I could never forget you

When you have Alzheimer’s you can’t remember that you don’t need to worry about something. So you do worry. A lot.

Mom worries about such things as whether there is food in the fridge and if she’ll be able to afford the things she needs to live. There is, and she will.

When we have guests, she worries about how they’ll get home in the dark, or where they’ll sleep for the night. She will oftentimes tell our guests that they can sleep in her bed if they need a place to sleep.  Sad, but sweet.

Her worries are usually small ones. She worries every night about whether or not she has a toothbrush. She frets about leaves and twigs out in the yard, or the water on the deck after a rain.

Other times, her worries are big. Her biggest worries are about the future. Just today, she came out of her bedroom with a worried expression on her face and said, “Oh, good! You’re here! Can I ask you a question?”

“Well, of course. What do you want to know?”

With tears playing in the corners of her eyes, Momma said, “So, do they have places for people to go when they’re not able to do anything anymore and are just waiting to die?” She paused for a few seconds, then added, “I mean, I don’t have any money. I can’t do anything to earn any money. Where will I go to die?”

As I have done countless times now, I assured, “Momma, you don’t need to worry about that. You have plenty of money.”

“I do? Well, where is it?”

I assured her that her money was safely in the bank and that her son-in-law was taking good care of it by investing it and helping it to grow. Then I added, “And you are staying here in my home. I will take care of you. You don’t need to worry about how much it will cost.”

“Oh, good! Thank you!” She struggled to point her walker in the opposite direction and said as she shuffled away, “Now, I’m going to go take a nap. I feel so much better.”

I smiled as I watched her slowly amble toward her bedroom down the hall. Then, as if she forgot something important, she turned once again and said, “Now, if you move or go any place, you remember you’re taking care of me. Don’t forget to take me with you!”

“I won’t, Mom. I could never forget you.”

Henry’s Basilisk Birthday Cake

We recently celebrated our grandson Henry’s eighth birthday. I haven’t a doubt in the world that he has already begun planning what his ninth birthday cake will look like and what should be on next year’s birthday gift list.

My daughter described her boy so very well on her Facebook post commemorating her second son’s birth.

“This kid will start a conversation with a stranger with “Do you want to learn about me?” He refuses to let a bee sting slow down his fun. He crosses his eyes in his school portrait just to make people laugh. He’s always thinking about something grand. He has my heart. Happy birthday, Henry!”

He has his Grandma Cindie’s heart too.

Henry snuggled up to me on the sofa at our family Thanksgiving gathering with a special request. He wanted US to decorate his birthday cake together. This boy always has a plan.

“We’ll have mommy bake the cake, ‘cuz her cakes taste good,” then gushed with great anticipation, “and I will help you decorate it because you make the cakes look good.”

How could a grandma refuse?

Henry further informed me of his grand plan. He wanted a “basilisk” cake, then told me everything he knew about basilisk lizards. It’s a good thing that this boy is a walking encyclopedia when it comes to anything reptilian because I had NO IDEA what a basilisk was. Henry and I poked around a little bit on Google so he could show his less than informed Grandma Cindie what one looked like. I didn’t know there were basilisk snakes (of Harry Potter mythology, of course) and basilisk lizards. Henry assured me he wanted the lizard variety. “It’s cool, Grandma! It can run on water.” (Click here if you’re even remotely interested in learning more about basilisks.)

Yes, that is pretty cool. And a pretty ambitious decorating feat for the two of us. I am by no means a professional cake decorator but willingly spend an entire day trying to come up with whatever a beloved grandchild dreams up.

We were up to the baking and decorating challenge.

I ended up baking the cake using my daughter’s recipe, baking up three chocolate 8″ layers to hopefully carve up and assemble into something that resembled a lizard…a basilisk in particular. My hubby helped me shop for a few of the details we would need, per Henry’s ideas, like orange M&M candies to make the eyes and animal crackers to crush and use for making the sand the basilisk would be crawling on.

As his mommy said, “He’s always thinking about something grand.”

In preparation for our big lizard making day, I poked around on Pinterest for a few ideas as to how to create something that resembled a lizard. I baked the three layers of cake ahead of time, then made up some delicious chocolate cream cheese buttercream frosting. I cut one of the cake layers in half and “glued” the two halves together with froting to make the body of the lizard, using this dragon cake as a general guide. I wrapped the body and the remaining cake layers in wax paper, then slid them into freezer bags and placed them in the freezer. Several Pinterest reviewers suggested this step of freezing the cake would make carving the cake and frosting the cut sides of the cake a little easier (it was a good idea).

