Singing in the Rain

I’m a hummer. It probably stems from the fact that I love music, but can never remember all the words to a song. So, I just hum.

Not always, but often. I hum when I’m driving, when I’m walking through the grocery store, when I’m in the garden, or even doing a mindless home-making task.

Sometimes it’s a familiar tune – maybe a tune I heard on the radio or sang in church. A song that just gets stuck in my head and my heart. Sometimes I even catch myself humming the little ditty that my dryer sings when it’s finished drying my clothes. Other times it’s just a little nonsensical tune I make up in my head. Continue reading “Singing in the Rain”

A ‘Grace’ of Alzheimers: Leftovers

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”

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.

Not a care in the world when you’re coloring!

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.”

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?