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.

Falling for Dolly

Momma rested comfortably after Vivian and Jess left, so I decided to go home for a bit that evening to have dinner with Wayne and repack my bag. I knew in my heart that I would be staying with mom until the Lord called her home, so stuffed my backpack with a week’s worth of clean clothing, my Bible, a book, and a few movies to watch. I was just getting in the car to make the 12-minute drive back to BeeHive when I got a call from Kate, one of her sweet caregivers, who was calling to let me know that, weak as mom was, she had somehow managed to get herself out of bed and had fallen once again.

When I arrived a few minutes later, mom was back in bed and resting comfortably. The bump on her forehead from a previous fall had been in the healing stages, but now looked fresh again. Momma was chatty, but more difficult to understand. I did manage to cipher at one point that she was talking about her baby. Dolly was seated across the room in a chair, rather than in her customary spot in bed with her. It was then that I surmised Mom had been attempting to get out of bed earlier so that she could bring her baby to bed with her, but had fallen as a result. I placed Dolly in Momma’s arms and she patted her and spoke soothing words to her for quite some time.

I shared my theory concerning why mom had tried so hard to get out of bed with the staff. We all agreed that Dolly was very real in momma’s mind and that we should make sure Dolly was always in bed where Momma could see her.

I always loved watching my sweet mom tenderly caring for her beloved Dolly (and other dolls and stuffed animals), so I took a little video of Momma interacting with her Dolly that evening. When I would watch her care for Dolly, it seemed as though I had a glimpse of what my mother was like when I was a baby.

I will always treasure this sweet and special memory of Momma and Dolly.

The Hidden Grace of Social Distancing

I’m a familiar face at Oregon Manor Skilled Nursing Facility in Oregon, WI. Normally, I’m in and out of there several times a week, transporting my brother Brad to or from somewhere or another, or just stopping by to bring him a smile and a cup of coffee (and a donut, if he’s lucky).

Things are a bit different now. Now I can’t go in at all.

On Monday, I rang the doorbell to the skilled nursing facility and then waited on their front porch. Tom, the facility’s administrator answered. I told him I was there to pick up Brad for an appointment at the VA. Tom went to get Brad from his room and then delivered Brad and the necessary paperwork with his medical information to me on the front porch. Tom apologized for being unable to let me in, but I understood; it was for the safety of everyone, myself included.

Even purchasing a cup of coffee for my brother was entirely different, somewhat strange experience.

I usually stop at the Kwik Trip just down the road from where Brad lives and pop in to buy him a cup of coffee to drink on our way to the hospital. Brad likes their coffee, so it’s a treat for him. Today I couldn’t pour him a cup of coffee and fix it the way he liked it because they had suspended all of their self-serve food and beverages. No worries, though. Thankfully, an employee, donned in gloves, poured Brad’s Kona dark into the extra-large cup, then added half & half until I said “when” – he likes a LOT of half & half, so “when” took awhile.

Our route takes us through the UW-Madison campus, normally teaming with student activity. Not this time. No students on bikes. No pedestrian traffic. Businesses that cater to student customers seemed forlorn and bereft of customers – some looked closed. Definitely an easier commute, but sad at the same time.

We needed to answer more than the usual screening questions at the VA’s parking garage, which seemed cavernously empty. In stark contrast to my usual squeal of delight when I actually am able to find a handicap parking spot (with my brother giving me the amused side-eye), we were both in wide-eyed wonder that we had our pick of ALL the prime handicap spots today. In fact, ANY spot would have been large enough to maneuver my brother in and out of the car with his wheelchair. It was like a ghost-town.

The procedures for gaining access to the hospital changed too, so as to minimize the risk of infection. There was a designated entrance with closer scrutiny and screening, and explicit directions to use an entirely different designated exit to minimize contact. There was no wait for an elevator (although there was one man on the elevator who protested that we got on it with him); it’s really hard to practice social distancing when you’re in an elevator and pushing a wheelchair.

