Tuesday’s Caregiving Tip: Laminated Photo Cards

Whiteboards are a good tool we use to help Mom remember names.

Eventually, with very few exceptions, all those afflicted with Alzheimer’s lose the ability to remember names. In the beginning stages, it’s an occasional inability to remember the name of a friend. Somewhere in the middle stages of this mind crippling disease, my mother began having more trouble with names. I noticed names scribbled in notebooks, on church bulletins, on 3″ x 5″ notecards, and backs of envelopes. It was her tool for hiding the fact that she was beginning to forget the names of her close friends.

Momma belonged to a group of ladies from her church who called themselves “The Lunch Bunch.” Each lady friend took turns choosing the destination for their culinary adventures. It was a sad day when Mom decided she could no longer meet up with her friends. She told me it was because the lunch venues were so far away. In retrospect, the unspoken truth was Momma was embarrassed she could no longer navigate driving to unfamiliar places. Even sadder and more difficult to admit, remembering the names of her closest friends was becoming impossible.

Our church family has become Mom’s surrogate church family now that she lives with us. My mother enjoys visits from her new friends, but is nervous about not knowing their names. To ease her transition toward knowing the names of these new friends, I borrowed an idea from a friend I’ve never met who lives in Yorkshire, England. A fellow caregiver to her own mother with mixed dementia, Heather and I “met” on Creative Carer, Heather’s Facebook page dedicated to inspiring and giving ideas to caregivers for those living with dementia. Our mothers seem to be travelling parallel paths in the progression of their individual journeys in the uncertain world of dementia. Heather is amazingly creative in her approach to caregiving, capitalizing upon her mother’s lifelong passion for all things artsy and crafty (you’ll also find many creative art therapy ideas on Heather’s blog here). As her mother’s memory began to fade, Heather created some laminated pages for her mum, depicting life events, useful information, and snippets of joyful events that had happened in her lifetime.

The laminated cards are double-sided and fit perfectly in her purse.

With Heather’s brilliant idea as seed thought, I made some little laminated photo cards mom could keep in her purse. Each card has a photo of friends and family who come to visit, with names written on the card and perhaps a little reminder as to how mom knows that individual or family. I love seeing Mom discover these cards in her purse. It’s a perfect sundowning activity for her, as she loves to go through the contents of her purse during her late-night purse rummages.

Whenever a new friend comes for a visit, I take a picture of them with my mom, then create a card for her before their next visit. About an hour or so before a guest’s next visit, I take that card out of her purse and show it to her. She really appreciates having the card as a reference.

Next project on the horizon: create a few cards featuring her childhood, family, nursing school and wedding. Memories from her early years are still relatively intact; these cards may help Mom tell (and retell) her stories to visiting family and friends willing to sit with her for a moment and listen.

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!

Missing the ‘Old Life’

“What do you miss most about your “old life”? 

Michelle Daly posed this question for caregivers on a recent blog post. It’s hard for me to choose just one thing, so I’ll mention the ones that come to mind first.

I miss sleep. Uninterrupted sleep. I’ve been sleeping with a video baby monitor on my nightstand long enough now that I’m learning to tune out Momma’s “normal” noises and harmless sundowning activities, such as rearranging her drawers and taking inventory of the contents of her purse. I have learned to tune into her needs, such as times when she needs extra help in the bathroom, or when she’s afraid and confused. So, I am getting more sleep, but uninterrupted, monitor-less sleep would be nice.

Me and my guy

I miss impromptu ANYthing, but especially the little spur of the moment daytrips with my hubby. Those days when we would just hop in the car and end up at Devil’s Lake for a hike, or down on the UW Campus on one of the walking paths, or just meandering through an out of the way garden center. Fun times.

Momma loves Pastor Jeremy and his family!

I miss having people over for dinner. But I’m working on that one. Momma’s usually social self is impaired by her Alzheimer’s frets and fears, making taking her anywhere a chore and very stressful for her. But, the hostess in her loves to have people come and visit with us over lunch or supper, so I’m trying to incorporate more social time with others into our week. Last night our friends Jeremy and Anouk came over for a pizza night with their two children, Mia and Isaiah. Such fun!

