Loving Mom

I posted on my regular blog some of the things on my mind lately regarding Mom and Alzheimers. I'm more selective about what I say there, but wondering if it's time to combine these two blogs.

Do any of you keep the Alzheimer's stuff seperate from your other writing? If only it were so easy to categorize the hard stuff in other areas of life.

http://emuf.blogspot.com/2011/06/loving-mom.html

Mother's Day 2011

I posted photos from Mother's Day on my regular blog: http://emuf.blogspot.com/2011/06/mothers-day.html.

Try as it might, Alzheimer's can't steal our joy.

Raw

I found this in my journal from last summer.


Dry, emaciated, thirsty heart

despite a deluge of tears.

No oasis to gather strength.

Just enough time to

catch my breath

lower my eyes

move on in the sandstorm.

"You're so strong."

It’s bitter in my ears.

It's vinegar on a sponge.

'Strong' isn’t worth this.

'Strong' isn’t a package delivered on the doorstep.

'Strong' is footfall after weary footfall when
the destination is too far away to be seen and too far away to imagine.

"You're stronger than you know."

I know how lonely I am.

I know how much pain warrants a comment like that.

I know that headaches and heartbreaks

hurt like hell.

"You'll be such a comfort to someone else in a similar circumstance."

Not if I run the other way.

I want nothing to do with this much grief.

I don’t want to prolong the pain.

I want to distract myself

to avoid the guilt of enjoyment,

the self-conscious gratitude I feel,

knowing not everyone is still able to

write

read

remember 

dream.

But what can I say?

I cock my head.

I smile knowingly.

I change the subject.

I'd like to shout.

“Oh, you noticed?

It's not just me?

It's shitty, right?

What do I do?

I'm terrified.

I'm not strong, just bullied into silence.”

I'm maintaining.

I’m keeping my balance.

I’m remembering to breathe.

But it takes so much energy.

Don't ask me for an update.

Don't act like you know how it feels.

Don't tell me a story about someone who went through something similar

(it makes you less credible, not more).

Don't reminisce about the old days.

Don’t use past tense.

If you say, "She was such a wonderful person," I'll scream.

You don't know the half of it.

Allow me a wide berth.

Let me not explain my mood.

Forgive me if I'm abrupt.

Silence is a good gift.

Let me sleep. It's the only thing I do well.

Learning Patience

Mom’s 58th birthday was last week so my sister and I took her out for lunch. There’s strength in numbers. I told my sister recently that I wish I was as patient as she is with Mom. Sis takes it all in stride and smiles and soothes and makes Mom feel comfortable. I cringe and avoid eye contact and bite my tongue to keep from crying.
Mom needs help getting in and out of the car. She has a hard time with steps and moves slower than she ever has. She fumbles and can barely feed herself. Her speech is broken and often trails off into nonsense as she loses track of what she was saying. She’s easily distracted and comments on odd things.

The amount of patience it requires to spend time with her is excruciating to me. It’s hard to distinguish the pain of seeing her struggle with the frustration of having to help. Bottom line is that I’m angry. Being around her churns up all my anger over the unfairness of her disease. I try to make Mom laugh and stay light hearted but often it’s a false happiness I model. She can no longer tell that I’m faking it.
My sister told me that her patience took practice.
So I cut myself some slack on our outing and allowed myself to be out of practice. We had fun! Mom is still in such good spirits. She LOVED seeing us and said repeatedly, "My girls! I miss you!" We fussed over her and helped her change into a fleece jacket. She put on her new slip-on shoes with gel soles which she loves. My sister fixed her hair. Mom told us that Dad said to let us help her style it after he blow-dried her hair that morning. It still looked like she'd slept on it.
We said goodbye to Dad around 2:30pm and I said, "don't wait up!" Mom was all smiles.
Mom got into the car without any help, probably because she was excited and didn't over-think the mechanics of maneuvering into the seat. We buckled her seat belt and pulled out of the driveway, commenting on the new neighbor's changes to the property next door. There were backhoes and trucks in their driveway. The lilac bushes I loved as a kid were all gone. Mom said, "I worry about Zelda [the cat] getting out. They have lots of dogs."
We had a late lunch in one of our favorite restaurants. We took a bunch of pictures of each other at the table while we waited for our food. We joked and told Mom stories. She loved listening, like any mother would. Her sense of humor isn't gone and she laughed over our exaggerations, miscommunication with our husbands, cooking foibles, and adventures at work. And when we repeated stories, she enjoyed them just as much the second time around.

My sister and Mom



Me

 We were talking about headaches and I told my sister, "Maybe sneezing really hard would help; you could just shoot it right out your nose."

