Measuring Time

This is my mother’s watch.

Momma undoubtedly bought several watches during her lengthy nursing career. But, as she often recounted the story of her watch, she had been wearing this very watch since she graduated from nursing school in 1955. You see, a watch with a sweep second hand was essential in my mother’s era of nursing. It kept you and your doctor on schedule and kept you accountable for the time you spent on breaks. When updating a patient’s medical chart (no computers back then), it provided the time for documentation purposes. Its sweep second hand was the essential tool momma used day in and day out to measure a patient’s heart rate in 15-second increments of time.

Holding my mom’s watch in my hands today, I recalled how meaningful it was to her, even after my mom could no longer tell time (which I wrote about here). A mind clouded by Alzheimer’s loses the ability to measure the passage of time or interpret the face of a watch somewhere in the middle stages of the disease’s progressive march through the brain.

Even after my mother could no longer tell time, I invested a good bit of time in finding my mom’s treasured watch when the paranoia of dementia would cause her to occasionally hide it for safekeeping. I had the band resized when she slimmed down and it spun on her wrist. I even took it in for repairs once and replaced the battery on several occasions. The natural motions of her body would wind the self-winding watch (another clue that it was NOT from 1955), but Momma would wind it anyway because that was what she remembered doing in days gone by. Over time, this damaged the watch beyond repair, but she still loved to wear it.

When my mom moved into assisted living memory care and I saw how she would distribute her things all over the building (and borrow the belongings of others without consent), I decided to take her watch home with me for safekeeping. I hated to take something that was hers, but the story of the watch had also become something I treasured. Thankfully, it didn’t seem to matter much to mom — especially since her friend and BeeHive neighbor Roy didn’t seem to mind if mom (ahem!) borrowed his watch from time to time.

One day I noticed my mom sidle up her wheelchair to another lady friend at BeeHive. She seemed concerned that her friend was slumped in her wheelchair. Here’s the precious thing I was honored to witness with my own eyes. Momma reached over and gently placed two fingers on her sleepy friend’s wrist, instinctively finding that arterial sweet spot nestled between the thumb and tendon. The nurse in my sweet mother looked at her watchless wrist as she felt her friend’s pulse for about 15 seconds, then smiled with satisfaction and patted her sleeping friend’s hand as she said, “You’re going to be okay.”

5 Thoughtful Gift Ideas for Someone with Alzheimer’s

Photo by Pixabay on Pexels.com

Last month we celebrated my grandson George’s birthday. I cannot believe my youngest grandchild is eight years old already. Like many 8-year-old boys, he’s into all things Legos and Minecraft. This year he asked me to make his cake and surprised me when he went a little retro in his decorating request. Pac-Man!

When it comes to birthdays, I am so very thankful that my daughter helps her kids create Amazon gift lists. They make shopping for my loved ones so much easier. A “click” or two and the shopping is done and I can be reasonably sure that I am purchasing something my grandchild really wants and will appreciate.

But shopping for a loved one with Alzheimer’s (or any type of short-term memory loss) can be a little tricky. What they once enjoyed may now hold no meaning at all, or may actually cause agitation. My mom had Alzheimer’s. It took a little bit of experimentation to find out what she liked, but I learned things along the way and hope my experience will be helpful to someone else. Here are a few of the gift ideas my mom enjoyed:

Something cuddly soft and warm (and very washable) – like a new blanket, a pretty sweater, or a beautiful shawl. In my experience with my momma, being cold was always a problem. I could be fanning my sweaty self and my sweet momma would be in the same room looking for something to wrap herself in because she was cold. We bought her several plush bed jackets and soft sweaters with pockets. Momma was not alone, as being perpetually cold was a problem with many of her friends in her assisted living memory care. I would suggest something in a favorite color, but nothing with a busy pattern; I learned the hard way that patterns can turn into terrifying objects when a loved one is in a stage where hallucinations and delusions are common (you can read about one such experience here).

This one is handmade and belonged to her assisted living community, but mom loved it.

The quilt hanging on the railing in the photo below was a gift for my brother sent by his friend Cheri and the church quilting group to which she belonged. It was such a nice gift and sweet gesture of love and care. He may not remember who gave it to him, but he will appreciate its warmth in the coming winter months.