Dragon cake - naked
Idea and photo credit: http://www.dinnerwithjulie.com/2010/08/07/chocolate-dragon-cake/

We would celebrate Henry’s birthday on the Saturday which followed his official birth date. Henry would come over in the morning after breakfast. We’d work on constructing his cake throughout the morning, Papa would take him out to lunch (so grandma could do parts of the construction that were better done without the help of an 8-year-old), then we would resume decorating the (hopefully) lizardy-looking creation during the afternoon. All of this in anticipation of a family celebration of his birthday with pancakes for supper (his request) followed by his special birthday cake and presents.

We had fun together. I’m not sure that we ended up with the basilisk of his imagination, but one thing was clear. No matter how it turned out, Henry would love it because he had worked on it with me. Several heartwarming times throughout our day together Henry told me he loved me.

As we worked side by side, at one point Henry asked me if we had bought a birthday present for him. Before I could answer, he quickly added, “It’s okay if you didn’t because making this cake with you today is like the best present ever already!”

My heart smiled.

I assured him we had a present for him too then teasingly asked, “Do you want me to take your present back?” Eyes wide open he wagged his head an emphatic no.

Making Animal Cracker Sand

The first task for Henry was to crush the animal crackers to create the sand that would be used later in the decorating phase. As he rolled over the crackers with the rolling pin, he retold the family story of how he would squirrel away animal crackers under the cushion of his highchair so he could help himself to a treat when Mommy said no to his request.

We laughed together.

Next step was for Henry to carve the tail out of one of the layers of cake. We made it fatter than a real basilisk’s tail because nobody would want a piece of cake that skinny. Henry deemed it the perfect lizard tail. I popped that tail back into the freezer while we worked on carving the legs and head and crown-thingy (the crest, I think) out of cake. Henry let me do most of that carving, adding ample praise as I worked.

Tail-carving time

Henry told me about his best friends at school.

It was lunch time. Papa took Henry out for lunch so I could pay attention to my mom’s needs. Momma has Alzheimer’s. I had worried that she would not cooperate, as she can be a handful on one of her bad days. Thankfully, she had rather enjoyed watching us work at the kitchen table together.

While Henry and Papa were enjoying cheeseburgers at Culver’s, I put the lizard head together and affixed it and the tail to the body with more frosting. Returning from their guys’ lunch together, Henry was super excited to see what had been accomplished in the construction phase, and we set ourselves to work creating a cross-section of a tree for the lizard to climb. We stuck the lizardy-looking parts in the freezer again while we worked together to create tree rings and bark out of chocolate frosting.

Next came the hard part. Frosting the little guy. I made a batch of cream cheese buttercream frosting without chocolate. I reserved a little plain white, then tinted the remaining frosting in a few shades of green. We propped Mr. Basilisk on the log, then added legs and started frosting with a crumb coat of green. (Freezing the cake greatly helped keep the cut edges under control, as did using a frosting spreader dipped in warm water.) Once he was thoroughly crumb coated, we started piping on frosting, smoothing here, adding “scales” there, shoving bits of leftover cake and frosting into gaps, and chatting as we worked.

Henry added the orange M&M eyes and was happy with how it looked. Basilisks also have white dots that run down their sides. Henry carefully added  white chocolate chips for the bigger dots and then and dotted white cupcake sprinkles in just the right places to make the little ones.

While he worked on those details (and snitched a few white chocolate chips), I melted some of the white chocolate, then tinted part of it green and part of it orange (took a little artistic liberty on that color). I piped this onto wax paper to create the  arched fin-like crest that continues along its back and tail. After the melted chocolate hardened off on my chilly back porch, we peeled it off of the wax paper and added those fun details to his birthday cake.

The birthday boy’s eyes lit up. He had one word to describe our creation.

“Awesome!”

That’s the same word I used to describe my day with the birthday boy.

When Life Feels Meaningless

Every now and again, Momma says something that makes me get up, grab a piece of paper and a pencil, and write it down. Sometimes I use the quote as my writing inspiration, other times the note gets buried in one of my too-numerous stacks. Today I stumbled upon one such note I scribbled on a scrap of paper more than two years ago.

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Back in the days when I lived with Momma in her senior apartment.

