A Grace of Alzheimer’s: a lesson in suffering

My heart was recently challenged by reading a book from the Heroes of Faith series – the biography of Watchman Nee by Bob Laurent. I was so moved and inspired by this man’s faith, his godly wisdom, and courage in the midst of persecution and trials of life greater than I will ever experience. So challenged was I by his life and teaching that I found myself yearning to learn more from him. I reserved two books written by Nee through my local library: “The Normal Christian Life” and “The Character of God’s Workman,” and am currently reading the later.

I take a book with me when I go to the gym each morning, having purposed in my heart to use this time to exercise my body and feed my heart, mind and soul too. I have come to treasure this precious time…an hour on an exercise bike is over before I know it. As I pedaled and read today, something in chapter 3 made me think of my dear mother.  In this chapter, Nee speaks on 1 Peter 4:1, regarding our Lord’s attitude toward suffering and its admonition for Christians to have the same attitude and mind as Christ in our various earthly encounters with suffering. Nee notes that many Christians who encounter trials in life find themselves side-lined, withdrawing from serving Christ. Nee challenges the Christian reader by saying:

“No one who serves the Lord may stay home during rain and go forth only after the sun comes out. If you have the mind to suffer, then you will work on in spite of privation, difficulty, pain, sickness, or even approaching death.”

I immediately thought of my mom when I read that bit today, causing me to reflect on some of the ways she handled the trials in life.

When she was faced with having to take early retirement from her nursing job due to budget cuts the county was facing, my mom rejoiced. Now she could serve the Lord more in her local church.

My parents’ ministry to their family also carried on – cancer, headaches, bad knees and all. Where most retired couples have empty bedrooms, my parents had a steady stream of children and grandchildren occupying those rooms. It didn’t matter if they were out of a job, or cash-poor students, there was a bed with clean sheets, and a fridge full of favorite foods.

Each time my Dad faced a cancer diagnosis (five different cancers in his lifetime), mom was by his side for his surgeries and treatments. She could have used that as a perfectly plausible reason to back out of her ministries, but she kept on serving in the church, working her ministries around helping him. She also encouraged my dad to persevere in his church attendance and ministry as long as he was able. Only the final debilitating scourge of sarcoma took my dad away from his volunteering as a handyman at his church, and as a driver and treasurer for Christian League for the Handicapped.

When my dad died, my dear mother grieved, but she didn’t wallow in her grief and discontinue her ministries. Quite the contrary! She and a friend who was also a recent widow set their minds and hearts toward forming a ministry to other widows and widowers.

As I look back over her numerous notepads and journals that I packed when she made her move from Milwaukee, I can see that she was aware her memory was failing long before it became noticeable to anyone else. If I read between the lines, I can see there was a certain amount of fear that came with the awareness of memory loss and where it might lead. Knowing that her memory was fading didn’t stop her from serving in her many ministries. Even when the disease reared its ugly head enough for her friends to take notice, she never said, “How can I possibly take on the Lord’s work when I can’t even care for myself?”

Though my mother certainly had a “mind to suffer” in whatever hard things life threw her way, there did come a time when Alzheimer’s dealt a life-altering blow. The day came when driving to church was no longer an option. Another day came when planning anything was an insurmountable obstacle. Then, a time when remembering names was an impossibility. Everything about life was changing and becoming very hard. Only then did her ministries begin to fall away – not because she wanted them to, but because it was time.

Even now, in this time of life “approaching death,” I see in my sweet mother’s life yet another “grace of Alzheimer’s” – the grace of Christ-like suffering.

 

Why “Momma”?

An old friend recently noted that I refer to my mother as “Momma” in my writings. She wondered whether my mother would prefer to be called “Mom”.

I’m not really sure why I refer to her as “Momma” in my writing, other than it being a term of endearment between us. Most of the time, when I greet her, I say “Hi Mom!” I’ve never really noticed, but would venture to guess that I usually call her my ‘mom’ when I’m talking about her with someone.

‘Momma’ is a decidedly southern term of endearment; two sounds hitched together – Mom+ma. I use the less common spelling of Momma, but you’ll more often see it as Mama – also two sounds hitched together – Ma+ma.

‘Momma’ is not used much here in Wisconsin where I’ve raised my own children. My daughter calls me “Mom” and my son calls me the even more casual, ‘Ma.’ I answer to both without preference for one or the other.

Though my mother has lived in Wisconsin since 1955, she was actually born and raised in West Virginia. In my mother’s world living with Alzheimer’s, her years in Wisconsin have all but vanished along with her ‘accent’ and all but a few words and phrases from her upbringing. In her mind, she is still living in West Virginia. As I recall, most of my cousins call their mothers “Mom,” which to my northern ears sounds more like a slightly drawn out “Mawm” than my “Mahm”. But, oftentimes, when talking about their mothers, my cousins also say “my Momma” too. So, I think it is safe to say it was a pretty common term of endearment for mothers in her earlier years.

