One recent thread on a Facebook group for dementia caregivers discussed the topic of how to respond to people who say “I wish I could help.” Most have good intentions, but no concrete offers of help. Others are just making polite conversation and really have no intention of helping. One tongue in cheek caregiver response was, “I’m going to start a list to hand them.”
We all laughed.
One longtime caregiver’s contribution to the post was, “I think we should all make our own list to have ready whenever we hear that offer.” Before long, we had created a rather long list. Some of our responses were a bit of a tease, like the caregiver who said, “If you want to bring me a gift, bring Kleenex! My loved one goes through two boxes a day!” We all laughed because an obsession with Kleenex and toilet paper seems to be prevalent in the world of memory loss.
Let me share a few more of the ideas culled from our group effort:
Instead of “let me know if you need anything,” please just show up on my front porch with a good cup of coffee.
Another caregiver added her twist on the impromptu coffee date idea: “Yes, show up on my front porch with a cup of your favorite coffee. Then sit down with my loved one and tell me to get lost for awhile while you drink your cup of coffee.”
Talk to me. Listen to me. I don’t really have someone I can carry on a conversation with anymore.
If you see a need that you can meet, just do it. It will make my day.
One woman’s husband asks her each morning, “What can I do for you TODAY that will make your life easier?”
Send me a card once in awhile (I have a special friend who does this every single week).
Share with me one of your special memories of my loved one. In doing so, you will help me focus on the good and remind me that their life mattered.
Tell me that what I’m doing matters.
One item on the list was my favorite: Ask God to show you how you can help. I promise, He will.
For some of my readers, this post may be TMI. When writing about my mother, I try to be judicious in the stories I tell and respectful in the details I share. I hope this isn’t crossing that line. What I am about to tell you needs to be written because it is a daily reality faced by those afflicted with Alzheimer’s and those who care for them.
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.
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.
Sleeping through the night is the goal of every caregiver of a loved one with Alzheimer’s. To increase the chances that my mother will sleep at night (and that I will too), one of my challenges as a caregiver is to keep her awake and occupied during “normal” waking hours.
Let me share a few of the things which I have found helpful in my caregiving journey.
Coloring – I have written briefly about the joy of coloring in the post “Tuesday’s Tip: Adult Coloring Books,”but would like to elaborate a bit. At first introduction to coloring, Momma didn’t want a thing to do with it. We bought a few “adult coloring books” and a set of colored pencils and hoped she would enjoy spending a little time coloring and less time sleeping. We had a paid caregiver who came on Friday nights and another who came on Sunday mornings. Each of these ladies enjoyed coloring, so they would get out their own coloring stuff and color, and soon Momma took interest and would join them. She’s actually quite good at it.
We soon bought her oodles of coloring books and this amazing colored pencil set. She would spend hours coloring, and even enjoyed sorting the colors in the case to her liking.
As her Alzheimer’s has progressed, her desire to color has diminished somewhat. She grows a bit frustrated by the super-detailed coloring pages she enjoyed at first, so we now purchase coloring books with bigger images and a little less detail. She has also gravitated over time to choosing just greens and yellows, so we keep her colored pencil case supplied with plenty of shades of green and yellow.
Puzzles – I’ve written about how much puzzles have been a blessing in our caregiving experience, first writing about it in a pre-blogging Facebook note titled, “Puzzled.” As with any other creative activity, if I ask Mom if she wants to do a puzzle, she’ll usually say an emphatic “No!” But, if I just sit down near her and start working on one, she’ll join the fun and will soon be pushing my hands away so she can work on it herself.
Not all puzzles are created equal when it comes to being friendly for those with cognitive or memory disorders, arthritic hands, or poor eye-sight. I am pretty impressed with puzzles by Springbok. Their puzzles are cheerfully bright and colorful and aren’t baby-ish. Puzzle pieces are larger and thicker than most puzzles, making it easier for elderly, shaky hands to handle.
Bible and Devotional Reading – Momma is a woman of faith who loves the Lord Jesus with all of her heart. It warms my heart to hear her talking with Him in prayer throughout the day and the night. Several of her well-marked Bibles will attest to the fact that she was a faithful student of the Word of God. Sadly, Alzheimer’s makes reading for understanding very difficult and Momma no longer reads her Bible like she used to do so faithfully. How thankful I am to know that even when she can no longer read, the Word of God stored up and treasured in her heart will still speak to her and bring her comfort.
Mom was always a voracious reader, but can now only read small bits with understanding, and she may read and re-read the same page for an hour. Devotional books are perfect, as each daily devotional is only a page or two in length, succinct in thought, and features just one or two verses from God’s Word. I make sure she has several devotional books to choose from whenever she feels like reading a bit.