My mom was still living in her senior apartment and I was camping out on her living room sofa each night. (I’m so glad that those days are over!) It was well after midnight and I could tell Momma was restless and agitated in her bedroom on the other side of the wall, so pulled up an app on my phone and looked in on her via our D-link camera. There she was sitting in the dark on the edge of her bed just looking around. Her back was to the camera, but I noticed she was reaching for tissues every so often, so suspected she was crying.

I decided to go check on her. Sure enough, she was crying…and very glad to see me. I sat on the edge of the bed and, with my hand on her shoulder, asked what was wrong.

“Oh, Cindie! My life is so meaningless,” Momma lamented through a flurry of tears. What have I even done in the past few days? I feel like I’m not pulling my weight around here. I feel useless. Just so useless!”

Just a few short years ago, I would be hard-pressed to find a busier or more productive lady. Her life was filled to the brim with post-retirement activity. Mom traveled every year with my Dad to all of his Air Force reunions; their trips took them to so many interesting places. Mom kept her retired nursing skills relevant, oftentimes accompanying a friend to a doctor’s appointment, visiting someone in a nursing home, or helping someone recovering at home understand their doctor’s orders. When Dad went through surgeries and treatments for any of his five cancers (colon, prostate, melanoma, lung, and sarcoma), she was right there beside him helping him too. My mom was super-involved in her local church – her church family knew they could count on her in any of her various ministry endeavors too.

As busy as she was, she always found time for opening the doors of her home to those in need. Several of mom’s children and grandchildren received help from her (and dad) through the years. If a grandchild needed help earning money for something they “needed,” Mom and Dad always seemed to have a too-well-paying job for them to do. A few of them needed more substantial financial help as they grew older – she was always generous. Some needed a place to stay on the cheap – there always seemed to be an extra bedroom to sleep in (with magic clean sheets every week), and favorite foods in the never-empty fridge.

Momma can’t do any of that anymore, but she really wants to help – to feel useful again. Don’t we all want that?

My sweet mother’s tears reminded me that one way I can be a blessing to her in these declining years of health is to make that extra effort to make her feel useful in her remaining days on this earth.

Paper Trails

Tucked in our stack of mail when we returned from our little trip to NYC, Wayne and I found a letter from the Veteran’s Administration. Not too unusual. As I am Brad’s power of attorney for healthcare, and Wayne his power of attorney for finance, we are used to receiving communication from the VA.

This letter, however, was telling us that Brad’s income for 2016 may have been too high to qualify for the benefits he received in that year for his care at the VA. Brad had spent quite a bit of time under the care of the VA in Milwaukee, including surgeries, radiation and chemotherapy treatments, oodles of labs, x-rays, scans, medications…you name it, he had it in 2016.

I think my heart skipped a beat when I read and re-read the letter.

When I first took Brad to the VA, he had been bedridden for several months and was growing weaker each time I saw him. He hadn’t been employed in several years, had just a few hundred dollars in cash to his name. He didn’t have a car, and Mom was providing the roof over his head and the food he consumed. We were aware that he had a modest IRA account funded by a previous employer, having learned that when we were working with Mom’s financial planner, who also managed Brad’s funds. However, in sorting through piles of statements and unopened mail, and probing into his financial affairs, Brad seemed otherwise destitute.

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From this time on, Brad would be dependent on a wheelchair and never return home.

Thankfully, when I took Brad for his first appointment at the VA, the financial counselor indicated that he was qualified to receive care. I mentioned the IRA, but he said that wouldn’t be considered with regard to his qualifications – it wasn’t considered income. So, Brad went through nearly a year of excellent care for the cancer(s) they discovered. Over that period of time, Brad gradually lost the strength in his leg muscles and became dependent on a wheelchair.

With mobility issues in mind, it became clear that Brad could no longer safely live in Mom’s home (especially since  she had Alzheimer’s and we were going to sell the house and move her to live near us). So we cashed out Brad’s retirement account in order to pay for the nursing home care Brad would require once he was discharged from the hospital, not thinking about the “income” restrictions associated with his VA care.

Next came the “spend down” phase leading toward being eligible for Medicaid. To assist us in this process, we retained an attorney who specialized in elder care law. She suggested that before the nursing home got all of his assets, we spend money on a car which would accommodate Brad’s wheelchair (so I could transport him to and from doctor appointments and such), pre-pay Brad’s funeral expenses, and set aside a portion of his funds in a Wispact special needs trust account  – this account would preserve some of Brad’s retirement funds to help us pay for future necessities not covered by Medicaid or the VA. For instance, Brad does not qualify for dental coverage through the VA, so we can pay for any dental work. When he needs items of clothing or toiletries, we can purchase it for him and be reimbursed by his Wispact account.