A blast from our past – my twisty grandgirls

But what do I miss most? If pressed, I’d have to say “time with my grandkids” is the thing I miss the most. No more impromptu slumber parties, ‘Fun Fridays’, trips to the library, or excursions to the zoo or a nearby park that usually end with a trip to Culver’s for frozen custard.

Violet & Charlie in a friendly game of Othello

Tonight four of my grandkids came over for pie and ice-cream and a little visit. From the moment they walked in the door with their mom and dad, they were clamoring over what we would DO together.  The grandsons wasted no time in pulling out some classic board games. The boys took turns playing “Battleship!” with me, with George getting a little help from big sister Violet. Later, our five-year-old George brought out a chess set and asked for help in playing it. Even though this particular chess set has a few pieces missing, his Papa and Daddy helped him learn to make moves and we delighted in his gloating over captured pieces. Granddaughter Violet and her brother Charlie played ‘Othello,’ another favorite game of strategy. I even got in a few hands of ‘War’ with Henry. When I wasn’t playing one of the games, I was just watching and smiling…beaming, actually.

Momma and her little friend Mia enjoy coloring together.

I love these times with family and friends, and wish there were more of them and that they could be longer. But tonight, I’m just grateful for our little get-togethers. Momma loves to color and will gladly share her coloring books and colored pencils with her great-grands and little friends. Seeing children laugh and try new things brings a quiet joy to her eyes. The memory of their visit will soon disappear, but the contentment and joy linger in her heart just a little longer.

Are You the One in Charge Here?

Lately, my sweet mother has been more than a bit confused about her living accommodations, referring to our home as “this facility” and “this place.” Not long ago, she swept her hand out in gesture as if encompassing her living space and said, “Are you the one in charge of this place?” I told her yes it was our home and that Wayne and I both welcome her to live here. “Oh,” she replied, “are my meals and laundry included?” I assured her that they were. To which she replied, “Well, they haven’t fed me all day, and I think they’re stealing my laundry. I can’t find it anywhere.”

Not long ago, she was telling Wayne that “someone who works here” had given her some pills. She wasn’t sure who it was, but figured they knew what they were doing, so she took them. It was Tylenol, and it was me giving them to her just moments ago. Oh, and the “people who clean this place” and do the gardening around here just aren’t doing their job. The floors are always dusty. The gardens have so many weeds. “You should talk to them,” she insists.

I can watch Momma’s nighttime activity on a WiFi video monitor that sits on my nightstand. That’s a blessing because I know when she needs something…and a curse because sleep is interrupted quite often. On a few occasions, I’ve come down in the middle of the night to check on Momma because I could see on my monitor that she was crying. Sometimes it’s just confusion about where she is, but oftentimes it is her worrying about how she is going to pay for this place when she can no longer work and earn money. She’ll sometimes tell me that “they” are going to kick her out when her money runs out. On those occasions, I’ll sit with her for awhile and reassure her that she is loved, that she is retired and has plenty of funds, and that we will always take care of her no matter what.

One of Momma’s blue pots

Momma can make you smile with her wild tales about how she came to live here. On Saturday, a friend from church and her two young daughters spent the morning with Momma so that I could attend a Bible Conference with my husband. They had a delightful time, but, oh, the stories Momma told them while I was away. She enjoyed telling how this house was hers and that she shared it with us, describing how we had divided it up into her side and our side. And, of course, she had planted the gardens, adding to them over the years. (Mind you, she has only lived here since May!) She even shared with the girls that she had made her three blue flower pots when she was in kindergarten!

Of course, all of this is very real in Momma’s mind. That’s just a little taste of the confusion and disorientation that happens with the progression of Alzheimer’s. Not only is Mom confused about her accommodations, but also about the relationship of people to her.

“Mr. Winquist” and yours truly

Most days, she still knows us. Wayne is often referred to as “Mr. Winquist” – her term of endearment for him. Other days (mostly in the evenings), in her mind, I’m her sister Carolyn. As we look through picture albums or recall stories from her childhood, she tells tales of her youth as if I had been there too, sparing me the details with, “Well, you know. You were there too.”

