Signs Along the Alzheimer Way

Every night it’s the same question.

“Where’s my toothbrush?”

My answer is always the same.

“Your toothbrush is in the bathroom. Would you like me to get it ready for you?”

Her response is always the same.

“Yes, please, but where’s the bathroom?”

It’s especially sad because, for the most part, her world is two rooms of our house connected by a short hallway. She passes that bathroom multiple times a day, but still has to ask where it is.

Alzheimer’s makes it nearly impossible for her to store new information.

As many Alzheimer caregivers have observed, signs and labels can help. Whether it’s labels on cabinet doors and drawers, Post-It notes with names on photographs, how-to or directional signs, or little 3×5 card reminder notes on the bathroom mirror. These can be very helpful tools to help those who are memory challenged navigate their living space, especially in the earlier stages of the disease. In some cases, as with my mom, it can also help in the later stages.

There are four doors in that little hallway of Momma’s world. Doors can be very confusing to someone challenged in their ability to remember. Here’s a taste of how we tried to help bring sense and order to my mother’s world.

Door #1
Door #1 is a door leading to the basement stairway; we have a flip-lock on that door to keep her from taking an inadvertent middle of the night tumble. We also made a simple “Basement Playroom” label for the door, so she is less disturbed when her great-grandkids go down there to play.

Door #2
Door #2 leads to the attached garage. She has no need to be in there, but I created a little sign on a Post-It note that helps her identify this mystery door and satisfy her curiosity. The note on that door also tells her that her gardening tools are stored in there, as this answers one of her most often asked questions as to where all of her gardening tools are located.

Door #3
Door #3 is a storage closet with bi-fold doors which housed my brooms, vacuum cleaner, dustmops, and cleaning supplies on one half, and oversize kitchen-y stuff and cookbooks on the other half. The first half of that closet is now Momma’s clothes closet, and has been labeled “Charlotte’s Clothes”…which sometimes helps her find her stuff.

Door #4
Door #4 is the most often needed room; the bathroom we have fixed up as best we can to meet her mobility needs. To help Momma with her daily “where’s the bathroom” dilemma, I asked my wonderful friend Jo to paint a special order sign for me. She calls her business (and herself) the White Hen. Jo’s artistic specialty is painting lovely hand-lettered signs on reclaimed wood. Right now she is swamped with work painting cute signs for a growing restaurant that’s popping up all over the south. (If you ever find yourself having a delicious lunch at a Maple Street Biscuit Company, look around, you’ll see Jo’s handiwork all around you.) Busy as Jo has been, I’m grateful she took the time to bless me with this sign to place over the bathroom door.

Door #4
Whenever nature calls, Momma still asks, “Where’s the bathroom?” But, now, she’ll often look up at the sign and exclaim, “Oh, yes. There it is!”

As I’ve said before (and I’ll say again), it’s little things like this that help our loved ones find certainty in the very uncertain world of memory loss.

My Birthday Wish

In three days, I’ll be hitting one of those milestone birthdays that end in “0”.  I usually don’t have much on my birthday wishlist because, truth is, Wayne buys me whatever I want or need all year long (well, MOST of what I want). That’s the kind of guy he is. The best. He had recently bought me some new clothes, so I couldn’t think of anything else I really wanted, although I joked (kinda) that I wanted that half a million dollar house on a lake I found while surfing around on a real estate site. I did tell him (in all seriousness) that I would like a carrot cake for my birthday…so, he bought the ingredients to bake one for me. And a little grandkid time, of course! He’ll arrange for that, I’m sure.

I didn’t think I really needed anything else – until I visited my doctor for my annual checkup on Monday and realized that the sedentary life of caregiving was definitely taking its toll on my physical health. Most of my day is all about helping Momma with whatever she needs. My doctor suggested figuring out a way to incorporate more exercise into my day. A little me time. So, I asked for a gym membership for my birthday. Wayne checked into it for me the very next morning and granted my birthday wish.

Today was my first day hitting the gym – well, the first day in a LONG time. If I felt a twinge of guilt leaving Momma in Wayne’s care for a couple of hours, it was only momentary. This “me time” was wonderful. Slightly indulgent. Sweaty good. Just right.

Thanks, hon! Happy birthday to me.

 

When the Good Cook Can’t

Oh, what a year this has been. 

It’s hard for me to believe that a year ago, Momma was still living in her apartment on her own. Things changed rapidly after I wrote the post below. Momma lives with us now, but she still desires these “little sandwiches” over any other food I could possibly prepare for her. 

Facebook Journal Entry – Thursday, September 1, 2016

If you have ever been to a Spring Creek Church potluck fellowship, you probably could recognize my Momma’s dish at the end of the potluck. It was always empty.

Continue reading “When the Good Cook Can’t”

Setting the Caregiving Stage

I love to get my hands and feet dirty. Try as I might, I can’t seem to keep my shoes or gloves on when I garden. I guess I’m a tactile sort of person who enjoys the feeling of the warm earth squishing between my toes or sifting through my fingers. I try my best to make things grow, but know in my heart that very little of it is up to me.