All that to say, I don’t really know why I sometimes call her Momma. I just do. It’s the term I use when it’s just the two of us. I hear myself call her that when I tuck her in at night and say “Goodnight, Momma. I love you. See you in the morning.” To which she will usually reply, “Goodnight. I hope I’m here in the morning.”

As I head upstairs to bed each night, I often think, I hope you’re here in the morning too Momma. But, if you’re not, I know you’re in a better place – a place where you long with all your heart to be.

 

My Caregiving Dream

Everyone tells me I need to take care of myself. “You can’t take care of your Momma if you’re not taking care of yourself.” I hear it from my family, my doctor, friends at church, my Facebook friends, and my on-line support community at myALZteam.com.

It’s true.

So, I’m trying to listen. I joined a gym and have been getting regular exercise, striving for 5 days a week while my hubby keeps tabs on Momma. It was the right thing to do and has been so helpful.

My concerned friends also say, “Take advantage of respite care. You need to take some time away – maybe go on a vacation.”

True again. But, I’m finding that one easier said than done.

Looking into respite care options has opened my eyes as to how difficult it is to find respite memory care in my community. I found two facilities with a room available: one would require that we bring our own bed; the other seemed perfect, albeit expensive.

Me and my guy in NYC

Thankfully, my sister was able to arrange her schedule so she could take care of our mom while we got together with our kids and their families over Thanksgiving and again for our recent vacationing in NYC.

It concerns me that there seem to be so few options out there are for someone with Alzheimer’s. I am learning that places which advertise offering respite care do not have dedicated respite care units. Rather, you fill out paperwork, have your loved one evaluated, then get their name placed on a wait list. Then you wait for someone to move out or die.

If I had the resources, my caregiver dream would be to build a respite care facility that would offer all the usual assisted living amenities, but operate a bit like a hotel, with guests staying for a few days to a month. My dream respite home would serve restaurant style meals, or bedside meals, depending on the guest’s particular need. Hallways would resemble a neighborhood street, with each door a different color, and a comfy chair or two outside on their “porch” just for sittin’ a spell and talking with passersby (you can see in the pictures below that I’m not the first to think of this).

My Dream 3
Photo credit: sixtyandme.com
My Dream 2
Photo credit: tsomides.com

My little “neighborhood” would have a business district too. Pampering would be a high priority with a beauty parlor and a barber shop. A little store for “buying” snacks and comfort items would provide the dignity of making choices – maybe even an “ice cream parlor” serving up a scoop of the day.

In my dream, I also see a beautiful little chapel where guests could hear the Word of God preached and sing great hymns of the faith as they worship God.  I would invite churches to bring their choirs and youth group ensembles to sing too.

I envision a wheelchair and walker-friendly theater featuring classic movies with closed captioning. We would host music and dance recitals allowing young music students to interact with the memory-impaired through the heart language of music and the arts. I can only imagine the joy this would create.

My Dream 1
Art Therapy

Artists could share their passion – painting, jewelry making, knitting, card-making – showcasing their art form and perhaps encouraging our memory challenged guests to get creative too.

 

Dirt Therapy
Dirt Therapy

Oh, and we certainly can’t forget the gardens!

Yes! In my dream I see amazing gardens (with plenty of lilies, of course!), planted and cared for by volunteers, scout troops, garden clubs, and youth groups. Of course, there would be multiple raised gardens where guests could play in the dirt to their heart’s content.

I can dream, can’t I?

Missing the ‘Old Life’

“What do you miss most about your “old life”? 

Michelle Daly posed this question for caregivers on a recent blog post. It’s hard for me to choose just one thing, so I’ll mention the ones that come to mind first.

I miss sleep. Uninterrupted sleep. I’ve been sleeping with a video baby monitor on my nightstand long enough now that I’m learning to tune out Momma’s “normal” noises and harmless sundowning activities, such as rearranging her drawers and taking inventory of the contents of her purse. I have learned to tune into her needs, such as times when she needs extra help in the bathroom, or when she’s afraid and confused. So, I am getting more sleep, but uninterrupted, monitor-less sleep would be nice.

Me and my guy

I miss impromptu ANYthing, but especially the little spur of the moment daytrips with my hubby. Those days when we would just hop in the car and end up at Devil’s Lake for a hike, or down on the UW Campus on one of the walking paths, or just meandering through an out of the way garden center. Fun times.

Momma loves Pastor Jeremy and his family!

I miss having people over for dinner. But I’m working on that one. Momma’s usually social self is impaired by her Alzheimer’s frets and fears, making taking her anywhere a chore and very stressful for her. But, the hostess in her loves to have people come and visit with us over lunch or supper, so I’m trying to incorporate more social time with others into our week. Last night our friends Jeremy and Anouk came over for a pizza night with their two children, Mia and Isaiah. Such fun!