Mom frowned and said, "Oh, goodness" with the exact same inflection I'm used to. That's always been her indirect way of saying, "Ick! Stop it!" It was nice to hear that familiar phrase, as if she was good-naturedly scolding me like she did when I was a kid.
After eating, we did some antique shopping. I was worried Mom might break something, but she followed us around the store without help and gently touched the things that caught her eye. I felt like a parent as I supervised her. We laughed over the weird things we saw and pointed out the dishes and fabric that reminded us of family friends or grandparents.
I caught Mom looking at me a few times and when we made eye contact, she smiled really big. It was obvious she missed us and was happy to be with her daughters for the afternoon. It was really healing for me, too: relieved the guilt I was feeling about avoiding discomfort. I genuinely enjoyed myself.

It was a really nice time. I love and admire you, Mom.

In heaven

Mom and Dad came over on Sunday, while waiting to get into the walk-in clinic. Mom woke up complaining of an earache. The clinic had a three hour wait, so Dad called my husband and I to see if they could stop by. We were free, and I was glad to see them both. I think it's a treat for Mom when she comes to our home, and it's nice to be able to offer her something as simple as conversation on the couch. It felt really comfortable. I fed them veggies and dip as I finished a batch of fresh bread sticks. Felt very domestic and proud to serve snacks to my parents.

Our two cats were glad to have more attention, and Mom LOVES it when they sit with her. They both joined her on the couch, one curled up on her lap in the crook of her arm, the other alongside her. Lots of happy squinty eyes and purring.

"Look Dad, the cats love Mom," I said.

We stood nearby and watched her pet them both, a little crammed in the corner of the couch, but happy.

Mom beamed.

She started singing in her best Frank Sinatra crooning voice, "Heaven. I'm in heaven..."

Priceless.

Book Review: Twilight Travels with Mother

Twilight Travels With Mother: How I Found Strength, Hope, and a Sense of Humor Living With Alzheimer's

Mary Ann Mayo

Published in 2003 by Revell

250 pages

Mary Ann Mayo describes the 22 years her mother spent with Alzheimer's Disease, how it affected their relationship, and the impact the disease had on their individual lives. She addresses her own fears of having dementia upon turning 60, the age her mother was diagnosed. She incorporates her research on the disease with her family's experiences and shares information she wishes she had access to while caring for her mom. She also writes about ways to age gracefully and emphasizes the steps she's taken to leave no unasnwered questions for her own children.

Describing the emotional journey with her mother, Mayo writes of traveling on a winding road:

The pace was leisurely - meandering and lingering along the way. Interspersed thoughout and generally with no warning, a corner would be turned leading to a new precipice; some were steep, others gradual. Occasionally the decline proved a mere detour; other times it necessitated a complete remapping and reorganization of her journey. Unremittingly the voyage continued, with each course correction resulting in greater hesitancy, additional anxiety, and less joy (page 11).

Her persepctive as a daughter is valuable to me and I appreciate the personal experiences she shares (stories of her mother's behavior were the most interesting). Not everything in the book applies to me or my mom. One thing I'm thankful not to relate to was the change in her mother's personality as the disease progressed. She writes that throughout her life, her mother was typically passive agressive but pleasant. In the throes of Alzheimer's however, she became paranoid, demanding, and aggressive. Her mom even verbalized that she never wanted Mayo as a baby. Talk about adding insult to injury.

In the first few chapters, Mayo compares her mom's experience to that of her two aunts (one older and one younger than her mother). The oldest lived to age 90 with a sharp mind but unhealthy body. She was afflicted by a series of strokes over several years, but her body gave up before her mind did. Mayo's mother, the second-born, lived a healthy lifestyle and her body remained in good health, but her mind was weakened and eventually destroyed by Alzheimer's. Several minor strokes had a greater, more debilitating mental impact on her than her older sister's more serious strokes. The younger of the two aunts is alive and considerably well (at the time of writing) in her late eighties.

Of the three, she continues on, not having escaped dementia but somehow succeeding in staving it off to the end. Her sisters have passed on, one with a great body but very little functional brain; the other with a functional brain but a body that just quit working (page 49).

Comparison of these three sisters forms the basis for Mayo's research, as she tries to understand the influences on each one's health or lack thereof. While examining her relatives aging, Mayo cites the impact of family history, head injuries, education, and an Alzheimer's gene. With her extensive research on dementia, she quotes studies and statisics, but includes exceptions to every "rule."

