Tuesday’s Caregiving Tip: Keep a journal of those special moments with your loved one.
To my fellow caregiving friends who are still in the hustle and bustle of caring for a loved one with dementia, be sure to take time to write down those special moments. I wish I had kept an actual chronological handwritten journal, but am so glad I blogged and took photos…and posted cute stuff on Facebook.
I moved in with mom for a period of about 9 months. It seemed long and tedious in the midst of it, but just a tiny blip on the radar of life in retrospect. I’m glad I posted this fun memory on Facebook and hope it will bring a smile to someone’s face today.
This is the third in a series of posts inspired by an article from Alzheimer’s TODAY called Tiny Gifts That Are TREMENDOUS, where Mary Kay Baum shared a helpful A-to-Z list of caregiving suggestions Thus far, I have given you my spin on A-B-C and my thoughts as a caregiver regarding D-E. Let me invite you to join me this week for F and G as I share how these excellent tips have played out in my own caregiving journey.
Thus far, I have given you my spin on A-B-C and my thoughts as a caregiver regarding D-E. Let me invite you to join me this week for F and G as I share how these excellent tips have played out in my own caregiving journey. [Click here to read the original article].
Fear not if I take a break from commotion.
We were celebrating a birthday at our house. Mom sat at her place at the table and enjoyed watching the festivity and seeing a few of her great-grandchildren. Though she didn’t contribute much to the conversation, my heart was warmed by her smile as she watched the birthday boy bask in the attention. After the candles were blown out and the cake was served, mom quietly stood up with the help of her walker and then scootched down the hall the short distance to her room. She was done with company. And that was okay.
On a previous occasion, when mom was living in a senior apartment, the residents were hosting Trick-or-Treat for the neighborhood kiddos. During our city’s Trick-or-Treat hours the residents gathered in their activity room and waited for the steady stream of costumed guests. I thought mom would enjoy seeing all of the kids and handing out candy with all of the other seniors in her building. She stayed for a few minutes, then went back to her apartment; it was just too much for her. I had invited a few kids from church to come to the event. When they arrived, I invited them to visit mom in her apartment. Mom enjoyed the smaller gathering so much more.
During this phase of her journey with Alzheimer’s it became my mission to keep her engaged by inviting people to see her. One or two people would join us for lunch; another day someone might come over to say hi and work a puzzle or engage with her by sitting with her at the table coloring. One family from church brought us pizza for supper one evening, then stayed for a bit so the girls could sort through a jar of buttons with mom.
Go with me and others on quiet nature walks.
Truth is, in the later stages of dementia, most days it was nearly impossible to get my mother outside of the house for a little fresh air. It was a treat when it happened.
If the weather was nice and I could coax mom outside, I’d get her seated in a wheelchair and push her to our neighborhood park.
She enjoyed watching the children play at the splash park, seeing dogs being walked along the pathways, and would occasionally engage a perfect stranger in conversation.
We didn’t stay long, as the charm of our outdoor excursion would soon be replaced by the fear of being able to find our way home. By the time I got her back in the house, she had already forgotten our little trip. Even though it was forgotten, the benefits of the fresh air and the infusion of joy would linger in her demeanor.
One day, out of the blue, mom wanted to “check the mail,” so I let her go outdoors with her walker. She enjoyed that little trek down to the curb and back.
Since she was in a good mood, dressed decently, and it was nearly dinner time, we decided to put her in the car and go for a drive to the nearest Culver’s for supper.
She thoroughly enjoyed every bit of it…especially the frozen custard.
Once my mom made the move to assisted living memory care, getting her out of the front door was even more rare. This photo shows one of those sweet occasions when her great-granddaughter Violet managed to get her outside to sit on a shaded patio.
As Alzheimer’s continued its relentless march claiming bits and pieces of my mom’s brain, it was evident that mom’s world was shrinking right along with her memory. All too soon there came a day when the world outside of Mom’s front door became too scary of a place for her to venture.
That was the day when “go with me” became “be with me.”
We call them caregivers. Some caregivers are paid to do the job (and I’m SO thankful for them), but most are not financially compensated.
They just care. And give.
I hope my second article will be an encouragement to caregivers. My little series is based upon an article from Alzheimer’s TODAY called Tiny Gifts That Are TREMENDOUS, where Mary Kay Baum shared a helpful A-to-Z list of caregiving suggestions [Click here to read the original article]. My caregiver friends, come along with me as I share how these tips played out in my own caregiving journey. Last week I gave you my spin on A-B-C; this week, I’ll share my thoughts regarding D-E.
Do mention your name, looking at me.
One day I was helping my mom look for her checkbook (a frequent activity in the mid-stages of Alzheimer’s). As I sifted through the contents of her purse, I pulled out a list of names. Taking a closer look, I could see that the names were those of some of her closest friends at church. Each name was written out several times, as if she were practicing, trying to cement the names in her mind. I could imagine my mom sitting in her Bible study trying so hard to recall the names of people she had known for years.
It was during this period of time that I realized just how much mom was struggling with the names of the people she knew and loved. In retrospect, it was probably the reason she began declining invitations to social events and had not been regular in her church attendance.
One way we tried to help my mom was to create laminated photo cards which listed the names of the people in the photo and how they were connected with mom. I would get that photo out for her when that individual came for a visit. It helped mom save face by prompting her with the visual cue she needed to remember the names of her guests. As her dementia progressed, she just liked carrying all of her laminated cards around in her purse and seemed to enjoy sorting them and reading the captions.
ENJOY quiet times with me like reading to me.
