It's The Little Things....

I think of that Robert Earl Keen song every time I remember "It's the little things." Of course, his song addresses completely different issues, but you get the idea, especially when you hear the last line of the chorus. And dealing with dementia means the little things add up.

Original image from Skip to my Lou

Like the Amish Friendship Bread fiasco. This food fad has hit my circle of friends, and when Deb posted on her Facebook page that she had starter to give away, I thought "why not"? I like to bake, and Bill has a sweet tooth. It would be a good, cheap way to keep fresh baked goodies around the house, and knowing I'd have to bake something every 10 days would be an incentive to keep at it.

Deb arrived with a Ziploc bag of starter and the instructions. I dutifully put the bag in a container on top of the refrigerator, hung the recipe and instructions on the refrigerator door, and started checking off the days until I needed to feed the starter.

• First Mistake: I didn't put a sign or label on the bag.
• Second Mistake: I didn't explain to Bill what it was.
• Third Mistake: I assumed he'd ask if he wanted to know what it was.

Because I was teaching a summer school class four nights a week I wasn't paying much attention to the kitchen. Bill was handling most of the cooking and cleaning or I was bringing home carryout. But when my Google Calendar texted me a reminder that it was Day 6 and I needed to feed the starter, I happily bounced into the kitchen, ready to dump in milk, sugar and flour.

Except I couldn't find it. The kitchen counters were clean and very free of clutter. The lingering bouquet of white vinegar and Clorox (his favorite cleaning supply) perfumed the air. The plastic bowl containing the baggie I had dutifully mushed every day was gone from the top of the refrigerator. 

I looked high and I looked low. I looked in the fridge, in the pantry, and in all the cabinets. I looked in the office and the dining room. I even looked in the bathrooms. I found the bowl, washed and put away neatly with the pots and pans, but the bag of gooey starter had vanished like Bill's short term memory.

And at that moment, I realized I was learning how to cope with this disease. How so?

I didn't ask him where it was (he wouldn't remember), and I didn't get mad because it was gone. 

Progress. 

Wow, if I could handle every "little" thing like this life would be good. And this was before I had the chance to learn a new acronym: DIRM.

Does It Really Matter?

On the first of August the Alzheimer's Association presented a Caregiver's Conference in Denton. In the session on communication DIRM came up, and I thought I should get it tattooed on my wrist where I can see it all the time. (And in the grand scheme of things, it's good advice for EVERYBODY, not just caregivers, but that could be another blog topic.)

So now I'm trying to remember to ask myself a series of questions before I respond to "stuff happening."

1. Did anybody (human or animal) get hurt?
2. Was there any major property damage?
3. Was our security endangered?
4. Was a financial account compromised?

There might be some secondary questions to go with this, depending on the situation, but you get the gist. A fermenting bag of milk, flour, sugar and yeast disappearing isn't a "yes" answer to any of these questions. Move on. Because it doesn't really matter.

I messaged Deb and asked if we were still good enough friends for her to give me more starter when it was time to give some away, and she said "of course."  This bag of goo went into my sewing and crafts room, which is way too much of a "girl cave" for Bill to enter often. Ten days later two aromatic loaves of bread emerged from the oven, and another batch of starter bubbled away on the shelf next to my beading and soap making supplies. (Let me know if you want to be on the distribution list for starter--I have some to give away every 10 days or so.)

And I've found one less thing to get annoyed about.

This post originally appeared on The View From Little D blog on August 13, 2013. 

The Power and the Glory of Caregiving

I teach until 6:30 on Wednesday evenings, but try to get home to go to 7:00 Mass and Adoration. Bill likes to attend a class at the church that begins around 7:30. It works well for us—I get a couple of hours of peace and quiet alone, he gets some fellowship with friends, and life is good.

Leaving the office tonight I called home (we still can’t find his cell phone—I should just cancel that number) and he didn’t answer. I called home 5 times and each time it went to voice mail. So I swung by the house on the way to church, hoping he had walked to the church a few blocks away.

