Monday, July 30, 2012

After a lengthy hiatus, I am back to blogging. In addition to Alzheimer's disease and dementia, our family is now confronting the challenges of Multiple Sclerosis (MS). My oldest daughter, Sarah, a young wife and mother of two toddlers, experienced the sudden appearance of leg numbness last Thursday. Thinking she had pinched a nerve, and not wanting to alarm her father and I as we were leaving Saturday to take my mother on a road trip to see relatives before she is too ill to go, she minimized her symptoms.

By Saturday, her symptoms were worsening. There was a loss of balance and multiple falls. A trip to Urgent Care provided no answers, only the advice to go to her primary care physician Monday. On the phone from New Mexico, I asked if she should go to the Emergency Room. She said Urgent Care said no. I texted my friend, Karen, a neurologist, who said go to Emergency right away. Sarah went Sunday morning.

The diagnosis came Sunday night. We had arrived at our first stop on our trip, and we were confronted with the difficult choice--turn around and go home, or stay for my mother's last trip? Sarah was adamant that we should stay, and her sister, Kati, said she would take care of her until we returned. We finally decided to continue with the trip. We had a wonderful time with family, and remarkably, my mother remembers the trip and all of the things we did.

So now, jammed between three serious illnesses competing for my time and attention, I am again reminded how precious my family is, and how everything I do, I am doing for them. There is beauty, joy, grace, and laughter in every day. We will face each new day together.

Sunday, February 5, 2012

Putting on the brakes

Somewhere along the way, my life sped up to warp speed. I am always overbooked, never any margin. I remember one day when a five minute delay in the morning morphed into a seventy minute delay by the end of the day.

It taught me to go faster, not to do less, because the demands and chores just kept expanding.

Friday the lesson came.

I had a doctor's appointment that ended at 4. That gave me 60 minutes to make my follow up appointment, pick up my mother at her assisted living to go buy a new wallet because she lost hers, pick up two teenagers, and get everyone to one of another appointment 30 minutes away by 5 pm.

It took 6 minutes waiting to make an appointment before I had to give up. I called my mom and said "Be ready in the lobby, there in five." Of course, that didn't fly, so I had to park, go to the third floor to get her, and wait while she found her purse and room key. Another seven minutes had vanished.

My stress level was rising.

I called the boys to say I was on my way and got the bad news that they were not together. Another eighteen minutes gone.

I finally have everyone in the car with fifteen minutes to get there.

The freeway is backed up.

Streets, the only option.

Miraculously, the lights were with me. Three minutes late. Score!

Immediately following the appointment, we all had to meet my daughter at the mall to help her with the babies while they got their pictures taken. I had ten minutes to get twenty minutes away.

But my mom was hungry. We drove through and ordered a sandwich. She couldn't figure out how to eat it because it was cut in half. I said eat one half then the other.

She couldn't put half in her lap in the wrapper while she ate the other half. I put it in my purse. That definitely confused her.

She is happily eating her sandwich as I race to the photo appointment. I get there, now fifteen minutes late, and tell everyone to hurry. As I pick up my purse, my mom asks what's in my purse.

"Your sandwich."

"I want it. I'm still hungry"

"OK, but you'll have to eat it fast on the way to the appointment."

"OK, I do it."

I jump out of the car and start to go, then realize she's not with me.

I walk back to the car, where she is eating her sandwich, still seatbelted in.

"Mom, what are you doing?"

"What you said. I am eating fast on the way."

The big aha hit. My mother can no longer be hurried, she can't do things in new or novel ways. She needs to eat how she knows to eat and I need to chill out.

We ended up missing the appointment, but helped entertain the babies while my daughter chose the pictures. And that was enough. It was all I could do.

Thursday, February 2, 2012

Alone in the Halls

I read recently that a high school student in Rhode Island successfully sued to have a prayer removed from the wall of her school. It was reported that she was baptized in the Catholic Church, but became an atheist after her mother suffered a serious illness when she was ten. She said prayer didn't change anything, and she realized it's all a myth. She was quoted as saying that the prayer made her feel that she didn't belong in her school. The article was unclear, but seemed to imply her mother survived her illness.

I understand feeling angry at God because you think he is not listening, or is not granting your requests. Ten is perhaps a bit young to understand the concept of waiting.

