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.”
Today I’m linking up with the Five Minute Friday community, writing for five minutes on a given word prompt. This week’s word is OBSERVANT.
My eyes followed the two women as they pushed a cart together through our local Aldi – the younger woman guiding and steadying the older. There was something endearing and precious about the scene…and personally familiar.
Even though my eyes are growing weaker with age (cataracts are forming, I am told), my eyes have become more observant in their ability to pick out the caregivers I encounter in everyday life. I believe this deeper level of awareness is one of the hidden graces of my personal journey in being an Alzheimer’s caregiver for my sweet mom.
Because I have been there, I see this loving daughter guarding her mother’s dignity as she slowly guides her through the store. My eyes see the mask of confusion in her momma’s eyes, and see the gentle way the daughter helps her mom choose groceries to put in their cart.
Because I have been there, my eyes see the caregiver in the waiting room of the dental office trying to convince their forgetful loved one that they just went to the bathroom and didn’t need to go again. I can show empathy because I remember that taking a loved one to the bathroom is not a 5-minute job.
Because I have been there, I see the caregiver in the parking lot trying to help their agitated and combative loved one buckle their seatbelt. I see and know the sheer exhaustion of it all.
My Alzheimer’s-aware eyes see the frazzled caregiver trying to go through the Culver’s drive-through as her daddy repeatedly unbuckles his seatbelt and tries to exit the vehicle. I see her anxious eyes in her rearview mirror as she waits to place their order. Tears are pooling there, ready to spill because she feels hopeless and alone.
May my eyes never be blinded to the needs of caregivers God places in my path. I pray God will help me see each caregiver through His loving and compassionate eyes.
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.
God gave me the honor and privilege of taking care of my mother in the years that her mind waged war with Alzheimer’s. I am thankful that her brave battle with memory loss and frailty of body is over–the victory won as her affliction gave way to the ultimate healing when Jesus took her home to heaven.
My regrets are few, but if I could have a do-over of one caregiving thing, I think I would listen more carefully to the stories she told about her childhood. In my do-over, I would sit next to her more often looking through old photos, paying attention to the memories she shared. I would take care to write down all of the memories the photos coaxed from the places in her mind where the old stories still lingered.
With the help of my daughter, I did create a memory album for her, but it would have been nice had I started on the album sooner, capturing those stories for her to read and re-read as her memories slowly faded away.
While I cannot roll back the hands of time, I do find joy in knowing she is free from the bondage of memory loss and frailty of body. I find hope in knowing that those precious moments we did share are only a glimmer of the immeasurable time we will share together in eternity.
This post was written for Five Minute Friday.One word. Five minutes to write about it.
Today’s word: COULD
Another post in my “Rewind” series. This post originally appeared on October 23, 2016 as a Facebook note in my pre-blogging days. As I journeyed alongside mom with her diagnosis of Alzheimer’s, I learned through her experience many things about the affect this disease had on her world. As my mother’s caregiver, I have leaned heavily on the experiences of those who have traveled this road ahead of me. In sharing my experience, it is my hope and prayer that someone else will be helped and encouraged.
Even though Momma lives in a little one-bedroom apartment, many days she has a hard time remembering where her bedroom is located. A few minutes ago, I overheard her talking to herself saying, “Now, where is my bed?” Groaning with each step taken toward bed, I could hear my sweet mother then exclaim as she entered her room, “Oh, there you are! I can never remember where you are.”
I’ve been staying overnight at Mom’s house since September 11th. That was the night when mom had a severe separation from reality, scary hallucinations, and I had the realization that it was no longer safe or wise to leave her in her apartment alone. Sadly, she was so afraid to stay in her room. Every time I would get comfy and start drifting off to sleep on her couch, she’d come in the living room, flip on the light, then stand in front of the couch asking me if I was awake. I would get up, gently guide her back to the bedroom, do the room search (looking for the intruders she was so sure were there) and I would try to reassure her that everything was okay.
I noticed that even during naps taken during daylight, mom wouldn’t sleep under her quilt. I would often find it pushed to the corner of the bed or on the floor. On the third night of no sleep, Mom told me that there were “faces swimming” on her bedspread. She was clearly disturbed by its presence. So, I replaced the bedspread with an extra blanket and mom finally settled down enough to sleep for a few hours.
The next day, a very kind friend from church came to sit with mom so I could take my brother to a medical appointment. When I returned later that day, I related the story about the bedspread to her. She took one look at it and said, “Of course there are faces! Look here! See the eyes?” In all the years that the paisley bedspread had been covering my parents’ bed, I had never noticed that.
As I thought about my sweet friend’s observation, I recalled reading in several articles related to caring for individuals with Alzheimer’s that busy fabrics give some patients great anxiety and that it is helpful to use solid colors in clothing and decor choices. Even busy wallpaper patterns can take on frightening proportions that terrify the confused mind. With that information in mind, that very day, I stopped at my local Target and purchased a plain, simple white bedspread for her.