My headlights illuminated the driveway and I noticed the Honda was gone.

The Honda—old, decrepit, and we need to sell it. It isn’t registered, isn’t insured, and isn’t inspected. It’s completely illegal.

Did I mention I took his driver’s license away from him after the last time he got lost?

Somehow, somewhere, he’s found a key to that car and gone somewhere.

In the past, I would panic. I’d fret, I’d pace the floor, I’d rant, and possibly call a friend for support. Not this time.

I drove straight to church, hoping to find the Honda in the parking lot. It wasn’t there. So what did I do?

I went to Mass. It was lovely, as it always is on Wednesday nights. Father asked me to lead the singing when the Blessed Sacrament was exposed, and even though I’m still hoarse from an unending upper respiratory infection, I did.

The peace and silence of adoration is indescribable if you aren’t Catholic and haven’t experienced it. The beauty of solitude is healing.  I prayed for Bill’s safe return, and prayed that I would be able to handle whatever came along.

I returned home about 8:00 and the Honda was in the driveway.  I went into the house and saw Bill and calmly asked him where he had gone. He didn’t answer at first—he said he was on his way to church.  I pointed out that he was late for class, and wondered where he was when I came by earlier.  He didn’t seem to know, or didn’t want to answer. Then he said he had taken his computer to Best Buy to get it fixed, because it didn’t work.

What followed could have escalated. He ran out to the car and said he was driving to church because he was tired of me “keeping him a prisoner” in the house. I calmly explained that he got lost (which he denied) and that the car was not registered, inspected or insured, and therefore illegal to drive. He got in the car, and I stood in front of it. Once in the car, he couldn’t find the keys. Looking around the car, he couldn’t find the keys anywhere. He got out, and was getting agitated. I told him I’d take him to church, but he had to go back and get his book.

Once inside I asked him where the computer was. He didn’t know. He found his book, and then ran back to the Honda to look for the computer. It wasn’t there. I suggested he had left it at Best Buy, but he insisted he didn’t. We went back into the house, and I found the computer tucked away on a shelf. Reassured, Bill agreed to go to church, so I took him.

Upon my return home, I looked for the power cord to the computer. It was completely missing. That happens around here. Things seem to disappear into the air. I can’t find clothes, dishes, books, household items.  I did find the Honda key he had used—then lost—and secured it. But the power cord to the computer had vanished, and I’m pretty sure that’s all that’s wrong with the computer—no power.

And that is the problem—no power. No power to think, no power to reason, no power to remember, no power to adhere to a schedule or keep a neat house. His short term memory is down to seconds, not hours, days or months. I know I need to get someone into the house to spend more time with him, to stimulate him intellectually, but I don’t know how to do that. They all cost money. He has few friends of his own—most are my friends. He seems content most days, but I know the long hours alone while I’m at school are causing his mind to wander and facilitating his constant rearranging of things. It’s overwhelming, for sure.

Less than two weeks ago I met a friend for coffee on a Saturday morning after Mass, while Bill was at his men’s faith sharing group. My friend has a counseling background, and she grilled me. She then suggested I start seeing a counselor and get some exercise as a diversion to manage the stress. I agreed, and said I would do so.

A week later I’m at confession. Father George always asks about Bill. As I’m going through my laundry list of sins and stresses he interrupted me, took my hand and said “Sam, you need to get some exercise, and some recreation, or the stress will kill you and you won’t be any good to your students or to Bill.” I agreed.

Monday I saw my doctor, who reviewed my lab work with me, and told me—big surprise here—I needed to start getting some exercise to manage my stress, and find some recreational activity for a break from the stress.

I guess I need to listen. All those people who tell me the caregiver needs to take care of herself are right. I just need to start doing it.

I will, as soon as I find the power cord to Bill’s computer and make sure it’s working properly.

This post originally appeared on The View from Little D blog on Feb. 6, 2013.