Best Dementia Staging Explanation EVER!

If you’ve been following my blog for any length of time, you know I love to write about gardening and share some of the 4,987 pictures of flowers I have on my phone.

You also know that I cared for my mom in the last years of her life while she battled Alzheimer’s. I documented and photojournaled our journey on my blog (and a bit on Facebook too).

You may not know that I have also been overseeing the care of my brother who has significant medical needs, including a form of short-term memory loss called vascular dementia, due in part to unchecked diabetes.

Having both a mother and a brother with dementia weighs on me. Add a grandparent from each side of my family to the equation and every forgetful moment takes me to the edge of tears every time I forget something more significant than where I left my car keys.

"Caregiving is a constant learning experience."

Because dementia has struck so close to home, I have diligently sought to educate myself about the subject and have made it my goal to share with anyone who is interested any knowledge I glean or resources I discover.

I honestly think I have read nearly every book ever written for dementia caregivers. This book is my personal favorite.

If you check my Google activity log, you’ll know why the ads that pop up on my Facebook account relate to items specific to dementia care. I belong to two Facebook groups for caregivers. I even have a Pinterest board related to Alzheimer’s. I listen to podcasts and follow the blogs and Instagram feeds of others who write or photo-journal about Alzheimer’s and caregiving. I belong to a caregiver support group sponsored by Agrace, the hospice that helped take care of my mom in her final year of life. I have often surfed YouTube channels in search of information related to caring for someone with dementia.

Today I would like to share information from the YouTube channel of one of my favorite medical experts, Dr. Natali Edmonds, founder of a dementia support community called Careblazers. In this video, Dr. Natali discusses the various stages of dementia and the three most common tools for measuring where a loved one with dementia (LOWD) is in the course of their dementia decline. In my opinion, it’s the best explanation you will ever get in 13 minutes and 24 seconds.

If you are caring for a loved one with any type of dementia, I highly recommend subscribing to the Careblazer YouTube channel. Dr. Natali posts informative, compassionate, bite-size videos on most any subject a caregiver might encounter on their caregiving journey.

5 Thoughtful Gift Ideas for Someone with Alzheimer’s

Photo by Pixabay on Pexels.com

Last month we celebrated my grandson George’s birthday. I cannot believe my youngest grandchild is eight years old already. Like many 8-year-old boys, he’s into all things Legos and Minecraft. This year he asked me to make his cake and surprised me when he went a little retro in his decorating request. Pac-Man!

When it comes to birthdays, I am so very thankful that my daughter helps her kids create Amazon gift lists. They make shopping for my loved ones so much easier. A “click” or two and the shopping is done and I can be reasonably sure that I am purchasing something my grandchild really wants and will appreciate.

But shopping for a loved one with Alzheimer’s (or any type of short-term memory loss) can be a little tricky. What they once enjoyed may now hold no meaning at all, or may actually cause agitation. My mom had Alzheimer’s. It took a little bit of experimentation to find out what she liked, but I learned things along the way and hope my experience will be helpful to someone else. Here are a few of the gift ideas my mom enjoyed:

Something cuddly soft and warm (and very washable) – like a new blanket, a pretty sweater, or a beautiful shawl. In my experience with my momma, being cold was always a problem. I could be fanning my sweaty self and my sweet momma would be in the same room looking for something to wrap herself in because she was cold. We bought her several plush bed jackets and soft sweaters with pockets. Momma was not alone, as being perpetually cold was a problem with many of her friends in her assisted living memory care. I would suggest something in a favorite color, but nothing with a busy pattern; I learned the hard way that patterns can turn into terrifying objects when a loved one is in a stage where hallucinations and delusions are common (you can read about one such experience here).

This one is handmade and belonged to her assisted living community, but mom loved it.

The quilt hanging on the railing in the photo below was a gift for my brother sent by his friend Cheri and the church quilting group to which she belonged. It was such a nice gift and sweet gesture of love and care. He may not remember who gave it to him, but he will appreciate its warmth in the coming winter months.

My brother, enjoying a cup of coffee and a little fresh air on his nursing facility’s front porch.

Coffee (or another favorite beverage). Mom’s eyes lit up when I brought her sweet tea or a Diet Coke. My brother always enjoys a good cup of coffee (with lots of half & half) whenever I visit him.

This size photo book was perfect for my mom to tuck in her purse to enjoy discovering later.

A photo book. Photo books are a perfect icebreaker when visiting a loved one who no longer remembers your name or connection. Just paging through a photo book takes away some of the awkwardness of memory loss, giving you something to enjoy together. In the photo above, my granddaughter Violet is spending time with her great-grandma going through a photo book that features Violet’s family. In addition to your corner drugstore, there are any number of on-line sites where photo books can be created.