Fellow Caregivers, let’s hear your ideas too! EnCOURAGE one another daily!
One of the biggest challenges of every caregiver is keeping their loved one occupied, feeling productive and useful. I would like to share three things we have discovered my mother enjoys.
Mom’s knees aren’t real stable, so standing for any length of time is difficult. Though I could do the job faster myself, it helps her feel productive if I allow her to dry dishes for us. We set out a towel at the kitchen table, then put the dish rack on top. She has fun sorting, matching and stacking the dishes and flatware as she dries. Mom is very thorough – even drying the dish drainer when she is finished.
Someday I would love to make a quilt. My Pinterest board, Quilty Crafty Ideas, attests to the fact that I’m particularly drawn to scrappy-looking quilts. One day I lugged my sewing machine upstairs from my basement sewing room to the kitchen table so I could keep an eye on Momma and enjoy sewing for a few hours. As I sewed scrappy squares together in pairs for a future project, I discovered quite by accident that my mom enjoyed playing with my fabric squares. I gave her a small pair of scissors and let her snip the threads which connected the pairs. She was happy and content for the entire afternoon.
I have a nice little button collection. My grandchildren love to have me dump them out on the living room floor and we can while away an hour or more playing sorting games and choosing favorites. It dawned on me that mom might also enjoy this tactile sensory activity too. I dumped them on a big tea-towel on the kitchen table and mom spent about 3 hours playing with them. I gave her a bunch of little dishes and she sorted them into color families. Sometimes she would look for buttons she particularly liked and then line them up all in a row. Occasionally she would see one that brought back a memory, such as the black buttons that she thought used to be on one of her coats. Button sorting has become a regular activity.
I’d love to read about your activity ideas too. Please do share your favorite activity in the comment section below.
Caregivers, be encouraged to try something new and keep pressing on!
Keeping loved ones with dementia disorders such as Alzheimer’s engaged during the hours when you’d like them to be awake is a key to combating the dreaded, but all too common disorder called Sundowner’s Syndrome. Sleep is vital, not only for our loved one, but for those of us who provide their care.
My mother never seemed to develop a traditional hobby. Following her retirement from nursing, she tried her hand at cross-stitch and dabbled with making earrings, but “crafting” just wasn’t her thing. Our family wasn’t much for sitting around the kitchen table playing cards, working puzzles, or coloring either.
My Mom took over gardening duties when Dad was in his final battle with cancer. I’d say she was a natural at gardening, enjoying spending time “scootching around” on the ground tending her plants and actually enJOYing pulling weeds. Nearly every inch of dirt seemed to burst forth with floral splendor. When we found it necessary to move her out of her home and into a senior apartment, we brought along her favorite blue pots so she could enjoy tending a few of her favorite flowers on her little patio.
But, her favorite past-time by far was serving God by serving people. One of the hardest things about her journey with Alzheimer’s was watching her having to give up her various ministries and activities. One by one, as her driving became limited, so did her opportunities to serve. As her knees and arthritic hands gave out on her, the desire to garden fell away. When her memory faded, so did her ability to have meaningful relationships with her friends. Faded memories were slowly replaced by compulsive behaviors common to those with dementia. Pacing back and forth. Rummaging through drawers and closets. Sorting through her purse. It soon became evident that we needed to introduce something enjoyable so that we could redirect her attention from these compulsive behaviors to something encouraging.
We ordered a few coloring books; at first she didn’t have much of an interest. So I would sit at the dining table and color in her books. Sooner or later, out of curiosity, she would join me. Before long, she was coloring on her own. Now, when children come to visit, she loves to have them color with her and will oftentimes take on the role of “coloring teacher” as she instructs her students on the finer points of choosing the appropriate colors, staying within the lines, and shading and outlining.
The gardener in her loves flowers and butterflies, so many of her coloring books feature a plenitude of these these creatures. Because Momma is a woman of faith, we have found that coloring books with Bible verses are especially meaningful to her. [For a link to one of her favorites, click here.]
Wayne bought her this lovely set of Thornton’s colored pencils in a zippered binder-type case. It was a game-changer! For some reason, she is partial to greens and yellows when coloring, but she loves sorting the many pencils in this case. If you should stop by for a visit, you can also be sure that she will take great delight in offering its colors within and an invitation to sit down and color with her.
This Tuesday’s Caregiving Tip: To calm, encourage and distract the anxious Alzheimer’s mind, try coloring.