Who is God and who do you want him to be? I don't want to be able to understand, analyze, and predict him. The things she reportedly wanted are the things I reject. I want God to be bigger than anything I can even begin to contemplate because I want to believe their is a purpose even when I cannot see it.

I hope this young lady finds the place she where she belongs. There is joy in sharing the path with someone else.

Friday, January 27, 2012

Squeeze Hard Enough, Your Brain Pops Out

The changes came rapidly and all at the same time. My mother-in-law needed to go buy groceries, but as soon as they arrived at the store, my father-in-law said he didn't feel well and needed to go home. He said he would be OK for awhile, and she went back to the store.

She came back to find the house empty, my father-in-law gone.

She went next door to see if he was there, and found out he had gotten disoriented and gone to look for her. A neighbor on the far end of the block saw him and realized he wasn't OK. My father-in-law couldn't tell him his name, where he lived, or what was wrong.

Thinking he's had a stroke, the neighbor called 911 and he was transported to the hospital.

Meanwhile, frightened and alone, he became increasingly agitated and a security guard was called to stay with him.

Ever the romantic, he calmed down the minute he heard my mother-in-law's voice.

Her world in changed. He cannot be left alone anymore.

I wanted to support her, but what words are sufficient on the day you finally have to see the truth?

Meanwhile, my mother's blood levels were obviously low. Her conversation would loop, and she would fixate on things. She was frustrated that I would not help her, not understanding that the credit union was not open on Sunday, and I didn't know when her transfusion would be and she would feel better.

I tried to reassure her, but she couldn't think clearly to understand.

Meanwhile, my son had bronchitis and couldn't breathe. He had missed an entire week of school--the first time he'd ever missed that much school--and was depressed when he realized the extent of the work he had to make up. He was angry, overwhelmed, and vocal.

I agreed it was a tough break, but the work still needed to be done.

Three unhappy people, all needing things I could not give. I wish I had an answer for them.

Friday, January 20, 2012

When the Cosmos Aligns

This week the cosmos aligned and a dear friend's funeral and my birthday were a day apart--both events that normally cause me to pause and reflect on my life.

My friend was a wonderful, giving person who died much too soon. He had been able to retire younger than many people, and was able to fill his days with activities of his own choosing--usually helping people and volunteering at his church.

I don't have the luxury of retiring, but I can make different choices that will make life more enjoyable. I want to spend more time with my husband, kids and grandkids. I want to have lunch with just my mom and me at least once a week. I want to have friends over more often, and simplify my schedule to spend more time doing what I want to do.

Change won't happen overnight, but it has already started.

What changes do you want to make to increase your joy? The time to start is now.

Thursday, January 12, 2012

What's in a Name?

Being new to blogging, I had no idea how you're really supposed to name your blog, so I just picked something. I should have read the book first. Turns out there are rules. I broke them all. But at least I didn't go with my first idea which went down in flames.

I thought about naming my blog "Reflections of an Ordinary Housewife." My husband helpfully pointed out that I am not a housewife, and even if I was, I wouldn't be, because that job is obsolete. The best I could hope for would be "ordinary homemaker," and that doesn't have quite the same ring.

Which led to the question of "ordinary." How do you quantify ordinary? I see myself as the epitome of ordinary. I exaggerate all the time, but that's actually true, so imagine my surprise to discover you can't be the epitome of ordinary without disqualifying yourself from the honor. Seems some people think that means you are extra ordinary, which is not the same thing at all.

Then came the issue of reflection. Who knew that word came with so many job requirements? You have to have quiet moments in which to reflect. You need to be still. You need to have a shiny surface.

It's a lot easier to be a jamwich.


Dementia has its own code or language, and you have to learn to decipher it, or you are always in the dark about what's going on. Of course, I'd likely be clueless anyway because it's so difficult to learn.

This is a typical dementia-speak exchange that occurred at a Chinese restaurant.

Me: Mom, what would you like for dinner?

Mom: Nothing. I'm not hungry.

Me: Well, why don't you order a little something anyway, because maybe you'll be hungry when the food comes.

Mom: No, I'm not hungry.

The food arrives.

Me: Mom, would you like some of this?

