls him “that guy” most of the time and thinks he is just a guy on the staff here.

Today Momma beckoned me into her room with a look of desperation and a ‘come-here’ wave of her hand. As I drew near she said in a whispered hiss, “Pssst! Can you get me out of this place?!”

Little does she know that she IS moving into a new home next week. I’m still not sure how (or if) I will tell her. I do know this. I’ve said it before and will say it again. God will give us the wisdom we need when we need it.

Our Family’s Decision

The past few days have been especially wonderful. Even though it sometimes felt like I was always cooking, having our kids and grandchildren gathered here and being surrounded by family refreshed my spirit.

Three nights in a row of good sleep didn’t hurt either.

Yesterday, our children, along with our three lovely granddaughters, lovingly came alongside us in support of a decision that Wayne and I had already prayerfully made. A spot in a lovely memory care home has opened up for my mother. Together as a family, we acknowledged that my mom deserves to receive the 24/7 care I can no longer give her.

This has been an especially hard decision for me, as it has always been my desire to walk Momma all the way “Home” here in our home. Now that mom is under home hospice care, it seemed like we were almost there. But God has given our family wisdom and showered me with peace in the midst of my tears.

Last night, Mom was out of bed before our Friday date night caregiver left our home at 10:30 p.m. Bless sweet Kathryn’s heart, she tried so hard to get mom to bed and asleep before her shift was over. It was not meant to be. Sleep would not come for Momma until a few minutes before 5:00 a.m.

Today I’m feeling physically worn out and emotionally spent. The frustrations of my sleepless night and my groggy, bone-weary body served as confirmation that the decision we made as a family is the right one.

Nine days from now it will be different.

Round-the-clock care will be available to redirect my tired and anxious mother back to the safety of her bed while I am sound asleep in my bed a few miles away. There will be no more trips up and down the stairs between my bedroom and hers all night long. No need for cameras and a video monitor to keep tabs on Momma. No need for baby gates, a multiplicity of grab bars, wheelchairs, walkers and bedside potty chair. Someone else will vigilantly monitor and carefully dispense drugs, change and launder soiled clothing and bedding, cajole her into bathing (and washing her hair), and keep her from wandering away.

I find comfort in the hope of being able to attend school concerts, participate in church activities, go to the gym more regularly, travel with my hubby, take an unhurried bath, have impromptu play dates and sleepovers with my grandkids, and play in garden dirt whenever I want. The list of all the things I’d like to do now is very long indeed.

As much as I look forward to finding our new normal, I also understand the transition will not be easy–for her or for me. The tears which trickle down my cheeks without warning remind me that I will miss taking care of mom. It has truly been an honor and a privilege and the hardest thing I have ever done.

Caregiving truly is the hardest job I ever loved.

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.

Rita – the hands and feet of Jesus

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.

Tuesday’s Caregiving Tip: Remove the Obstacles

For some of my readers, this post may be TMI. When writing about my mother, I try to be judicious in the stories I tell and respectful in the details I share. I hope this isn’t crossing that line. What I am about to tell you needs to be written because it is a daily reality faced by those afflicted with Alzheimer’s and those who care for them.

Read on if you’re game. Continue reading “Tuesday’s Caregiving Tip: Remove the Obstacles”