Tuesday’s Tip: Whiteboards

“Aaaarrrgh! She keeps asking the same question over and over again. I’m going to go crazy! How can I handle this?”

Caregivers everywhere know full well that repeated questions are a common symptom of dementia and a frustrating, nerve-wracking, mind-numbing daily reality.

Dr. Natali Edmonds, PsyD, APBB of Dementia Careblazers has some wonderfully helpful YouTube videos which address many helpful topics for those she calls “Careblazers” – those caring for a loved one with dementia disorders. Dr. Natalie addresses the problem of repeated questions here, but let me add a few tips from my personal experience related to dealing with my mother’s repeated questions.

One of the best ways to handle the problem is to patiently answer the question and remind ourselves that it is the disease causing the loved one to repeatedly ask the question. I must admit, the everyday battle eats away at my patience and drives me bonkers, with my mother’s hearing loss adding another level of crazy. My husband and I are so accustomed to having to use our loud voices to communicate with her that we sometimes don’t realize when we’re shouting at someone who may be visiting us in our home.

One of the smartest communication tools we have purchased is a simple lap-size white board and a few Expo markers. This little investment has brought great returns in helping answer the questions looping around in Momma’s brain. Yesterday’s question of the day was, “Where am I?” After verbally answering her question a few times, I just pulled out her whiteboard and wrote down, “I live with my daughter Cindie and her husband Wayne. This is our home.” Momma read the answer aloud on several occasions and seemed calmed by having her answer.

A great visual reminder

One of mom’s most often asked questions is: “What am I doing today?” I often use the whiteboard to inform her as to what is happening on a given day, writing this down for her in “to-do list” fashion. For example, if I plan to wash her hair, I’ll write it down as an item on her check-list. Also on the list are tasks she still enjoys doing, like folding laundry and drying dishes. Writing those tasks down on the whiteboard gives her the satisfaction of being able to cross off the task once it is accomplished.

Momma loves it when guests come to visit, but is visibly agitated when she can’t remember their names, repeatedly asking, “What is your name?” Writing names on the whiteboard helps her relax a bit (name tags help too). If children are part of the mix, we have their parents prepare them ahead of the visit for the fact that Mrs. Boyles will ask them the same questions over and over again. Kids always seem to “get it” and are very patient and kind, talking loudly to her and flashing their big comforting smiles at her each time they answer one of her many questions.

Mom writes notes to us too

The road to communication is a two-way street. Mom will sometimes use the whiteboard to ask a question or make an observation. Other times she’ll write down her thoughts, giving me a little window into her concerns. Many times she will write down something she is thankful for, such as the picture you see below. In this picture she is writing a little note of thanks for someone whose visit she had enjoyed.

Well, that’s my tip or suggestion for this week. I’d love to hear a few of your great communication tips! Please feel free to share them in the comments below.

 

Winter Drags On

Spring keeps teasing us here in Wisconsin, drawing us out of our houses for walks in the sunshine or a little time in the garden, and has us washing the salt off of our cars and sweeping out the garage. Then, BAM! Winter is back!

To think that just a week or so ago I was working out in the garden without my jacket and sometimes without my shoes Continue reading “Winter Drags On”

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!

A Grace of Alzheimer’s: a lesson in suffering

My heart was recently challenged by reading a book from the Heroes of Faith series – the biography of Watchman Nee by Bob Laurent. I was so moved and inspired by this man’s faith, his godly wisdom, and courage in the midst of persecution and trials of life greater than I will ever experience. So challenged was I by his life and teaching that I found myself yearning to learn more from him. I reserved two books written by Nee through my local library: “The Normal Christian Life” and “The Character of God’s Workman,” and am currently reading the later.

I take a book with me when I go to the gym each morning, having purposed in my heart to use this time to exercise my body and feed my heart, mind and soul too. I have come to treasure this precious time…an hour on an exercise bike is over before I know it. As I pedaled and read today, something in chapter 3 made me think of my dear mother.  In this chapter, Nee speaks on 1 Peter 4:1, regarding our Lord’s attitude toward suffering and its admonition for Christians to have the same attitude and mind as Christ in our various earthly encounters with suffering. Nee notes that many Christians who encounter trials in life find themselves side-lined, withdrawing from serving Christ. Nee challenges the Christian reader by saying:

“No one who serves the Lord may stay home during rain and go forth only after the sun comes out. If you have the mind to suffer, then you will work on in spite of privation, difficulty, pain, sickness, or even approaching death.”