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Me and my ace record keeper

Once again, I am thankful for my husband’s careful diligence in financial record-keeping. He spends a lot of time entering data into spreadsheets and scanning receipts and invoices. I called a phone number provided within the letter to receive a little clarification. Turns out my hubby’s paper trail will come in handy; we basically have 60 days to produce documentation of how we spent that money on Brad’s behalf. The allowable expenses will adjust his “income” and reduce what he will owe the VA. It looks as if we will end up reimbursing the VA some funds for co-pays, but not as much as he would owe if we had not kept these records.

IMG_0672This little note is not a rant of disappointment with the VA medical care. Not at all. We’re so very grateful for the care he is receiving. It’s not even a complaint about our surprise in finding out we would have to pay for services received. Rather, it is a reminder to those providing healthcare or financial oversight for loved ones to keep careful financial records and to make wise choices in how you use funds in order to preserve funds for future expenses. No less important, make sure you have any legal documents in order, including power of attorney. 

Many times in my caregiving journey for my mom and brother, I have no idea what step I need to take next. The path sometimes seems dark and uncertain. But God is faithful. He always gives wisdom in our decision-making, provides for our needs, and sheds light on the next step we need to take.

I pray that by sharing this experience, God may use it to shed light on someone else’s next step in their caregiving journey.

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 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?

Small Changes

Back in September, I wrote “The Slow Backward Slide”, chronicling the toll my sedentary lifestyle as a caregiver had taken on my own physical health (you can read that here). As you may recall reading, I took heed to my doctor’s insistent voice reminding me to take care of myself first.

I went home from that doctor’s appointment and asked for a gym membership for my birthday. My hubby’s gift truly has  been the gift that keeps on giving as I see each effort I make slowly make small changes in my well-being. Here are some snippets in diary-entry fashion  of some of the many things I have noticed since I began paying closer attention to my own physical needs:

  • 9/15/17 – 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.
  • 09/21/17 – Began taking an exercise class that Jenn (the gym’s manager) recommended. Though my piriformis muscle issue makes some of the exercises painful, I can see that it will eventually help.
  • 10/4/17 – Had the physical therapy consultation that my doctor ordered. Amazingly, the problem I was referred for is clearing up with the exercises I’m doing at the gym. Physical therapy told me to keep doing what I’m doing, gave me one more exercise to add, and sent me home. Yaay!
  • 10/26/17 – As I was taking my class today, it dawned on me that the exercises which brought excruciating piriformis muscle pain a month ago bring no pain at all today. Praise God for strengthening my body.
  • 11/6/17 – Okay, so maybe I need to take the ‘distance’ feature on exercise equipment with a grain of salt. Today’s workout – 13.8 miles covered in 60 minutes. Last week’s workout on a different machine, but same amount of time  20.0 miles. Hmmmm! I guess the distance doesn’t really matter, just so long as I keep moving in the right direction.
  • 11/20/17 – Having a bad body image day today. Ugly crying going on here.
  • 11/21/17 – Hit 15 miles on the exercise bike today!
  • My husband told the world (well, his Facebook world) that I was beautiful today. For the first time in a long time, I believed him.
  • 11/28/17 – I rode the exercise bike for 15.4 miles today following my Tuesday class. On the way out, Eva at the front desk encouraged me by saying, “You’ve made a lot of progress even since I started working here.” (She began her job at the gym about a week after I joined.)
  • 11/30/17 – I had fun in my exercise class today. Even felt myself moving to the beat of the music. I could only do 7 miles on the bike today due to time constraints, but I felt so much stronger than when I began this journey.
  • 12/1/17 – Realized today that, since October 1, I have read at least six really good books while riding the exercise bike. One of the books I read twice! I’m enjoying exercising both my body and mind.

One of the things I appreciated about my new gym was that it had a theater where you could use any number of exercise equipment choices and watch a movie while you pedaled, ran, rowed or stepped. I watched part of one movie the first day and thoroughly enjoyed it. The next day, however, I brought along a book and found an exercise bike with a book rack in another part of the gym, then read as I pedaled for 30 minutes. Not long thereafter, I began pedaling for an hour, reading as I pedaled.

You’ve probably heard the saying: “You can’t pour from an empty cup. Take care of  yourself first.” Before I knew it, I had plowed through a book I had been trying to read all year long, feeding my soul while I exercised by body and filled my proverbial cup.

 

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.”

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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.”