My brother, enjoying a cup of coffee and a little fresh air on his nursing facility’s front porch.

Coffee (or another favorite beverage). Mom’s eyes lit up when I brought her sweet tea or a Diet Coke. My brother always enjoys a good cup of coffee (with lots of half & half) whenever I visit him.

This size photo book was perfect for my mom to tuck in her purse to enjoy discovering later.

A photo book. Photo books are a perfect icebreaker when visiting a loved one who no longer remembers your name or connection. Just paging through a photo book takes away some of the awkwardness of memory loss, giving you something to enjoy together. In the photo above, my granddaughter Violet is spending time with her great-grandma going through a photo book that features Violet’s family. In addition to your corner drugstore, there are any number of on-line sites where photo books can be created.

A favorite treat – as Alzheimer’s progressed, mom developed quite a sweet tooth and loved it when I brought a cookie or a donut. Please don’t be too worried about nutrition; it’s all about your loved ones favorite things and bringing them joy at this stage in life. I would occasionally put a cookie in a ziplock bag, then tuck it in her purse for her to discover later. Your loved one may not realize it is from you, but trust me when I say your surprise will bring a bright spot to their day.

A birdhouse. Many residents have birdfeeders, which are quite enjoyable; however, they require someone willing to keep them clean and filled with seed, which isn’t always practical. Birdhouses are quite lovely to look at and don’t require a lot of upkeep. Seeing bird families coming and going is sure to bring a smile.

What are your gift suggestions? Please share them in the comments.

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.

Group Activities to Encourage Movement

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.

Butterfly Kisses

The final week I spent with Momma is now a blur; the days and nights run together in my head. What I do clearly remember is an overwhelming feeling of gratefulness. Each day and night that I spent with her illuminated the many reasons I had to be so grateful; many of those “reasons” wore scrubs and a nametag. It did not matter if they were a nurse, a personal care or nursing assistant, or owner of BeeHive, it was obvious that each had a role in providing care, and they all loved my Momma.

Keeping vigil at my mom’s bedside during that final week, I had the privilege of watching each one of mom’s amazing caregivers at BeeHive, together with her hospice team, do their best to make this last part of my sweet mom’s earthly journey as comfortable and pain-free as possible. Every few hours they would check to see if she needed to be changed and reposition her to prevent bed sores and to ease her struggle with terminal respiratory secretions. Medications were administered to keep pain under control and help dry up some of those bothersome respiratory secretions. If there was any sign of pain or discomfort, they were on it, adjusting her medications or finding that “sweet spot” in positioning her. Since Momma couldn’t swallow to drink anymore, they used swabs to soothe her parched lips and keep her mouth hydrated and clean.

Even though BeeHive is a busy place, as the caregivers worked with her, they never seemed to be in a rush. Gentleness was in their touch whenever they moved her. Each person involved in mom’s care spoke to her just as if she could hear and respond. As each one left the room after performing daily cares, they left behind a kind word of care and endearment.

It could have been my imagination, but as her body weakened and she slipped into a non-responsive state, I sometimes felt as though she was peeking through almost closed eyes, searching to see if I was there. Otherwise, in all of this, momma gave no real indication that she was aware of anyone being in the room with her. I honestly didn’t know if she could hear me, but I talked to her anyway. Even though Momma was quite hard of hearing, I oftentimes placed my phone on her pillow next to her ear and played her favorite hymns while I sang along with tears playing in the corners of my eyes. When I sensed that she was agitated, I stroked her forehead to soothe and quiet her, tracing her forehead and nose with soft touches, much as she did for me when I was a child. When I could do nothing else, I just held her hand.

On Saturday night, I noticed Momma making kissing sounds. Her eyes were closed, but her head was raised off her pillow and she was definitely kissing the air. Her kisses were insistent, so I thought perhaps she wanted to give her Dolly a kiss. Momma loved that Dolly, taking care of her (and a host of other dolls) as if they were her children. I put Dolly’s cheek to Momma’s lips and Momma gave her little butterfly kisses. I thought that was so sweet, so tucked Dolly back in with Momma.