A favorite treat – as Alzheimer’s progressed, mom developed quite a sweet tooth and loved it when I brought a cookie or a donut. Please don’t be too worried about nutrition; it’s all about your loved ones favorite things and bringing them joy at this stage in life. I would occasionally put a cookie in a ziplock bag, then tuck it in her purse for her to discover later. Your loved one may not realize it is from you, but trust me when I say your surprise will bring a bright spot to their day.

A birdhouse. Many residents have birdfeeders, which are quite enjoyable; however, they require someone willing to keep them clean and filled with seed, which isn’t always practical. Birdhouses are quite lovely to look at and don’t require a lot of upkeep. Seeing bird families coming and going is sure to bring a smile.

What are your gift suggestions? Please share them in the comments.

Dementia-friendly Activities

Helping a loved one with dementia feel content is sometimes a difficult task. I’m by no means an expert on the subject, but thought I’d share a few photos depicting several ideas that we tried.

There came a time when caring for my sweet momma in our home was no longer best – for her or for me. God knew what we both needed and provided a wonderful place for her to live a 10-minute drive from our home. Momma lived the last year of her life here on earth as a resident at BeeHive Homes of Oregon – an amazing assisted living memory care community. The amazing staff did so much to help her be as content and happy as possible. Let me share just a few photos of those wonderful activities and opportunities she was privileged to take part in.

Group Activities to Encourage Movement

Momma loved her snacks! BeeHive always had something she loved.

Though her deafness was sometimes a barrier to fully enjoying the music, Momma and the other residents had many rich opportunities to hear and participate in a variety of musical forms.

This lovely harpist was a regular and well-loved visitor to BeeHive. I do believe I saw “rapture” on the faces of some of the residents as they listened to her play – some of them singing along.

BeeHive is blessed with visits from many musical groups and choirs
Momma obviously enjoyed the accordian – it was certainly easy for her to hear. Just look at the joy on her face!

Several dance troupes brought their lively performances to BeeHive. What a sweet treat!

I’m thankful for the churches who faithfully held services for the residents. This photo is of mom and her friend Roy listening to one of the pastors.

So many creative people and groups shared their time with the residents helping them make a variety of lovely crafts.

Momma gets a little crafting help and encouragement from a sweet volunteer.
The intergenerational activities were SO meaningful. The local school sent students over every week to read to the residents. I just love seeing this photo of momma and her armful of babies listening to this young boy read aloud.

Please, let me take just a moment to speak to those of you who are facing the decision of whether or not you should place your loved one in a care facility. Looking back on my caregiving experience, I am so very glad that I spent time with my momma helping her in any way that I could during the last few years of her life. When the time came for her to move out of my home, it was a very difficult decision. My body was telling me it was time. My emotions were telling me it was time. My husband was telling me it was time. Yet, I felt a little like I was giving up. However, I now realize that if I had insisted upon keeping my momma home with me until the very end, she would have missed out on so many wonderful opportunities and friendships.

Momma and Carol didn’t know one another’s names, but they were nonetheless sweet friends. I’m so glad they were able to be there for each other.

May God bless you who are caring for a loved one or friend with memory challenges. May you be blessed with creativity for your very long caregiving days, strength and patience for the long and sleepless nights, and wisdom and grace for each decision you make on your journey of love and care.

Five Helpful Purchases for the Alzheimer’s Caregiver

I’m on the other side of caregiving now and am looking back on that experience and wanting to share a few of the most helpful purchases my husband and I made to assist us as we provided care for my mother.

  1. Mattress Protection and plenty of bedding – nearly every person who struggles with memory loss will come to the point where incontinence is a fact of life. One of the best purchases I made was this mattress cover. We had a hospital bed, so purchased a Twin XL. This particular cover actually was waterproof and saved our mattress from certain ruin over and over again. It completely covered the mattress — trust me, this is important. I only needed to wipe it down with a disinfectant spray, but it also washed up nicely in the washing machine on warm. I would give it a tumble drying on air-dry with several dry towels romping around in the dryer with it. We had purchased a second-hand hospital bed and it fit that mattress very well. One of the nicest things about this cover was that it was quiet–no plastic crinkling sounds when moving the bed position, or just tossing and turning a bit at night.
The very best mattress cover we tried. It’s worth your money to purchase two so that you have an extra for those nights when the accident is …ummm…really messy.

2. An Alzheimer’s friendly clock. There are many clocks available for purchase, but I can only begin to tell you how helpful this clock was – especially in the early and middle stages of dementia. We bought two. One for mom’s bedroom and one to keep in the kitchen near her spot at the table. There comes a time in the Alzheimer’s journey where the ability to measure time is lost. You can read my post highlighting the benefits of this clock in my previous post, “When Time Stands Still,” which you can find here. To be honest, now that we’re retired and not marking time with daily routines, hubby and I reference this clock ourselves when we’re having a “what day is it anyway?” moment of our own.