Checking into the podiatry clinic was different too. A line of blue tape on the carpeting masked off a safe distance from the clinic’s reception desk. Brad and I had the pick of ALL the spots in the empty waiting room in the Lighthouse Clinic’s waiting room, where we normally have to find a spot within ear-shot in a nearby hallway. Very few patients are being seen, but they wanted my brother to come in because he is at great risk for bone infection and they are concerned about the possibility of him losing his big toe. I’d show you a picture, but trust me, you don’t want to see it.

Working with a skeleton crew in their clinic, the doctor himself came out to call Brad back to an examination room. Normally dressed in standard issue scrubs, today he was wearing a mask and had a hospital gown over his scrubs; the gown wasn’t the usual disposable gown made of blue paper, rather the cloth type one wears if they are an in-patient in the hospital — you know, the ones that tie in the back and leave your backside exposed. He carefully examined Brad’s toe, emphasizing how important it was that we get this problem under control in order to avoid amputation. Brad routinely refuses care in his nursing home, so I’m hoping that this frank discussion put a little more cooperation in him. We’ll see.

In no time, we were headed back to Oregon Manor. Arriving at the same porch where I picked Brad up, we rang the doorbell and reversed the procedure. I thanked Tom and Brad’s nurse for all they’re doing to keep residents safe and healthy, assured them of my prayers for wisdom and protection, then headed home.

It’s a beautiful spring day and it was late-morning, so I decided to make McKee Farms Park my destination on my way home. The luscious fresh air is still a little nippy, so I buttoned up my jean jacket and headed to the paved walking path. It’s my custom to pray as I walk. Today I thanked God for the people who, at risk of their own health and welfare, take care of my brother and my mother. Walking, praying, and enjoying the beauty, I couldn’t help but notice how social distancing is evident even here at the park with people keeping the recommended 6 feet of distance between themselves. The playground was eerily quiet, with no children enjoying it, even though they are all out of school.

But you know what? I noticed something else at the park too – something nice. Families. They weren’t hanging out at the playground with the kids running around and parents seated on benches looking at their cell phones. Moms, dads and kids were out walking or riding their bikes together. They were talking, smiling and laughing together. One dad was out there teaching his little one how to ride a bike. Another dad was helping his kids fly kites while mom pulled a little picnic blanket and snack out of her backpack for them. One family was taking a walk ahead of me on the path, and the kids were having fun practicing what we’ve come to know as ‘social distancing’ as they held onto the ends of 6′ ropes.

As I continued my little prayer walk, I thanked God for showing me another hidden grace of this difficult time when we’re being advised to shelter at home and practice social distancing: families truly enjoying this slower pace of life together.

I would love to hear from you! Please share in the comment section below one of the “hidden graces” you have noticed during this crazy time of responding to the COVID-19 crisis.

The Decline: Falls & Playing on the Floor

My poor mom! She’s got quite a few nasty facial bruises and abrasions sustained in recent falls. Let me be quick to say that my mom receives EXCELLENT care in her abode at BeeHive. None of the falls she has experienced have anything to do with her not being closely monitored. The staff does their best to keep an eye on her, and so do I.

Case in point: earlier this week I was just a few feet away from her when she suddenly decided she was going to attempt to transfer herself from her wheelchair to a nearby recliner. She ended up unceremoniously dumping herself onto the floor in the process. Thankfully, she wasn’t injured this time, but that just demonstrates how quick and stealth-like she can be when she sets her mind to doing something.

Much thought and effort goes into “how to keep Charlotte safe” at BeeHive. I surely appreciate the staff’s diligence, their willingness to keep tweaking medications, schedules, and processes in order to create an environment where she is as safe as possible. I make every effort to work with them and support them in their endeavors, and her team of caregivers is always more than willing to give my ideas a try.

I know some of the readers of my blog may be experiencing similar difficulties with their loved ones, so thought I’d share a few things we have tried which seem to help.

A floor alarm is in use by her bed, which helps the staff know when her feet hit the floor. She also has a wheelchair alarm which will alert them if she lifts her weight off of the chair. Unfortunately, alarms only let you know that the loved one is already in motion and caregivers may not be near enough to respond before the incident occurs. The greatest strength of an alarm is that it brings help sooner than later.