Reading to my mom was a bit tricky. She was pretty hard of hearing, but I’m so proud of my grandkids (her greats) who did their best to include their great-grandma by reading with her. My youngest grandson George was amazingly good at this. He knew how to put on his loud voice and would snuggle up to her and look at books with her whenever he would visit.
Mom had a special spot at our kitchen table. Whenever the great-grands would come, they would try to do something at the table. Sometimes she’d join in the fun, other times she would just watch.
I’m not going to lie. Having a front-row seat to the heartbreak associated with mom’s onset and advancement of dementia was a hard place to be, but I’m glad I had the opportunity to be a blessing to her during that time. My bank of memories is full to the brim with more special moments than difficulties.
As dementia progresses, the ability to interpret the words written on the page becomes more difficult. Since mom enjoyed coloring, we purchased adult coloring books with simple devotional thoughts and Bible messages so that mom could continue to read. Members of the family also created photo albums with brief descriptive captions–she truly enjoyed looking through those too. Those same photo albums gave less familiar friends and paid caregivers something to do with her too–a connection and something to talk about and enjoy together.
It is my hope and dream that by sharing my own experiences – the good, the bad, the ugly, the beautiful – someone else will be encouraged in their life as a caregiver. Sometimes, sharing just one caregiving idea will give another caregiver the hope that they can DO this hard thing.
For more helpful information about Alzheimer’s please visit:
The Alzheimer’s Foundation of America puts out a fine publication aimed at providing helpful information for those who love and care for others with Alzheimer’s disease and other types of dementia including vascular dementia (what my brother has), Lewy Body dementia, Parkinson’s, alcohol-induced dementia, and others. Their purpose is stated in this way:
Mission: To provide support, services and education to individuals, families and caregivers affected by Alzheimer’s disease and related dementias nationwide, and fund research for better treatment and a cure.
Alzheimer’s Foundation of America
If you’re a regular reader of my blog, you know I have a similar mission or purpose in writing. In addition to sharing the fun stuff in life that comes from my joy in barefoot gardening, grandkids, and following Christ, I have a deep desire to encourage those who are in the trenches of caring for a loved one or friend with Alzheimer’s. We call them caregivers. Some caregivers are paid to do the job (and I’m SO thankful for them), but most are not financially compensated.
They just care. And give.
Today, I’m sharing an article from Alzheimer’s TODAY which should be of great help to ALL caregivers. Tiny Gifts That Are TREMENDOUS is a thoughtfully written A-to-Z list of caregiving suggestions compiled by Mary Kay Baum of Time for Us Camp in Dodgeville, WI. [Click to access Alz.-Today-Vol.-15-No.-4-LR.pdf]
This article resonated with me. As I read each point the article made, I could think of several examples from my own caregiving journey with my mother. Over the next few weeks, with the permission of Alzheimer’s TODAY, I plan to share a few of the things I learned along the way. It is my hope and dream that by sharing my own experiences – the good, the bad, the ugly, the beautiful – someone else will be encouraged in their life as a caregiver. Sometimes, just one unexpected word of encouragement can help someone have the courage to keep going. Sometimes, sharing just one caregiving idea will give another caregiver the hope that they can DO this hard thing.
So, caregivers everywhere, come along with me as I share how these tips played out in my own caregiving journey. We’ll start with ABC.
APPROACH me from the front and avoid startling me.
Gracious, this is so important! Many people do not realize that as the brain deteriorates, the field of vision and the ability to interpret what is in that field of vision becomes increasingly limited. I learned early on to approach my mom slowly from the front. Swooping in from the side, or reaching around her from the back, even if it was just to give her a hug, would cause her to jump. When she was frightened, she was less likely to be cooperative and sometimes even became combative. When mom entered into assisted living, those who followed this guideline had greater success in encouraging her to take medications, get dressed, eat…whatever. Those who would approach from the side and hurriedly shove a cupful of meds or a spoonful of food into her mouth could almost count on resistance.
BEND DOWN or sit down near me if I am in a wheelchair.
Even if a loved one is not in a wheelchair, no one likes to be hovered over. In addition to being seated in a wheelchair, imagine trying to understand what is being communicated when your field of vision is so small. Before you read any further, please put your hands in front of you. Next, touch the tips of each thumb and each index finger (the pointer) together. Your hands have created a small circle. Now, put your eyes up to that circle and look through that small circle. That, my friend, is the field of vision through which the typical person afflicted with Alzheimer’s interprets their world. Let that little exercise, imperfect as it is, inform the way you approach your loved one.
My mom needed to see my smiling face, read my lips and facial expressions, and observe my actions. I would try to have lunch with her every day that she was in assisted living. Mom had a tendency to wander away from the table during meals. Having me there eating with her helped her stay at the table and gave her the visual and social cues she needed to eat.
CALL my name gently and with a smile.
I’m notorious for talking to my husband from the other room, or worse yet, as I’m walking away from him. It’s a bad habit – lazy on my part, and disrespectful, actually. Precious caregivers, we can NOT do that with those who have Alzheimer’s.
We need to practice the art of getting close and putting a gentle smile on our face as we speak to our loved ones. When I needed my mom’s attention, she needed to hear AND see me say her name. A smile made communication more pleasant for both of us. Mom could read frustration on my face even when she could not hear my voice well (she was profoundly hard of hearing). I could save both of us frustration by just remembering the ABC’s.
Approach her from the front
Bend down or sit near her (get my smiling face in her field of vision), and
Call her name gently.
For more helpful information about Alzheimer’s please visit:
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.
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.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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?”
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.