family gatherings – Barefoot Lily Lady

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.

N – Note that I take your words literally, so avoid teasing and sarcasm.

In the early stage of memory loss, mom would sometimes take “just kidding” comments quite literally. Likewise, when mom reached what was thought to be the stage of “moderately severe” memory loss, it seemed that her ability to understand and appreciate sarcastic humor and irony disappeared too. This was especially noticeable in social “table talk” situations.

Mom enjoying putting together puzzles (3 in one evening!) with the help of her grandson Matt and her great-granddaughters Mia and Noelle. Puzzles were helpful in guiding enjoyable conversations with mom.

Teasing and sarcasm are part and parcel of family gatherings such as Thanksgiving. We like to tell stories on one another and kid each other about silly things we’ve done lately. We sometimes use tongue in cheek jesting during our bantering around the table. Mom always had a quiet sense of humor–she would appreciate a good joke, but usually was not the one to tell it. She’d smile at the kids. But now, while she herself could often say something witty, there was no understanding of the “punch line” to someone else’s joke and a blank look at any attempt at humor.

Turning off the humor at the table isn’t the answer, but understanding how our loved one with dementia might be processing the conversation can be helpful in making the conversation inclusive for them too. Our bigger family dinners (e.g. Thanksgiving and birthdays) were the most confusing for my sweet mom. She would sometimes leave the table and go to the quietness of her room. When that would happen, family would go in an visit her one on one. She enjoyed that experience much more.

Another helpful tactic was to do something mom enjoyed at the table. Working on a puzzle or coloring became a unifying factor in conversation for her.

O – Own up to your mistakes in caregiving, but don’t beat yourself up about them. Mercy is new every morning.

I freely admit to making a lot of mistakes in caregiving. I recall days when my voice carried more than a little annoyance in it and harsh words would fly. Days when I was anxious and weary and my facial expressions did not communicate Christ-like love and compassion. There were times when I would confuse mom by asking if she remembered something when I knew full well that she couldn’t–or, similarly, when I would expect her to remember something we had already talked about. One of the hidden grace gifts of Alzheimer’s is that momma wouldn’t stay hurt and mad at me for long. She would soon forget my blunders and I would have another opportunity for a do-over in caregiving.

Likewise, in other relationships, there were times when I did not express my appreciation freely enough. I’m thinking of a time when I made my sister feel bad about how she handled a caregiving situation, rather than being gracious and knowing she did what she thought was best when she was taking a turn at caring for our mom. It’s sometimes easier to see the mistakes and failure of others than it is to see the same problem in our own lives.

It’s a wonderful thing for me as a believer in Christ to know that His steadfast love for me will never cease. Never. Ever. His mercy will never come to an end. Never. Ever. I praise God for His faithfulness in providing a daily (constant) supply of love and mercy. Knowing and believing the truth expressed in Lamentations 3:22-24 helped me through many times when I felt like a dismal failure as a caregiving daughter.

The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. “The Lord is my portion,” says my soul, “therefore I will hope in him.” (Lamentations 3:22–24)