But Momma kept making kisses. So I put my cheek to Momma’s lips to receive her kisses. Momma kissed my cheek a few times and I kissed hers. Momma stopped kissing and relaxed her head on the pillow.

It was then that I knew those butterfly kisses were for me. My sweet Momma knew I was there and she was trying to give me a goodbye kiss. Perhaps Momma knew that heaven was drawing near and that she would be with Jesus in the morning.

In Search of Billy

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.

Photo credit: Kathleen Zelinski, BeeHive of Oregon’s Activity Director

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.

And Momma loved her ‘Billy’ too.

The Decline: Praying for Moments of Clarity

“Touch can reach through the fog, confusion, and fear of dementia. Reassuring touch grounds those who are spatially disoriented, bring people back to their bodies, and increases their awareness in present time and space. One touch can affirm that they are not alone and they are valued by the person who is beside them.”

Teresa Stecker, R.N., Hospice Nurse, excerpt from Creating Moments of Joy Along the Alzheimer’s Journey, by JoLene Brackey

Following mom’s recent and very life-altering stroke, I wanted to make sure my sister Viv would be able to share some special time with our mom. Between the restrictions related to COVID-19, my sister’s work schedule, and her car that needed tires and brakes, Viv hadn’t been able to see mom, and I felt time was running out. I phoned Viv and told her that I thought mom would be going Home to heaven soon and encouraged her to visit if she could.

In an effort to prevent the spread of COVID-19, visiting a loved one in a care facility was limited to window visits. But there was an allowance for residents who were in end of life or needed “comfort care.” Mom had been under hospice care for quite some time, but had now officially transitioned to end of life care, so family was permitted to gather as long as certain precautions were taken.

Viv didn’t have reliable transportation, but said she could come on Wednesday when her daughter would be able to bring her. In my heart, I was worried that mom wouldn’t make it until Wednesday, but didn’t want to burden Viv with trying to pressure someone else to bring her or tempt her to drive a car that was not roadworthy. By Tuesday, Mom was sleeping a lot and had completely stopped eating and drinking, so I prayed that Viv would be able to make it in time and that she would find a measure of peace for having been here.

I noticed that mom was a tiny bit more alert in the minutes immediately following being changed and turned, so requested that her caregivers do her daily cares shortly before Viv was scheduled to arrive at 1 pm. They say that when a person is in the end stage of life there is often a rally, or a short time of clarity. I hoped and prayed Viv would get one of those moments.

Mom was weak and groggy when Viv and her daughter Jessie arrived, but she had her eyes open and was more talkative than she had been since her stroke on Sunday. Viv lotioned mom’s hands while she visited, which was something that seemed to be very soothing for mom. Mom started talking and tried to tell her, among other things, that her arms and mouth didn’t work anymore.

It was the moment of clarity I had been praying for. My heart rejoiced seeing God’s answer to prayer as they had that little moment together.

May 20, 2020 – A weak, but sweet smile from Momma, pictured here with her youngest daughter Vivian and youngest granddaughter Jessica.

If we were having coffee…

Today I am imagining that we are enjoying a cup of coffee (or your favorite beverage) together. In my imaginary coffee klatch, you are asking me a few really good questions. Let me share with you how I would probably answer those questions.

“What things did you like best about having your momma in assisted living memory care?”

  • I was blessed to be able to sleep at night (all night).
  • Momma had more than one pair of eyes keeping an eye on her when she struggled with sundowning and couldn’t seem to stay in bed all night.
  • Momma was safer. Yes, she would fall, but she would fall at home too. At BeeHive she had more than one person available to help her get up again and a whole team of people assessing whether or not she was hurt.
  • I slept in a peaceful and quiet house. There was no longer the need to listen to a video monitor’s static hissing at my bedside as I drifted off into never-long-enough sleep.
  • There were no more bleary-eyed trips to her room in the middle of the night to help with toileting, clean up accidents, change clothing or bedding, or try to reassure her that she was safe from the imaginary people she would see lurking in the shadows at night.
Just a few of mom’s incredible caregivers

“What did you miss the most about being a caregiver once your mom was at BeeHive?”