A blast from our past – my twisty grandgirls

But what do I miss most? If pressed, I’d have to say “time with my grandkids” is the thing I miss the most. No more impromptu slumber parties, ‘Fun Fridays’, trips to the library, or excursions to the zoo or a nearby park that usually end with a trip to Culver’s for frozen custard.

Violet & Charlie in a friendly game of Othello

Tonight four of my grandkids came over for pie and ice-cream and a little visit. From the moment they walked in the door with their mom and dad, they were clamoring over what we would DO together.  The grandsons wasted no time in pulling out some classic board games. The boys took turns playing “Battleship!” with me, with George getting a little help from big sister Violet. Later, our five-year-old George brought out a chess set and asked for help in playing it. Even though this particular chess set has a few pieces missing, his Papa and Daddy helped him learn to make moves and we delighted in his gloating over captured pieces. Granddaughter Violet and her brother Charlie played ‘Othello,’ another favorite game of strategy. I even got in a few hands of ‘War’ with Henry. When I wasn’t playing one of the games, I was just watching and smiling…beaming, actually.

Momma and her little friend Mia enjoy coloring together.

I love these times with family and friends, and wish there were more of them and that they could be longer. But tonight, I’m just grateful for our little get-togethers. Momma loves to color and will gladly share her coloring books and colored pencils with her great-grands and little friends. Seeing children laugh and try new things brings a quiet joy to her eyes. The memory of their visit will soon disappear, but the contentment and joy linger in her heart just a little longer.

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.

Are You the One in Charge Here?

Lately, my sweet mother has been more than a bit confused about her living accommodations, referring to our home as “this facility” and “this place.” Not long ago, she swept her hand out in gesture as if encompassing her living space and said, “Are you the one in charge of this place?” I told her yes it was our home and that Wayne and I both welcome her to live here. “Oh,” she replied, “are my meals and laundry included?” I assured her that they were. To which she replied, “Well, they haven’t fed me all day, and I think they’re stealing my laundry. I can’t find it anywhere.”

Not long ago, she was telling Wayne that “someone who works here” had given her some pills. She wasn’t sure who it was, but figured they knew what they were doing, so she took them. It was Tylenol, and it was me giving them to her just moments ago. Oh, and the “people who clean this place” and do the gardening around here just aren’t doing their job. The floors are always dusty. The gardens have so many weeds. “You should talk to them,” she insists.

I can watch Momma’s nighttime activity on a WiFi video monitor that sits on my nightstand. That’s a blessing because I know when she needs something…and a curse because sleep is interrupted quite often. On a few occasions, I’ve come down in the middle of the night to check on Momma because I could see on my monitor that she was crying. Sometimes it’s just confusion about where she is, but oftentimes it is her worrying about how she is going to pay for this place when she can no longer work and earn money. She’ll sometimes tell me that “they” are going to kick her out when her money runs out. On those occasions, I’ll sit with her for awhile and reassure her that she is loved, that she is retired and has plenty of funds, and that we will always take care of her no matter what.

One of Momma’s blue pots

Momma can make you smile with her wild tales about how she came to live here. On Saturday, a friend from church and her two young daughters spent the morning with Momma so that I could attend a Bible Conference with my husband. They had a delightful time, but, oh, the stories Momma told them while I was away. She enjoyed telling how this house was hers and that she shared it with us, describing how we had divided it up into her side and our side. And, of course, she had planted the gardens, adding to them over the years. (Mind you, she has only lived here since May!) She even shared with the girls that she had made her three blue flower pots when she was in kindergarten!

Of course, all of this is very real in Momma’s mind. That’s just a little taste of the confusion and disorientation that happens with the progression of Alzheimer’s. Not only is Mom confused about her accommodations, but also about the relationship of people to her.

“Mr. Winquist” and yours truly

Most days, she still knows us. Wayne is often referred to as “Mr. Winquist” – her term of endearment for him. Other days (mostly in the evenings), in her mind, I’m her sister Carolyn. As we look through picture albums or recall stories from her childhood, she tells tales of her youth as if I had been there too, sparing me the details with, “Well, you know. You were there too.”

My sister has been coming every other week or so to stay with Momma for a few days so I can get a little down-time. A few hours before each visit, I remind her that her daughter Vivian is coming. Sometimes she’ll give me a quizzical look and ask, “So, help me remember. Is Vivian my daughter? Or is she your daughter?”

On one of Viv’s recent visits, Momma came out of the bathroom and was looking for her Mom. Rather than remind her that her mother has been deceased for many years, Viv just went along with her and said, “Your Mom is not here right now. Can I help you with something?” Mom replied, “I just need to find my Mom.” I peeked my head out of the laundry room door and waved. Momma spied me and said, “There she is!”

So, in my mother’s mind right now, I’m her mother. That’s okay by me. She took good care of me for many years. Now, in this circle of life, it’s my turn to take good care of her.

 

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.