Nursing – Barefoot Lily Lady

A-Z Caregiving Tips (P & Q)

Here’s the next in a series of Tuesday’s Caregiving Tips posts inspired by A-Z Caregiving Tips (an article in Alzheimer’s Today pictured below). A diagnosis of cognitive impairment or memory loss presents caregiving challenges, each as varied as the person experiencing it. Alzheimer’s was the diagnosis that spelled memory loss for my sweet mom. You can read my previous posts for my personal tips on A – O. Today I am sharing my thoughts about “P” and “Q.” Thanks for stopping by to read my blog. Readers, you are most welcome (and encouraged) to share your own tips and observations about dementia caregiving in the comments below.

If the generation before me said, “Mind your p’s and q’s”, it was usually said in a firm tone of voice. It meant be polite and mind your manners–it might also mean to watch your language. Today we have come to the letters ‘P’ and ‘Q’ in our alphabet-inspired suggestions for dealing with loved ones with dementia. Both letters speak to watching what we say–‘P’ encourages us to fashion our conversations in an encouraging way, and ‘Q’ reminds us to omit certain words in order to help our loved one avoid the embarrassment of not being able to remember a person or specific event. Both are equally valuable tools in the toolbox for good caregiver communication.

Please affirm what I contributed and still do contribute.

I feel like I’ve covered this in previous posts, but it probably can’t be overstated. For as long as my sweet Momma was able, it was important to let her tell and retell her stories of her years as a nurse. The day would come when she could no longer recount those stories. At that point, it became my turn to tell her the stories I remembered her telling me. One such conversation went something like this:

Momma, I remember when the whole city of Milwaukee was snowed in and you stayed at the hospital and worked three days in a row because no one could get to work on the deep, snow-drifted roads. Then someone gave you a ride home on a snowmobile. First, you had them take you to the grocery store so you could buy your family food to eat, then he took you the rest of the way home. I remember that, even though you were very tired, you fixed us supper, then slept for a very long time.

Momma would tell and retell the story of her watch.

The story was actually a confabulation — a mixture of truth and her own version of the truth. As a nurse, she had always worn a watch with a sweep-second hand so she could take pulses the old-fashioned way. Momma still liked to wear the last watch she owned as a nurse. There came a day when neither story lingered in her mind. It was my turn to point to her watch and help her recapture that story, if only for a moment.

Oh, how my mom loved to work with children–her own and the children of others. In addition to being a very involved mom, she was also a leader of a local Brownie troop. Later, she would work for many years as the secretary for the Awana girls’ club. Her grandchildren adored her. No doubt the open-fridge policy had something to do with their love of spending time at their grandparents’ home, but their teenage years were nurtured and fed in more ways that food because mom and dad gave each of them a housekey and made sure they knew they were always welcome.

For my part, I loved to reminisce with mom about some of the special ways she blessed our family. I would show her photos of some of the fun times she had when working with kids in the Awana program.

One way I helped mom feel like she was still contributing something valuable was by inviting families with young children to come and share a meal with us. I would tell mom that the kids were hoping she’d teach them something about coloring, or help them with a hard puzzle. She delighted in those times around the kitchen table. As they colored, she’d proffer her wisdom in how to hold the crayon or colored pencil in such a way as to shade the color onto the paper evenly. If she was working on a puzzle with her little friends, she’d share a tip and demonstrate how to put puzzle pieces in color groupings to make it easier to find the piece needed.

Quit quizzing me with Who, What, Where and When questions. I would add Why to the questions we needn’t ask.

In the earliest stages of Alzheimer’s, mom seemed to struggle with the Who questions the most, followed by Where. Names which had been familiar would drop off her radar. As I spent more time with my mom, I learned not to ask her who she had lunch with on Sunday, or who taught the discipleship class she attended. As the names of family started to slip, I learned to slip the name of the person we were with into the conversation so that mom could be reminded of the name.

For instance, as her neighbor and friend, Gisela, was approaching to have a chat with mom in the front yard, I’d greet Gisela by name. Later in the conversation, I’d say something like, “So, Gisela, you and mom have lived in this neighborhood together for over 50 years, haven’t you?” Then the conversation could continue with mom and Gisela reminiscing about old times.

Minding our p’s and q’s in dementia caregiving helps ensure a smoother passage on the labyrinthian road in life marked by memory loss. Thus far in medical research, there are no fixes for this formidable detour of the mind. Caregivers with a well-equipped “caregiving toolbox” can bring roadside assistance and a little extra joy along the way.

A-Z Caregiving Tips (M)

Written with love and great admiration for all those who are caring for a loved one who is facing Alzheimer’s or any other diagnosis that spells memory loss. I write from my experience of caring for my sweet mother in her later years with Alzheimer’s.

Here’s the next in a series of posts inspired by A-Z Caregiving Tips (pictured below). A diagnosis of cognitive impairment or memory loss presents caregiving challenges, each as varied as the person experiencing it. Alzheimer’s was the diagnosis that spelled memory loss for my sweet mom. You can read my previous posts for my tips on A – L. It seems I have a lot to say about “M,” so I will focus on that for this week.