  • I would tell you that even though I no longer had the responsibility of caring for her 24/7, I was still her caregiver. While some caregiving loved ones seemed able to separate themselves for a few days at a time, I found myself visiting my mom daily, providing care in the following ways:
    • Sitting with her at lunch to better ensure she would eat something without wandering away from the table.
    • Being visibly present for a few hours of her day.
    • Being her advocate. I communicated on her behalf with the staff at BeeHive, the nurses and doctors, and the hospice workers.
    • I simply cared for her by making sure she had everything she needed to be comfortable.
Momma had some very sweet friendships at BeeHive.

If you had to do it over again, what would you do differently in caring for your mom?”

I’d probably tell you, “Not much.” Each step of the journey with my mom was prayerfully taken. Decisions I needed to make were made with the help of God and those who love me best.

“What do you want your children to do if they someday have to deal with you having a diagnosis of Alzheimer’s too?”

I would tell my children …

  • Re-read my blog. I wrote it for you. You might find some helpful insights there.
  • Don’t be afraid to ask for help. Be specific about what you need.
  • I want you to feel comfortable making the decision to entrust my care to a place like BeeHive sooner, rather than later. Even if I protest at that time, it will be okay. It will be good for us.
  • Even if you’re not there every day, please don’t forget to visit me.
  • But most of all – even if I’m unable to remember who you are, I love you very much and always will.

Turning the Last Page

From the moment I arrived at BeeHive, it was apparent to me that we would be experiencing the final chapter of Mom’s remarkable sojourn on earth. The stroke had dealt a crushing blow, adding further injury to Alzheimer’s furtive chipping away of her mind and body.

I will forever be grateful to the staff of BeeHive for graciously allowing me to stay at my mother’s side during her final days. It was a hard week, filled with opportunities to be a comfort to my mother, and moments both endearing and bittersweet. My overnight vigil afforded a rare opportunity to observe the night shift at work, deepening my appreciation for those dear ones who watched over the residents at night.

On May 24, 2020, a beautiful Sunday morning, as I held her hand in mine, the final page of Momma’s life was quietly turned. My sweet mother’s story on this side of Glory ended just as I hoped and prayed: Alzheimer’s lost and God won as He called her gently Home to begin the story that never ends.

The Decline: Falls & Playing on the Floor

My poor mom! She’s got quite a few nasty facial bruises and abrasions sustained in recent falls. Let me be quick to say that my mom receives EXCELLENT care in her abode at BeeHive. None of the falls she has experienced have anything to do with her not being closely monitored. The staff does their best to keep an eye on her, and so do I.

Case in point: earlier this week I was just a few feet away from her when she suddenly decided she was going to attempt to transfer herself from her wheelchair to a nearby recliner. She ended up unceremoniously dumping herself onto the floor in the process. Thankfully, she wasn’t injured this time, but that just demonstrates how quick and stealth-like she can be when she sets her mind to doing something.

Much thought and effort goes into “how to keep Charlotte safe” at BeeHive. I surely appreciate the staff’s diligence, their willingness to keep tweaking medications, schedules, and processes in order to create an environment where she is as safe as possible. I make every effort to work with them and support them in their endeavors, and her team of caregivers is always more than willing to give my ideas a try.

I know some of the readers of my blog may be experiencing similar difficulties with their loved ones, so thought I’d share a few things we have tried which seem to help.

A floor alarm is in use by her bed, which helps the staff know when her feet hit the floor. She also has a wheelchair alarm which will alert them if she lifts her weight off of the chair. Unfortunately, alarms only let you know that the loved one is already in motion and caregivers may not be near enough to respond before the incident occurs. The greatest strength of an alarm is that it brings help sooner than later.

Learning her habits and “reading” her signals is a very important part of anticipating her risky behavior. For instance, they know that mom can no longer reliably sense when she has to use a toilet, and her ability to voice a need to “go” varies greatly daily. However, through observing mom and recording her habits, they know that it is wise to wait about 45 minutes after lunch when she’s getting a bit sleepy to take her to use the restroom, and then put her in bed for an afternoon nap.