Landscape designer Tish Treherne wrote an article for Sunset magazine that I really enjoyed. Tish wrote about how she designed her personal garden space around their gorgeous waterfront home. She likes to keep things slightly wild looking by “loosely layering unfussy perennials.” I love her garden design philosophy and enjoyed reading her description of how the plants she chose nestle into one another like puzzle pieces to create a seemingly effortless whole. 

I start planning my garden in the dead of Wisconsin’s winter when the first seed catalog comes in the mail. I get out my Sharpie marker and circle the flowers that capture my attention in the catalog pages and dream about where I’d put them in the garden. I get out my garden journal and jot down a few notes about what I’d like to plant, what I want to move, which plants I’d like to dig out, and what I’d like to purchase.

Whether shopping by catalog, or cruising the aisles of my favorite garden centers, I pay attention to the description of each plant, determining whether I have adequate space or light, or whether I’m in the right planting zone. My dear husband fully supports my need for dirt therapy, allowing me to add to my cart whatever little lovely attracts my eye.

Bug-infested Roses

Even with careful planning, planting and faithful watering, not all of my plantings survive. I have lost count of how many failed butterfly bush and clematis vines I have planted. Likewise, each tulip and daffodil bulb I plant in the fall holds the promise of a gorgeous bloom to follow in the spring, but not all of the bulbs I plant make it. Winters can be harsh, Springs too wet or too hot, cute little critters eat my plants and bulbs, disease strikes, insects munch away. Like Tish said in her wonderful article,

“You’re setting the stage as a designer, but you don’t have total control over what’s going to happen.”  ~Tish Treherne

I often draw parallels for life from my garden, and Tish’s philosophy holds true on that front as well. As I seek to take care of my mother’s increasing needs for care, I am just setting the stage as a designer. With the help of our family, my husband and I turned our dining room into a lovely bedroom for her. She has a special spot at our kitchen table where she can watch the birds and view the gardens. We make sure she has meals that are reasonably healthy, treats that make her life enjoyable. I make sure she receives appropriate medical and dental care, and that she is adequately clothed and groomed. We try our best to ensure her safety by putting up baby gates, installing handrails, building half-steps, using video monitoring systems while she sleeps, and making sure someone is with her 24-hours a day.

I can design a stage for her care, but I do not have total control over what’s going to happen. She may take a fall. She will undoubtedly get a urinary tract infection and have hallucinations which will keep her (and us) awake. If this disease takes the usual sad course, she will lose the ability to walk, talk, swallow, toilet herself, or perform even the most basic of personal care. I have absolutely no control over her future. I have no idea what even this day will bring forth. But God does, and He will give me wisdom for the next step of Momma’s life journey…and mine.

In the meanwhile, we will enjoy the flowers that survived, each moment of restful sleep, the birds playing in the fountain, the September breezes, porch-sittin’ days, visits from family and friends, knees that are sorta working today, and all the other beautiful daily benefits that come from God’s storehouse of blessings.

 

Honoring Your Parents: Nursing Home or Your Home?

Caring for my Momma in our home was a relatively easy decision, although the path toward making that decision was anything but as it took many twists and turns along the way. From the earliest days of traveling back and forth between Fitchburg and Milwaukee, to moving her closer to us, God has always been faithful in shedding light on the next step we need to take in our caregiving journey.

At first, we wanted to make an addition on our home for her – a first floor granny suite. Our local senior center’s social worker, along with our elder care law attorney, both agreed that this sort of building project was an appropriate use of her financial resources. Should we ever have to “spend down” her resources in order to satisfy Medicaid guidelines, they assured us that the expense would be allowable and justifiable. So, we did a little homework by getting an estimate for making an accessible one-bedroom plus a bath addition. To say we experienced “sticker shock” would be an understatement.

I was disappointed. Very disappointed. I cried. A lot.

IMG_2006Having nixed the expensive addition idea, we decided that keeping Momma in her nearby senior apartment under our close supervision was still the best option. With the assistance of family, an occasional friend, 11 hours of professional caregiving a week, and well-placed wi-fi cameras, we made it work. Then, about five months into this arrangement, a recurrent battle with a urinary tract infection resulted in hallucinations, alarming behavior, and plenty of evidence that Momma needed more care.

It seemed impossible to keep her at our house. Our bedrooms were on the second floor. We only had a small half-bath on the first floor. A sunken-living room became a fall hazard. The half-bath would barely be walker-assisted navigable. There were too many obstacles, so I moved in with her to help with daily needs.

moms room
Our dining room turned bedroom

Well, after 8 months of that, Momma took an ambulance ride to a nearby hospital and life changed once again. As I stayed with her in her hospital room, painfully aware that she couldn’t go back to her apartment, I prayerfully turned the various options over in my heart and mind. My husband was doing the same thing. When we sat down to chat about it, we realized we were on the same page. We were going to make room for her in our home. We would make it work by turning our dining room into a bedroom for her. You can read more about that here.