Make new ways I can be of service to others

Mom was a nurse. A dedicated and amazing nurse. Even after she retired from her long career in nursing, she still practiced nursing in an unofficial way as she came alongside family and friends as they went through their physical trials in life. She was dad’s constant companion whenever he faced any of his cancers and surgeries. She served her friends as the requisite driver and responsible party when those friends faced day surgeries of various types. If someone was hospitalized, she was almost always one of the first visitors. Several of her friends had her come along to their surgeon’s or oncologist’s office when they were going to receive their scary diagnosis. Mom knew just the right questions to ask and how to help her friends through the difficult days ahead.

The time came when Mom was the patient with symptoms of short-term memory loss. I’m sure she knew something was amiss long before I started noticing memory blips. Who knows how many years she wrestled with that knowledge alone? Based upon dated notes and lists I found here and there, I would say for a few years.

Although Mom forgot many things, the experiences of her lifetime still served as a guide in her daily interactions. Even after mom moved in with me and then later into assisted living memory care, I routinely saw the nurse in mom present when she’d notice someone wasn’t feeling well and then do her best to make sure they were cared for appropriately.

Momma lovingly putting her “babies” to bed

She usually couldn’t remember she was my mom, but I saw the loving mother in her displayed in the way she cared for dolls. It was like a special window into her past which allowed me the privilege of seeing what she may have been like when she mothered me as a baby. (Mom and me in this photo.)

Let me share just a few photos of her doing things which made her feel useful during her years spent living with dementia.

I’m thinking now of a resident at the assisted living memory care home where my mom lived for her last 14 months of life. June was usually the first one up every morning. She took very seriously her job of raising the window shades at the start of the day. The staff would then present her with a large basket filled with freshly laundered clothing protectors (bibs) and towels. June took great pride in folding them.

My mom would do the same thing when she was living with us for a few years. She loved to fold laundry, especially when it was warm out of the dryer. The warmth felt good on her arthritic hands. She would also dry dishes for us. Her legs were unsteady, so I would set her up with everything she needed at her place at the kitchen table. Mom had also been into gardening, so I would occasionally try to get her outdoors to help me. She especially enjoyed deadheading and cutting back spent foliage. Her specialty, however, was sweeping. She couldn’t stand to see even one leaf on the deck or porch, so we’d arm her with a broom and she’d happily sweep for quite some time.

I can’t talk about this subject without thinking of Heather, an amazing blogger I follow who cared for her sweet mother too. Heather’s mum, Margaret, had been an artist, so Heather would play to her mum’s interests and strengths by creating art therapy projects for her to work on throughout the day. They even opened an Etsy shop in order to sell some of her ‘Made by Mum’ projects, donating a portion of their profit to the Alzheimer’s Society. Heather’s amazing website Creative Carer is filled with photos and tutorials, a link to her very helpful and inspiring blog, and oodles of practical ideas for caregivers who desire to keep their loved one meaningfully engaged.

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.”

Charlotte P. Boyles, RN

Momma was still in bed when I arrived for a visit earlier this week. I learned that she had experienced two nights this week without sleep and it seemed to be catching up with her today. She did NOT want to get out of bed and had already missed breakfast and lunch. The hospice nurse was there visiting and asked me if this sort of thing had happened while I was still caring for her in our home and, if it did, how did we handle it.

I told her that it did happen. It was usually just one night and full day without sleep, but that Momma could sometimes go for 2 or 3 days with little to no sleep. When sleep would finally come, she’d be much like she was today – out cold. I soon learned it was very difficult to awaken her and try to cajole her into doing something she didn’t want to do (like changing clothes or bathing). She would be so groggy and uncooperative. On those days – right or wrong – I would just adjust my schedule to hers.

“So, when she does wake up, what’s she like?” the nurse further queried. I told her she would perk up and she’d be like a different person. The kind and thoughtful Charlotte would replace the grumpier, exhausted Charlotte.

Sure enough, before the hospice nurse left the building, Momma awakened. She was sitting up, got dressed, was chatty and very hungry. Previously verbally unresponsive and only opening her eyes a sliver, she was now bright-eyed and complimenting the nurse on her outfit and telling her how nice her hair looked.

A night and day difference.

I decided that the crisis was over and it was time for me to go home. Momma had already wheeled herself out into the great room and was chatting with one of the other residents. As I exited the building, I threw a glance over my shoulder and saw that my mother had wheeled herself up to another frailer looking resident. There they sat wheelchair to wheelchair with my mother gently stroking the woman’s arm, asking her how she was feeling today and wondering if there was anything she could do to help her feel better.

Charlotte P. Boyles, R.N. was on duty. My heart couldn’t help but swell with love and admiration for my mother, the nurse.

Forgetting Time

Tissue alert.

This post is another in a series of my Facebook posts from 2015 related to caring for my mother. It’s really hard for me to re-post it without shedding my own tears. Those who are walking alongside a loved one struggling through the various stages of Alzheimer’s will probably relate very well. By the time you realize that the momentary lapse of memory is something more than the natural aging process forgetfulness, hints at “forgetting time” or how to tell time have already begun. Continue reading “Forgetting Time”