I immediately thought of my mom when I read that bit today, causing me to reflect on some of the ways she handled the trials in life.

When she was faced with having to take early retirement from her nursing job due to budget cuts the county was facing, my mom rejoiced. Now she could serve the Lord more in her local church.

My parents’ ministry to their family also carried on – cancer, headaches, bad knees and all. Where most retired couples have empty bedrooms, my parents had a steady stream of children and grandchildren occupying those rooms. It didn’t matter if they were out of a job, or cash-poor students, there was a bed with clean sheets, and a fridge full of favorite foods.

Each time my Dad faced a cancer diagnosis (five different cancers in his lifetime), mom was by his side for his surgeries and treatments. She could have used that as a perfectly plausible reason to back out of her ministries, but she kept on serving in the church, working her ministries around helping him. She also encouraged my dad to persevere in his church attendance and ministry as long as he was able. Only the final debilitating scourge of sarcoma took my dad away from his volunteering as a handyman at his church, and as a driver and treasurer for Christian League for the Handicapped.

When my dad died, my dear mother grieved, but she didn’t wallow in her grief and discontinue her ministries. Quite the contrary! She and a friend who was also a recent widow set their minds and hearts toward forming a ministry to other widows and widowers.

As I look back over her numerous notepads and journals that I packed when she made her move from Milwaukee, I can see that she was aware her memory was failing long before it became noticeable to anyone else. If I read between the lines, I can see there was a certain amount of fear that came with the awareness of memory loss and where it might lead. Knowing that her memory was fading didn’t stop her from serving in her many ministries. Even when the disease reared its ugly head enough for her friends to take notice, she never said, “How can I possibly take on the Lord’s work when I can’t even care for myself?”

Though my mother certainly had a “mind to suffer” in whatever hard things life threw her way, there did come a time when Alzheimer’s dealt a life-altering blow. The day came when driving to church was no longer an option. Another day came when planning anything was an insurmountable obstacle. Then, a time when remembering names was an impossibility. Everything about life was changing and becoming very hard. Only then did her ministries begin to fall away – not because she wanted them to, but because it was time.

Even now, in this time of life “approaching death,” I see in my sweet mother’s life yet another “grace of Alzheimer’s” – the grace of Christ-like suffering.

 

Alzheimer’s and Money Worries

One of the things that keeps Momma up at night during her Sundowning episodes is wondering whether she has enough money. She’ll go through her purse countless times in search of cash, a checkbook, a credit card…something. Anything that tells her she is okay financially. Continue reading “Alzheimer’s and Money Worries”

Sweet and Sad Moments

img_5147Just as I hopped in my car after my “me time” at the gym this morning, I heard my phone chime. It was a text from my hubby telling me that my Momma missed me and was hoping I’d come home soon.

Hubby filled me in on the goings-on during the two hours while I was away. I guess Momma kept wandering around looking here and there, obviously looking for someone. When Wayne offered to help her, she told him that she was just looking for her family. She was a little worried I wouldn’t come home.

Sweet and sad at the same time. Sweet that she was looking for me and still knows I am family. Sad that my absence for even a short time made her feel abandoned for even a moment.

Upon arriving home, I found her seated on the edge of her bed watching the door, just waiting for me. The second I walked in the door, “Oh, there you are, Cindie. I was hoping you’d come back.”

img_5148
Note the arrows where she’s trying to figure out which word to read next.

As Momma’s understanding of my relationship to her as a daughter fades, these very sweet, melt my heart moments, are happening more often now. 

After supper Momma was quietly coloring a picture in her coloring book when she looked up at me and said with a smile, “This picture I’m coloring is for you and Dad.” She went on to read and tell me that it says, “When I am Afraid, I Will…” She stopped abruptly, unable to finish deciphering what the artistic rendering of Psalm 56:3 said. After a few moments of trying her best to figure it out, she said, “Oh, well, you’ll figure out what it says.” I told Momma it was very sweet of her to color that for me, to which she responded, “Well, I have to do something for you and Dad, for all you’ve done for me, and I don’t know what size you wear.”

 

 

 

 

 

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.