My sister has been coming every other week or so to stay with Momma for a few days so I can get a little down-time. A few hours before each visit, I remind her that her daughter Vivian is coming. Sometimes she’ll give me a quizzical look and ask, “So, help me remember. Is Vivian my daughter? Or is she your daughter?”

On one of Viv’s recent visits, Momma came out of the bathroom and was looking for her Mom. Rather than remind her that her mother has been deceased for many years, Viv just went along with her and said, “Your Mom is not here right now. Can I help you with something?” Mom replied, “I just need to find my Mom.” I peeked my head out of the laundry room door and waved. Momma spied me and said, “There she is!”

So, in my mother’s mind right now, I’m her mother. That’s okay by me. She took good care of me for many years. Now, in this circle of life, it’s my turn to take good care of her.

 

“So, how many names should I put in the pot?”

The phone rang on Saturday morning. I answered, already knowing it was my dear mother, and I could almost guess what she would ask. She had a hair appointment every Saturday morning and would go grocery shopping on her way home. “So, how many names should I put in the pot?” That was mom’s way of asking us to come over for dinner.

It was our family tradition most Saturday evenings when our children were tweens and teens. Sometimes we’d hop on our bikes and pedal the 3 miles over to my parents’ home. Other times we’d pile the kids and the dogs in our car or mini-van and make the short drive to Mom and Dad’s place. Our Cocker Spaniels would be hanging their heads out the window, long ears flapping in the wind, their little nugget tails a waggin’, sniffing the air, and dancing with excitement when they sensed we were to Grandma’s street. Sometimes we’d purposely drive by the 105th Street turn-off and the dogs (one dog in particular) would cry and whine until we made a U-turn and turned on the right street. Momma would always have a treat for those granddogs…and they knew it. Sometimes just a dog biscuit or two (my dad always lost count of how many dog biscuits he’d toss them), or a little rawhide chew, other times a pig’s ear for each of them (their favorite)!

And Momma always had something delicious for us. Her barbecue spare ribs were fall off the bone scrumptious, and she made a homemade potato salad that became one of her most-requested recipes. She sometimes made a casserole we all liked; usually something she called Yumasetta (said to be an Amish recipe), or a taco-ish dish covered in Frito’s corn chips, or “Hearty Beef N Potato Casserole,” a recipe that was served at a Christmas luncheon at her church in 1986. On a hot summer’s eve, she made this seafood pasta salad that was better than any I have ever had. Oh, and her potato soup. Oh, my! Her creamy potato soup was SO good that our daughter Beth wanted it on her 15th birthday menu – along with crescent rolls (from a can), deviled eggs, and cherry juice!

Sometimes I’d bring a side dish or a dessert, but Momma usually told me I didn’t need to bring a thing. “Just bring yourselves,” she’d say. I think the kids preferred when I didn’t bring dessert because they knew they could count on Grandma having a favorite treat in her freezer – a Klondike ice-cream bar, which can best be described as a huge chunk of ice cream covered in a thick shell of chocolate. And if Grandma was out of ice cream, Grandpa Boyles could be counted on for a cookie (he always kept a stash in a Tupperware by the back door to share with the kids in the neighborhood, who sometimes affectionately called my kind-hearted dad “Cookie Monster.”)

We’d usually just watch a favorite television show or two together. I can’t remember what all we watched, but recall “The Dukes of Hazard” and “Dr. Quinn, Medicine Woman” being part of the line-up at one time or another. I mostly remember the lovely feeling of coming home to the house I grew up in, and being thankful that our children had grandparents close by – something I didn’t have when I was growing up.

I have a few of Momma’s favorite recipes filed away in my recipe box. I can almost duplicate her creamy potato soup, but have never come close to duplicating her potato salad. Nowadays, Momma no longer cooks, as I wrote about in my story, “When the Good Cook Can’t” some time ago.

Yes, the table has definitely turned. Momma now lives with us and enjoys meals at our table. My children are all grown up and have homes and families of their own. Now they pile their own kids in their own mini-vans (no dogs, though) and come over and cook for her too, as they have opportunity. We are so thankful that we can do this for her as she wrestles with memory loss related to Alzheimer’s.

Momma, now it’s our honor and privilege to return the abundant blessings you lovingly showered upon us. May we be as gracious, open-hearted, and generous as you.