Mom: No, I'm not hungry. I don't want anything.

Moments pass.

Mom: Why can't I have something to eat? We're at dinner.

Me: What would you like to ear?

Mom: Rice.

Me: Just rice?

Mom: Yes.

Me: That's boring. Why don't you at least order chow mein or something?

Mom: No. I know what I want. I want rice.

I order rice. The rice arrives. Mom takes a bite.

Mom to my husband: Would you like some rice?

Husband: Oh, no thanks, I have walnut shrimp.

Mom to me: Want some rice?

Me: No, thanks, I have beef chow fun.

Mom to my son, getting upset: Do you want my rice?

Me: Mom, don't you want your rice?

Mom: No, I want what you're eating. Why can't I have good food for dinner? Why will you only buy me rice?

Total fail. No communication occurred until it was almost too late, and I don't want Adult Protective Services to have to come translate for me.

Now I know that "My teeth hurt" means she wants to go to the dentist for a cleaning, "This is for the baby" means she wants to barter some item she got for my granddaughter for something else she wants, and "I want to go for a drive" means I am spending my day taking her shopping.

I wonder if someday my mastery of this new language will qualify me for service with the CIA.

Wednesday, January 11, 2012

The Real Cost of Cancer, Part 1

I have two beautiful and talented friends whose lives are parallel. They are both smart, talented, and funny. They're both married to supportive husbands with whom they run a small business. Both have breast cancer.

Most of us fear the diagnosis and all that can go with it--surgery, chemotherapy, radiation, losing our hair, our dignity, maybe our life. Both of them have handled the medical aspects of cancer with humor and courage.

They lives intersect in the other cost of cancer: the human cost. Often too ill to work, their incomes have been slashed in half at a time when their expenses have risen dramatically to cover the costs of their treatment.

Both are in danger of losing their homes and their businesses.

I wish cancer was the only thing they have to worry about. Still, they carry on with grace and gratitude.

They are both busy planning for their future.

Thursday, January 5, 2012

The Important Things in Life

Today I have been thinking of all the people I love. I am very blessed to have so many friends and family members I love and who love me back.

Some of my relationships seem effortless. Some fill me with happiness and laughter. Some walk alongside to guide me through the hard times. Some require a lot of clarification to communicate clearly. Some need a lot of time and energy. A few are difficult and fill me with a sense of hope for the day when they will be easier.

I know I am all of these things to you, too. I require effort, I make mistakes, I don't say I love you often enough.

You are the music in my life, the light that leads to joy, the most precious thing of all.

You're imprinted on my heart.

Wednesday, January 4, 2012

Insurance Business as Usual

My mother lives in an assisted living facility, where she spends her days going on outings, hanging with her friends, and eating great food that she doesn't have to cook. She goes on all of our family outings and is so busy, you have to schedule her in advance if you want to see her.

She had employer sponsored medical insurance coverage for retirees, but the company decided it was cheaper to have retirees get coverage through MediCare so we had to find a new plan. It seemed simple enough. The change was set to take place January 1st and was supposed to be "seamless", but her previous prescription coverage cancelled her November 30. They said it was because someone changed the address and if we changed it back, she would be reinstated.

We changed the address. Coverage was not reinstated.

My power of attorney was cancelled with the policy.

Policy can't be reinstated without power of attorney.

Unless they talk to my mother.

She doesn't understand what happened, but my mom gamely tries to explain it to them. They ended up so confused, they don't document that she gave them permission to talk me.

So they need power of attorney.

But you need a policy to have power of attorney.

Shake and repeat. Indefinitely.

Sunday, January 1, 2012

Random Thoughts on New Year's Day

Yesterday while visiting family, I attended an 80th birthday party for one of my in-laws' dearest friends. My father-in-law didn't really recognize his friend anymore and didn't seem to be sure where he was, even though the party was at the church he has attended for several years. While he was eating birthday cake, he forgot where he set his fork and started trying to eat his cake with his plastic knife.

My father-in-law is a well educated man who is slipping away, a victim of Alzheimer's disease. He can no longer follow a conversation or string together a sentence longer than a few words. He used to be the family dominoes champion, but can no longer understand the simplest game.

Alzheimer's is a long goodbye to the ones you love.