Mom likes to tootle around in her wheelchair, but can get into a bit of trouble as she explores the rooms of other residents and tries to get in their beds or chairs. Restraints aren’t allowed, but her caregivers have learned that mom will stay put and sometimes take a quick nap if she is placed in one of their comfy recliners (and reclined). She also likes to sleep on one of the roomy couches; if she seems sleepy and is trying to transfer herself to a couch, they help her get comfy by bringing her a blanket and pillow. Dolly sometimes joins her for a little snooze.

Mom’s risk for falls is complicated by the fact that she seems to enjoy being on the floor. Sometimes she is playing on the floor like a small child, inspecting the wheels on her wheelchair, or scootching around on her bum in a crab-like crawl (see the sassy video below). Other times she just wants to sleep on the floor. It’s HOW she gets down onto the floor that is risky and causing her injuries (that and falling asleep in her wheelchair and then toppling out). If the staff sees her attempting to get down on the floor, they have learned she will become agitated if they keep picking her up and putting her in her chair or bed. It truly is best to help her get down there safely and let her hangout down there until it’s time for the next meal or activity.

As you can imagine, the sight of a frail-looking, elderly sweetheart crawling around on the floor is a bit disturbing to visiting family and guests who sometimes assume that the staff is just not paying attention.

To keep the staff safe from undue criticism, my granddaughter Mia helped me decorate a few little fabric signs for her back which help communicate that she is safe and happy. The staff pins the little signs to her sweater so she can play to her hearts content and everyone knows she’s okay.

Mom’s ability to communicate her needs is definitely on a course of swift decline. I know I say this a lot, but I am incredibly grateful for those who lovingly care for my mom. I couldn’t possibly meet mom’s needs as well and keep her safe if I were caring for her on my own. How wonderful that, through BeeHive Homes of Oregon, Agrace Hospice, and Bluestone Physicians Group, I have doctors, nurses, nursing assistants, personal care workers, a cook, a pharmacist, a social worker, and an activity director who ALL care about my mom so very much.

Mom is safe. I am blessed.

The Decline: When Birthdays Are No Longer Celebrations

Mom turned 86 years old yesterday. I think I have been saying this for three years, but I honestly believe this may be the last birthday she will celebrate on this side of heaven. Nonetheless, I baked a cake especially for her and brought it to share with her friends at BeeHive.

I didn’t remember to take a picture of my cake, but found this photo and a recipe similar to mine.
Photo credit: https://www.keyingredient.com/recipes/3782245034/ding-dong-cake/

In my heart, I knew the birthday cake probably wouldn’t matter to her. But it mattered to me. My mother’s life is worth celebrating.

As expected, she enjoyed eating the cake, but her birthday didn’t phase her. She didn’t seem to understand or believe it when I told her it was her birthday, and the greetings of her friends and caregivers were met with disbelief and a blank expression. She looked quite confused (and maybe a little mad at me) while her friends and caregivers sang ‘Happy Birthday’ to her after lunch. She didn’t want to blow out the candle on her piece of cake, but she enjoyed eating it.

She didn’t want to open the cards from friends and family, or the present her brother sent her. She didn’t seem aware of the sweet gift of balloons and a cute little teddy bear that one of the staff purchased for her – but I basked in their love for her on her behalf. I opened the cards and gifts for her and set them up where she could see and hopefully enjoy them.

The birthday display didn’t seem matter to her, but it mattered to me. My mother’s life is worth celebrating.

As we sat in her bedroom that afternoon, she would talk to me, but her eyes would be closed, or open just a tiny sliver. She would scootch around in her room a bit in her wheelchair, but with eyes closed and directionless. I could tell she really wanted to go to bed and sleep, so I asked the staff to help me get her in bed.

Mom shuts her eyes to her world when she is talking

Today was the first day the staff needed to use a Hoyer lift to help her get out of her wheelchair and into bed. The fact that it was her birthday wasn’t lost on me. This contraption is a gift; a gift which will keep mom safer as she transfers. This gift will also keep those who care for her safe from injuring their own backs as they assist her. Part of me wanted to cry knowing that mom was at the stage of care where this device was even necessary; but the other part of me smiled knowing that it was a blessing.

As I celebrate this woman’s extraordinary life, I pray for those who are caring for her. They are a blessing to me, and a gift worth celebrating too.