No more swimming faces – and every so often, I catch a heartwarming glimpse of mom gently fingering her new bedspread, running her hands across the soft fabric as she drifts off to a much more peaceful sleep.
My friend and I talked recently about palliative care and how it differed from hospice care. I recalled writing a little blog post about this subject, so decided to reblog it today. I hope that it helps my friend and anyone else who is approaching this stage in the care of their loved one. I praise God for leading me to Agrace and for the wonderful palliative and (later) hospice care my dear mom received.
As this mid-stage of Alzheimer’s drags on, Mom is sleeping quite a bit more, not only at night (which I appreciate), but during the day as well – sometimes skippinga meal in lieu of sleep. Unfortunately, her nighttime sleep doesn’t appear to be very restful, as she gets in and out of bed various times throughout the night – sometimes to use the restroom, other times to explore the contents of her purse or her dresser drawer, or watch the real or imaginary happenings going on inside our house or outside of her window.
We have also noticed she has been less content during her awake hours and is more easily agitated. She paces back and forth between her bed and her chair at the kitchen table, never quite settled in either place; never quite sure if she’s going to bed or getting up.
Back in 2014, making sure that mom had all her legal paperwork ducks in a row was one of the smartest investments we made in both time and money in preparation for the Alzheimer’s road ahead of us. Thankfully, mom and dad had a good foundation, having already met with their lawyer to get their house in order for the future as soon as my dad began having health struggles.
They had written their wills and had also established two essential (in my opinion) legal instruments:
Power of Attorney for finances and property
Healthcare Power of Attorney (state specific form)
If you do not have both power of attorney documents and your loved one is determined to no longer have the capacity to make their own decisions, “Guardianship of the Estate and Person” may be necessary. You will likely have to petition the Court to appoint a guardian to make the decisions not covered by the missing POA document. Knowing in advance who will be entrusted with these responsibilities is important, so be sure you have both.
Make your Power of Attorney for Finances and Property effective now so your agent can quickly handle financial matters. Your agent will need to sign a “Duties and Liabilities” form, but the agent can start helping you immediately. My husband was my mom’s POA for finances and, because that “effective now” box was checked, he could help my mom with her banking, put all of her bills on autopay (so she didn’t have to deal with the mail), take care of matters related to her investment accounts, talk to her banker, pension fund administrator, and insurance companies. He did not have to wait until she was declared incompetent.
In addition to the above essential documents, we found the following to be beneficial as well:
Make sure “special powers” are included in your POA document. In my state of Wisconsin, the standard form available for download does not include provisions for gifting or grant powers to your agent to amend trusts or beneficiary forms. Your attorney can help you create a “Special Durable Power of Attorney” with trust provisions. These powers can be very helpful when a person is trying to protect assets from long term care costs.
Consider creating a “special needs trust” as a place to shelter or reserve enough cash to be able to take care of things not covered by Medicaid. In our state it is called WISPACT. My brother lives in a nursing home. I am his POA for healthcare and my husband serves as his POA for finances. My brother had been unemployed for several years and had no savings and no income (too young for Medicare), and would quickly spend down a modest retirement account he had from a previous employer. With the “special powers,” Wayne established a WISPACT fund for him to set aside some of my brother’s retirement money prior to Medicaid spend-down. This is NOT a way to cheat the nursing home. For us, having this fund means we don’t have to dip deep into our own pockets to pay for things my brother needs that are not covered by Medicaid. For example, if my brother needs new blue jeans or a dental appointment, we go ahead and take care of that need, then submit either an invoice (e.g. for the car repairs) or receipts (e.g. for blue jeans) with a “request for distribution” to WISPACT. The expense will then be reviewed by the trust manager to ensure that the expense meets public benefit rules, and the bill is taken care of or we are reimbursed. The trust is irrevocable, meaning that no funds will be returned; when my brother dies, any funds left in that account go to the state.
Prepay funeral expenses – Mom and dad had already chosen and paid for their cemetery plot and, thankfully, she had shown me where the deed was located earlier in her disease process. My husband and I took care of pre-paying mom’s remaining funeral expenses based upon both her written notes as to her desires and a conversation we had with her in an earlier stage of Alzheimer’s. We have done similarly for my brother. He’s only 61, so could live much longer. Pre-paying his final expenses locks in today’s pricing.
A Caregiver Agreement – While mom was still able to make her own decisions, she expressed concern knowing that I may someday have to quit my job to take care of her. When we sat down with mom’s attorney, who specialized in elder law, he advised that we draw up a caregiver agreement – a legal contract which defined the dollar amount and the number of hours she would pay me in caring for her. Truth is, it became a 24/7 job, but our agreement made in advance made it possible for me to be paid as her family caregiver. Momma never got to the point of Medicaid spend down. If she had, her finances would have undergone the “5-year look back”, and having this legal agreement would help protect me financially.