Learning her habits and “reading” her signals is a very important part of anticipating her risky behavior. For instance, they know that mom can no longer reliably sense when she has to use a toilet, and her ability to voice a need to “go” varies greatly daily. However, through observing mom and recording her habits, they know that it is wise to wait about 45 minutes after lunch when she’s getting a bit sleepy to take her to use the restroom, and then put her in bed for an afternoon nap.

Mom likes to tootle around in her wheelchair, but can get into a bit of trouble as she explores the rooms of other residents and tries to get in their beds or chairs. Restraints aren’t allowed, but her caregivers have learned that mom will stay put and sometimes take a quick nap if she is placed in one of their comfy recliners (and reclined). She also likes to sleep on one of the roomy couches; if she seems sleepy and is trying to transfer herself to a couch, they help her get comfy by bringing her a blanket and pillow. Dolly sometimes joins her for a little snooze.

Mom’s risk for falls is complicated by the fact that she seems to enjoy being on the floor. Sometimes she is playing on the floor like a small child, inspecting the wheels on her wheelchair, or scootching around on her bum in a crab-like crawl (see the sassy video below). Other times she just wants to sleep on the floor. It’s HOW she gets down onto the floor that is risky and causing her injuries (that and falling asleep in her wheelchair and then toppling out). If the staff sees her attempting to get down on the floor, they have learned she will become agitated if they keep picking her up and putting her in her chair or bed. It truly is best to help her get down there safely and let her hangout down there until it’s time for the next meal or activity.

As you can imagine, the sight of a frail-looking, elderly sweetheart crawling around on the floor is a bit disturbing to visiting family and guests who sometimes assume that the staff is just not paying attention.

To keep the staff safe from undue criticism, my granddaughter Mia helped me decorate a few little fabric signs for her back which help communicate that she is safe and happy. The staff pins the little signs to her sweater so she can play to her hearts content and everyone knows she’s okay.

Mom’s ability to communicate her needs is definitely on a course of swift decline. I know I say this a lot, but I am incredibly grateful for those who lovingly care for my mom. I couldn’t possibly meet mom’s needs as well and keep her safe if I were caring for her on my own. How wonderful that, through BeeHive Homes of Oregon, Agrace Hospice, and Bluestone Physicians Group, I have doctors, nurses, nursing assistants, personal care workers, a cook, a pharmacist, a social worker, and an activity director who ALL care about my mom so very much.

Mom is safe. I am blessed.

“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.

This Sweet Treat

I sometimes leave a little treat on the kitchen countertop near mom’s chair where she can enjoy ‘discovering’ the snack. Being able to help herself to something yummy gives her a much-needed sense of independence. Very important when, one by one, here a little, there a little, her ability to exercise independent decision-making is being stripped away.

Momma has long since lost the ability to cook; a bit sad since she was such a great cook.  Using an oven or cooking something on the stove-top would be dangerous. Truth is, she can no longer even use a microwave to fix herself a cup of tea or rewarm something she might find in the fridge. Only a few years ago, this amazing woman would cook big meals for her family and friends. Today, Alzheimer’s has left her completely dependent upon us to make sure she has the food she needs for daily sustenance.

I have discovered one secret to being a good caregiver. Wherever possible restore the dignity of making a choice. In this time of life when everyone is making important decisions on your behalf, being able to make even a small decision on your own is vitally important.

My Facebook friends may remember this story. One day, not long ago, I left a cookie for my mom on a little white plate. Mom spied the treat on the countertop and gingerly carried it to her spot at the kitchen table. Everything in me wanted to help her carry it to the table. I let her handle this on her own, but stood nearby and at the ready should she need my help. Mom then plopped herself into her chair at the table. Then, in a sweet, melt-my-heart moment, I watched as she held the cookie between the fingertips of her prayerfully clasped hands, closed her eyes and quietly prayed,

“Thank you Lord for this cookie, this sweet treat. And thank you for this nice place to be. In Jesus name, Amen.”

Alzheimer’s and Money Worries

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

Sweet and Sad Moments

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

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

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

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

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

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

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