3. These waterproof pads. Yes, disposable ones are nice, especially when your loved one is sick and having bouts of diarrhea. However, these are wonderful for everyday use. I recommend you purchase the largest size so as to cover as much of the bed as possible. More often than not, whatever accident happens will be caught on this pad, which will save you changing all of the sheets and blankets in the wee hours of the morning. These pads will also come in quite handy if your loved one likes to sit in a recliner or other upholstered chair.

Don’t worry…they come in colors other than pink

4. A wireless security camera. I know there are a lot of camera options out there these days. This D-Link camera did a great job of helping us see mom when she would get up at night – its night vision and ability to pan and tilt remotely was so helpful. This camera helped me in the earlier stages when she was living on her own and I just wanted to check-in and make sure she was okay. In later stages when she needed to live with us, it picked up on her motions at night alerting me to any needs she might have for my help or intervention.

D-Link Indoor Full HD WiFi Security Camera, 2 Way Audio, Pan Tilt Zoom 1080P, Motion Detection, Night Vision, MicroSD & Cloud Recording, Works with Alexa and Google Assistant (DCS-8525LH-US)

5. And just for fun, we bought this colored pencil set and plenty of adult coloring books. My mom just loved them when she was in the middle stages and earlier part of late-stage dementia. Not only did she enjoy coloring, but she also enjoyed sorting the pencils into color groupings. The zippered case was nice too…it was amazing what all she could squirrel away in there along with her pencils.

Interesting thing to note: as the disease progressed, Momma gravitated toward using only green and yellow in her coloring. This meant that over time we bought various colored pencils sets to replace the greens and yellows and now have LOTS of colored pencils in every color but green or yellow.

In Search of Charlotte’s Bathroom

Momma has had trouble for a number of years now finding the bathroom. Even the last year or so that she lived in her own home (since 1962), it was often “invisible” even though it was located right across the hall from her bedroom. She had a little better success finding the necessary-room when we moved into her senior apartment, but was still perplexed in finding it if she happened to get up on the side of the bed that was not facing her bathroom. With her back to the door, she could not see the bathroom, so it stood to reason that it just didn’t exist.

Later on, when we moved Momma in with us, our tiny half-bath became her bathroom. Even though she passed it oodles of times per day in her trek between the bedroom and kitchen, its location still eluded her. We came up with a very helpful solution by placing a sign above the bathroom door which could be read no matter whether she was seated in the kitchen at her usual spot at the table, or seated on the edge of her bed. [I wrote about that sign here.]

Momma now has a beautiful ensuite bathroom and shower combination at BeeHive, her home over the past several months. Even though her bathroom is just steps away from her bed, she oftentimes still does not “see” it. It’s understandable that she might be confused because the toilet itself is tucked away in the corner and all she can really see from her vantage point on the other side of the door is the walk-in shower and sink. So, I decided to try painting another sign that she could read from just about anywhere in her bedroom.

Wayne cut an appropriate length of board, primed it for me, then put some little hangers on it. I got out my paintbrushes and acrylic paints and had a little fun decorating a “Charlotte’s Bathroom” sign to hang over her bathroom door. I borrowed a ladder from the staff at her assisted living and hung it up for Momma just after lunch today. Mom sat on her bed watching me. As I “tap-tap-tapped” with my little pink hammer driving in the first nail, she read the sign over and over again. “Charlotte’s Bathroom.” She said it was a pretty sign, so I told her that I made it especially for her and was glad she liked it. She thanked me for making it for her and again read the sign as I reached for the second nail.

As I was pounding the second nail into the wall, Momma made me laugh when she said (with great urgency), “Now, where’s the bathroom?”

Well…I tried.

“I Wish I Could Help”

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.

Tuesday’s Caregiving Tip: Remove the Obstacles

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.

Read on if you’re game. Continue reading “Tuesday’s Caregiving Tip: Remove the Obstacles”

Tuesday Caregiver Tip: The Christmas Letter

It’s a dilemma you might face as a caregiver. The one you’re caring for customarily sent out Christmas cards. How do you help them now when they can barely sign their name? Continue reading “Tuesday Caregiver Tip: The Christmas Letter”

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 Caregiver Tip: Busy Mind

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.

Handmade coloring cards Momma receives each week from her friend (and ours) Suzy. Each card has a special Bible verse printed within. These special cards are treasured and carried around at all times in Momma’s purse.

Thornton’s Art Supply Premier Premium 150-Piece Artist Pencil Colored Pencil Drawing Sketching Set with Zippered Black Canvas Pencil Case

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.

The church reminds her of the one where she was married in Anmoore, WV. Working this favorite 100-piece puzzle evokes memories and stories of her own wedding day. We put this one together several times a week – each time to her as if it were the first.

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.

My daughter captured this photo of her beloved grandma being too busy working a puzzle to even put her sandwich down between bites.

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.

I am thankful Mom can still read. On good days, she enjoys paging through one of her old study Bibles and re-reading notes she has written in the margins. and verses she has marked.

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!