As I continue to blog and share my journey in caring for my mother, I am learning that I am not alone in making difficult decisions related to caring for an aging parent. I have a number of friends who are caring for one or both parents. Some have decided that their loved one would receive better care in a retirement home, assisted living, or skilled nursing facility. I support them in that decision, knowing it was reached prayerfully and with great deliberation.

As a daughter seeking to provide compassionate and God-honoring care for my mother in my home, I found the biblical insight of a podcast I listened to today to be very helpful. The realization that I may need to make a decision in the future that would mean my mother would no longer be cared for in our home becomes more intense with each day that passes. I thought I’d share the link to Desiring God Ministry’s “Ask Pastor John” series on the subject of “Retirement Homes and Caring for Aging Parents.”  The information he shared confirmed in my heart and mind that I am doing the right thing for the right purposes and, should her needs change, I will not be dishonoring my mom by placing her in a facility where she will receive appropriate care.

I encourage you to click on the link above to access the podcast, but let me leave you, dear reader, with a tiny bit that was especially encouraging to me.

Are we ready to make sacrifices for our parents? Or are we resentful that they are becoming a burden? That’s the real test. All of this may or may not mean that the parents come to live with us or near us. There are innumerable variables that make one situation right for one family and another situation right for another.

Life: Just a Few Handbreadths

As I take care of Momma, the familial aspect of Alzheimer’s disease sometimes scares me. That fear isn’t all bad, in that it helps me realize that it is true that my lifetime is just a “few handbreadths,” a “mere vapor” that will pass before I know it. What I do with my days really does matter. Continue reading “Life: Just a Few Handbreadths”

Friends Read Between the Lines

According to Facebook, I have 498 friends!

I will admit. I really enjoy Facebook. I love keeping in touch with friends – old and new – via this social media phenomenon. I find it outrageously amazing that I can connect with a few of my “besties” – keeping tabs on their kids and grandkids via anecdotal stories, posted photographs, and funny videos. So many of my friends now live several states away, so every post they make invites me to share in their world. I can also catch a glimpse of what is going on in the lives of aunts, uncles, cousins, nieces, nephews and sundry shirtail relatives and family members I rarely see (and a few I’ve never really met in person), friends I went to grade school with (and haven’t seen in 45 years), neighbors who’ve moved away years ago…and the list goes on.

My own children are on Facebook. I assure you that this grandma loves to read their posts and see the pictures they share.

Yes, Facebook friendships are fun. But the best kind of friendships – true friendships –  are those characterized by faithfulness. These friendships are truly priceless. I have more than my fair share of that type of friend, but let me tell you about two of my faithful friends who have blessed me immeasurably.

Paula & Shary
Paula and Shary – faithful friends

I’d like you to meet Paula and Shary.

We three went to the same church for years and years. We raised our families in the church together, grew in the Lord together, and shared the joy of friendship. Now we three live too many miles apart and rarely see one another. In fact, Shary finally had enough Wisconsin winters and moved to North Carolina! Last September, Paula hosted a sweet little luncheon in her Pewaukee home so that the three of us could spend time with one another while Shary was visiting in Wisconsin. It was if we had never parted. The afternoon just flew by.

At the end of our afternoon tea, the three of us embraced in a little prayer huddle in the middle of Paula’s living room. My heart was so moved as each one of us took a turn lifting one another up in prayer. I tell you, Paula and I know there is no better feeling than being covered in the warm blanket of dear Shary’s intercessory prayer.

Paula and Shary have exemplified the title of “faithful friend” in my life. I cannot begin to tell you how much they have encouraged me in my journey of caring for my mother as she struggles with Alzheimer’s. These two ladies not only pray regularly for me, but they look for ways to be an encouragement.

Faithful friends read between the lines. They look for ways to be a blessing.

Shary “read between the lines” when she picked up on my comment about how much receiving mail means to my shut-in mother. Since then, every so often, Momma is delighted to open a beautiful card from Shary. Within each card is a sweet note and assurance of prayer. Mom reads those cards over and over again. Those cards keep on giving, as mom rediscovers the cards and rereads them again and again. Not only does Shary send cards, but even her daughter and grandchildren got involved at Christmas filling my mom’s mailbox with their love and best wishes.

Dominoes
“Wow, I would love those dominoes!! No more counting dots!”

Most recently, I made a comment on one of Paula’s Facebook photos (pictured). Having just recently played dominoes with my family using a set of dominoes that has a number of tiles with dots that missed being painted, I exclaimed on her post, “Wow, I would love those dominoes!! No more counting dots!”

My kind and thoughtful friend Paula read between the lines. Before I knew it, a package with my name on it was delivered to my doorstep. My very own set of no-dots dominoes just like the ones in her picture!

Tonight, I’m thanking the Lord for these two precious friends and their very encouraging acts of kindness. I praise God that these two ladies paid attention to the “nudging” of the Holy Spirit to bless me in these special ways. May the Lord grant me a faithful heart like theirs – one that seeks to bless others by reading between the lines.