I like to do a bit of cooking and puttering in the kitchen in the first part of the week. I may even do a bit of baking. But, unless we’re expecting company, my fun in the kitchen only lasts until Wednesday or Thursday. That’s okay though. Weekends are made for leftovers. Continue reading “A ‘Grace’ of Alzheimers: Leftovers”
Category: Alzheimer’s
Disappearing Friendships
I caught a glimpse of an old friend at the gym today. I don’t think she saw me pedaling away on an exercise bike while she attended a nearby group exercise class. My face immediately smiled when I saw her, then my heart sank with sadness just as quickly. You see, my friend had walked out on our friendship a few years ago. I never understood why.
I still don’t.
I’m usually pretty timid and non-confrontational – but, as I pedaled, I imagined myself boldly giving my old friend the “what-for.” How could she just leave? Never look back? Never say good-bye? Never again tell me that she loved me and cherished our friendship?
Of course, I didn’t really say it.
Today’s ‘disappearing friend’ experience made me wonder about the friends and family who ‘disappear’ from my mom’s life in her world living with the debilitating effects of Alzheimer’s. As her memories fade, recollection of friendships forged over many years vanish too. Some of her dear family and friends still send cards. She loves to receive them in the mail (and will read them over and over again, each time as if it is the first), but she really can’t remember the person who sent the card. Sometimes a tiny glimmer of recognition glistens in her eyes if I pull out old pictures, or show her that friend’s photos on Facebook, or retell a story she once told me about this friend.
Alzheimer’s is cruel. But, I’m thinking it may also be a form of grace in old age. You see, my encounter today with my own disappearing friendship brought up lingering feelings of deep hurt and resentment, highlighting my own need to exercise forgiveness in relationships. With Alzheimer’s, my momma’s hurt feelings last only for a moment. Then she picks up a coloring book and her colored pencils and the hurt just vanishes.
Before I forget: Sharing Memories
One of the things that I am learning along this road I travel with my sweet mom is that the older memories are the last ones to leave; but, the ability to recount and express these stored up stories does slowly slip away. I find myself wishing I had written down more of the stories that my parents and grandparents told through the years. Continue reading “Before I forget: Sharing Memories”
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.
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.”
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.
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.
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.
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 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.
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.
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
Just 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.”
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.”
The Day Dad Disappeared
Journal Entry – August 3, 2017
The past few days Momma has been paging through the little book of remembrance prepared for her by the funeral home that oversaw my Dad’s funeral arrangements in 2008. While I was preparing breakfast for her this morning, she looked up at me from her place at the kitchen table, tipped the book toward me as she pointed to a picture and said, “Is this how Jerry looked?”
I leaned over the kitchen counter a bit and looked at the page. “Yes, that’s Dad. He’s very handsome, isn’t he?”
“I don’t remember him looking like this.” It was a great picture of Dad, so I wasn’t sure what to say in response. I decided I should gently inquire, “How do you remember him looking?”
My heart should have been ready for her answer. But it wasn’t.
Tapping her temple as if trying to jog a stuck thought loose, with a heaving sigh and disheartened look she added, “I can’t remember him at all. I mean, I can’t bring him up in my mind anymore.”
I quickly swiped the tears stinging at the corners of my eyes, and then mom added, “Really, I can’t. And it’s really terrible when you can’t remember something you know you’re supposed to, and feels even worse when you can’t remember someone you loved.”
As a caregiver and a daughter, I would like to be able to help Momma create new memories to make the ones that are disappearing less painful. The sad truth is, this disease called Alzheimer’s makes it impossible for her to remember whatever fun thing we do, or pleasant conversation we have today. But, by God’s grace, I will continue to do my best to help Momma resurrect good memories and create new memories to enjoy, if even for a moment.
Barefoot Lily Lady 