I thought it would be easy to keep the content of this book at arm's length and not get emotionally overwhelmed because of the difference in age between myself and the author. However, Mayo spends so much time discussing how to age well, I started feeling like a hypochondriac: I turn 30 next year. It's all downhill from there! I also had a knee-jerk reaction of regret: did Mom have enough vitamin B12 in her diet? Was her depression deeper than I knew? Could this have been avoided? A growing body of information on possible causes and influential factors is mildly comforting, but a recurring message in the book is that every case is highly individualized. The mysteries of the disease don't make coping any easier.

Chapter four focuses on ways to push back the onset of Alzheimer's (including heart health, stress, nutrition, diet supplements, drugs, healthy habits, and faith) and chapter five covers the challenges of diagnosis. Chapters six and seven cover definitions of dementia and Alzheimer's, and the newest research on symptoms and medications (already seven years old, I imagine this information is now outdated, or at least incomplete). Chapter eight is about finding a balance between independence and adequate care (i.e. supervision) for a person with Alzheimer's.

Chapter nine discusses caregiving and the excrutiating task of being responsible for a parent who is less and less the person you know and love. Mayo shares aspects of her mother's progression through Alzheimers:

• She believed Mayo was trying to steal the family farm.
• She re-married several years after being diagnosed, but on the way to the wedding, forgot she had said "yes" to the proposal, and demanded Mayo take her home.
• She had several behavioral problems at the care facilities she lived in (power struggles with staff, fights with other residents, etc), and Mayo was called on more than one occasion and asked to make other arrangments.
• She told Mayo she did "everything she could to miscarry" when she was pregnant with her.

Despite these harrowing experiences, Mayo still writes the following:

When Mother died, I missed her. The unrelenting responsibility for over twenty years and the contrant second-guessing of what the best care might be had been part of our relationship, not its totatlity. Those who seek to avoid caring for a loved one risk missing an experience that has the portential to heal, teach and satsify (p 181).

Chapter 10 is titled Dying with Dignity. I couldn't read all of it. It's filled with hope and faith and gestures toward eternity, but it's beyond my ability to process right now. When the time comes, this will be a helpful resource, but I'm going to keep it on the shelf until then.

The most poignant message of the book is to live well mentally, physically and spiritually. Mary Ann Mayo sums it up well by stating, "Alzheimer's is a crash course in learning to live in the moment" (p 24).

Gardening for Mom

Today I'm going to Mom and Dad's to do some weeding in their flowerbeds. The dandelions were waist high last time I visited, and while I have some time off work, I'm going to pitch in. Manual labor is the easiest way to help Mom these days. It's so hard to take her on outings or spend time chatting because I lose patience after a few hours. I find myself avoiding eye contact because I don't want her to see how hard I'm trying to hold back tears or biting my tongue.

Mom has her support group meeting today, so I'll be able to garden uninterrupted. Last time I worked in the yard, she came outside to help, but needed constant supervision.

I tried to make it as simple as possible, by piling all the weeds I'd pulled on the lawn. Instructions like "put these weeds in the wheelbarrow" baffled her. She lifted the handles of the wheelbarrow.

"No Mom, put the weeds in the wheelbarrow."

She lifted the handles again. It must be the order of the words, I thought.

"Pick up these weeds right here, the weeds."

She lifted a handful of weeds out of the wheelbarrow and started putting them on the lawn.

Sigh. It's painful to see her try so hard and fail. I try not to think in terms of pass or fail.

Once we finally got a wheelbarrow full of weeds, I asked her to take the load to the backyard. She was gone for a long time. I ran into the house to use the bathroom. When I came back, she was in the front yard again, but no wheelbarrow.

"Where'd the wheelbarrow go?" I asked, without impatience.

She pointed to the backyard and muttered something about needing help (her speech has gotten harder to follow; sentence structure is a tough one for her these days).

We walked to the backyard together. Still no sign of the wheelbarrow. I asked her to show me where she went. She was at a total loss. We walked up the neighbor's driveway. There was the pile of weeds, near a lilac bush. It was out of sight until we were standing right above it.

Mom laughed at herself and tried to diffuse the awkwardness by saying, "Oh, your poor mother."

"It's OK," I soothed. "I'm sorry you had to go hunting for the brush pile!"

My mind raced. How the heck did she confuse our backyard with the neighbor's driveway?

I feel guilty about "avoiding" her today, by going when I know she won't be home. A family friend is picking her up at 10:30 this morning and I'll have about four hours to make some headway in the garden. It feels like the best I can offer right now. We both love gardens and flowers and I think it will mean a lot to her to be able to see her flower beds again. Maybe I'm just justifying my choice. Especially after all this recent blogging about her and reading books on AD (which I will review here), I don't have it in me to be emotionally available to her.

Hacking at weeds and getting dirty and uprooting overgrown shrubs seems more appropriate, at least today. The negative emotions need an outlet.