Advanced Directive – None of us knows when we will take our last breath. How thankful I am that mom and I had that difficult conversation about end of life. And I am doubly thankful that she took care of creating an Advanced Directive. This helped me as her POA for healthcare (and caregiving daughter) make vital end of life care decisions on my mom’s behalf when she was no longer able to make those decisions herself.
I gave this post the title “Documents EVERYONE Should Have,” but should probably mention a bit of a caveat. An individual with Alzheimer’s will hide things that are important…including paperwork. In fact, they may throw them away. When my mom was in the mid stages of the disease, I decided it was time that I took her important papers home with me for safe-keeping (including that cemetery deed I mentioned above). However, the paperwork was still extremely important to my mom. I decided to make good photo copies of her originals and create a special binder of all that information for her. She absolutely loved it. She would spend hours paging through it, double-checking things, and would write her questions and thoughts on the margins. Knowing I had the originals, it was all good.
My dear readers, I think it’s about time to meet up for another cup of coffee and a chat. I thought we could talk about a question I am often asked.
What signs did you see that made you suspect that your mom was experiencing memory loss?
One place to start when gathering information about Alzheimer’s is the aptly named Alzheimer’s Association. You can click here for their Top 10 list of signs, but here’s my list of signs we noticed along the way:
Repeating stories multiple times at the dinner table.
Piles of stuff all over the house – very unusual since she was normally very tidy. The guest room bed was covered with several inches of mail and miscellaneous paperwork.
Finding everyday objects in odd places: her cane propped up against the fridge on her countertop; her purse in the fridge; keys under her pillow; toothpaste and toothbrush on top of her dresser; odd stuff in her purse…like banana peels wrapped like mummies.
Mummy-wrapped banana peel from Momma’s purse
Asking the same question over and over again.
A very messy calendar with lots of ‘White Out’ covering myriad mistakes (and her complaining that someone else was writing on her calendar).
Mom had always been a list-maker and would usually keep her lists in an organized notebook. Now, her lists were everywhere! You could find her notes to self on the backs of envelopes and snatches of paper; in multiple notesbooks or legal pads; in the margins of her calendar, etc.
Missed hair appointments. Her weekly hair appointment had been her habit for decades – it wasn’t like her to miss one.
Everyone loses their keys from time to time – believe me, I know! But the key hunt became a daily routine (sometimes several times a day) because she would hide them where they’d be safe.
Our solution to the hidden keys problem was to attach a “tile” which would allow us to use an app on our phones to find them. (Click here for info)
Ordering multiple sets of checkbooks; we counted five separate sets of checks for one account.
Hiding her checkbooks.
Unbalanced checkbooks and a dining room table littered with bank statements with notes of confusion written on each one.
Over-purchasing other items too: toilet paper, ballpoint pens, Kleenex boxes, dishwasher soap, spiral bound notebooks, and legal pads.
Repeating stories. Oh, I think I already said that.
Phone calls from neighbors reporting unusual behavior, including a concern over momma being outside ALL day in pretty much the same spot. And another with concerns about her driving.
A diminished desire to attend church or get together with her friends.
Hidden stashes of food – especially cookies and chips. We would also find partially eaten food here and there around the house. It made me nervous to think she might pick up spoiled food and begin eating it again.
Multiple cans of Coke begun, but not finished.
Unflushed toilets. Mom had always been VERY particular about remembering to flush toilets.
Inordinate amounts of junk mail.
She somehow got suckered into two vehicle protection plans and two sewer and waterline protection plans. Unfortunately, she never used them because she didn’t realize she had them.
She kept renewing her magazines, even if she had YEARS left on the subscriptions.
Losing large sums of cash. She once took $1,500 out of the bank for a vacation I was taking her on, but lost the money somewhere between the bank and home. We never did find that money, and her credit cards were in the same wallet.
Hiding valuables and claiming they were stolen.
Growing frustration with using a telephone or a once-familiar remote control.
When dining in a restaurant, she was no longer able to calculate a tip. Mom had always been an adventurous eater who was always game for trying a new restaurant. Whenever I would visit, she began going to the same restaurant and ordering the same thing each time. Or, without opening the menu, she would say, “I’ll have what she is having.”
Eating an entire carton of ice-cream in one sitting (we started buying it in pints and half-pints).
Most of these changes were subtle, but they began to add up. Somewhere in the middle of all of these changes, I knew in my heart it was time for me to make sure I invited myself to my mother’s next doctor’s appointment. I knew that he and I were going to have to become allies in my mom’s future care, so I stopped by her physician’s office and dropped off a copy of my power of attorney for healthcare paperwork so that they could be scanned into her record. I also wrote a letter to her primary care physician outlining my concerns. Now we could begin the process of me being in the loop related to care discussions and decisions. It was a hard step, but a necessary one.
Well, it looks like my cup of coffee is on empty and I did all the talking. Sorry about that. If I may ask, if someone you love has Alzheimer’s, what were some of the signs YOU noticed in your loved one?
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.