Lovin' La Mama Loca

New Life

2011-04-23T13:45:00.000-07:00

There have been events that have changed the direction of my life in the last couple of months. I've been riding them out for awhile, before blogging about them.

1 day into my new job, back in February, I realized that Mom was in some pain. She'd probably been sick for a few days, but I'd missed the cues. If I questioned her about her suddenly grasping her abdomen, she'd merrily respond, "What?! I have no pain." How do I call the doctor and ask to get her in right away...because I'm not sure why?

Of course, if you let some things go, they worsen and it was suddenly terribly obvious that she needed to see her doctor. I cut out early on the 2nd day of my new job to take her to Convenient Care. Her illness, thank God, was treatable with antibiotics and painkillers, but they still took a few days to kick in.

I got up at the buttcrack of dawn to tend to Mom before starting Day 3 of my new job. I arrived to find a gargantuan mess. Her bed was wet and soiled, she was wet and soiled, the floors were wet and soiled. I set water running, and stepped out of my sweater and blouse, to keep from making a mess of my own clothes, and got Mom into the shower. I settled her in warm jammies with a cup of tea, then stripped beds, started laundry, washed floors, cleaned carpets. Then I raced out the door to try to get to work on time.

Of course, I realized that I'd left my phone at home, so I had to head in the opposite direction. As I approached the house, I realized that my clothes were still in Mom's living room. I found another outfit, grabbed my phone, and hit the road to my new office where I was going to arrive late and have to explain that I had to leave early today. Frazzled and stressed, I decided on the spot:

It's enough. I'm done. I've done a good job. I'm proud. But I'm done; I can't do it any more.

I called a case manager that mom had been assigned to ages ago, and, without reservation, told her "I need help. Today."

Within an hour, I had a call back, with news that there was an opening at Champaign County Nursing Home, 1 mile away from her home, 3 miles away from ours. In Garden View Court, a unit set up specifically for Alzheimer's patients. This was looking good.

I took care of Mom through the weekend, and the following Tuesday, I loaded her and her baby doll, "Savannah," into the car. I told her we were going to go somewhere that there would be nurses to take care of her all while I'm at work, and she would have lots of girlfriends to talk to. She was excited.

Mom and Savannah

It was harder on me than it was for Mom. It's kind of like dropping your kid off for her first day of kindergarten...but not. I didn't know how it was going to go, and you know...it's still a nursing home, with nursing home sights and nursing home smells, and nursing home nurses, and it's intimidating on your first day.

I was teary, and worried, and anxious, but instantly comforted when we arrived: The staff was waiting with open arms for Mom...and a stroller and a blanket for Savannah.

Mom got her settled, and took off like she'd lived there for years. Several staff members stopped to admire her baby.

Her bedroom overlooks a walking path (good for pushing strollers on), in the midst of a garden tended by Master Gardeners.

There's a small aviary, and this is her favorite bird:

"Oooo! Pink and purple!," she says.

8 weeks later. You can see by the pictures that she's pretty content in her new home. She sometimes asks to go home, but she imagines a home in which she is a child, and there are friends and family around her. When I remind her that she would have to sit by herself all day until I get off of work, then she agrees, that she likes it better where she is.

I focus now on paperwork and the exorbitant out-of-pocket costs for Alzheimer's care, while I adjust to living a life that doesn't rotate around tending to Mom. I have been amazed to discover how much of my time, energy, and money have gone into taking care of her, but I'll save that for a different post.

It is a new life for both of us.

I am damned proud. I am proud that I took care of my mother as long as I could and as good as I could. I made a few mistakes, and I know I was criticized along the way by a few friends and family that felt I should have put her in a nursing home earlier.

Ahh, but they weren't there, my armchair critics. I don't move blindly through my life. The decisions I made were the right ones, for us. I kept my mother happy, safe, and healthy for as long as I could, and took action when it was beyond me.

Yes, it's made for hectic schedule in my life, at times. So what?

I have, for years now, wondered at people that "console" me with the words "it's as if you've already lost her." Really? Because things have changed, and she is not the same woman that she once was, I have lost her? She no longer IS? I bristle, darlings. Would you think that of your spouse, your best friend, your sister? Your child?

Let me explain that her pronouncing "Jingle Bells" as "Bangle Jells" doesn't make her dead. I have not lost her. She is a beautiful little girl that wants to sing Bangle Jells and Jesus Loves Me. She likes babies and birdies and shrimp and bacon. Not a day goes by that she doesn't tell me I'm beautiful, thank me for all that I do for her, and tell me that she loves me so much.

Sigh.

And she is safe and happy, and I rest easy, these days.

Life is good.

*Shout out to my new employers, Jennie & Paul Edwards, who never blinked an eye over my sporadic first weeks in their office, reiterating only "Mom comes first." You guys just dropped right out of heaven!

Bleah.

2010-11-15T19:55:00.000-08:00

I haven't been writing much, lately, here, there or anywhere. Truth is that taking care of Mom is burning me out a bit. Lately I feel like I am tired every minute of every day. I'm not sure if we're going through a temporary phase or if we're entering a new stage of Alzheimer's, but Mom has been particularly, ummm, quirky lately.

Where I have previously been able to anticipate her next move and prepare for it, she lately takes me off guard.

I go to put lip balm on her lips, and she bits the end of the chapstick off.
I let her smell a candle, and she licks it.
She breaks into dance at the most inopportune moments--more often than not when we're surrounded by displays of glass.
Her fixation with her hair and hairbrush has returned, she brushes her hair constantly, and calls me on the phone to tell me how much hair she's recovered from her hairbrush.
I looked up this evening to find her combing her hair with her fork, while we sat eating in a restaurant.
She wants to tell you that you are beautiful, or handsome. This sounds endearing, but strangers are very put off by it. I run constant interference, worrying that she'll some day approach the wrong person, and end up with her feelings hurt, or worse.
She wants to constantly shove a blanket in my face while I'm working in her house. "Here! This will keep you warm."
She cannot find the toilet tissue or flushing handle in any bathroom besides her own, so needs assistance everywhere we go.
I've mentioned before that the slightest discomfort brings forth a response of pure agony. I'm supposed to take her blood pressure every day, and each time she screams "Why is this happening to me?"
She rarely puts the phone back on the hook, and if I do not call her intermittently throughout the day, I arrive to find her sobbing, telling me she thought that I no longer love her.

In addition to all of these little issues, her attention span is waning. When I direct her, for instance, to slide her foot into a shoe, she agrees to, and then walks away, shoeless. When I remind her she needs to put a coat on, she says "ok" and continue out the door as if I haven't spoken, only to turn around and announce that it's freezing outside. Herding her through a door, or to the correct car, or away from the mens room is a constant chore.

We have then, a giant Catch-22. She is lucid enough to not want to be sequestered. She wants to get out, go shopping, go do something. But taking her out is getting to be more than I can handle, alone. Getting and keeping her attention requires a certain amount of sternness. Holding the car door for her, and telling her to get in doesn't work. "Mom! Get in the car! We have to go now!" will get her attention. It also, often, hurts her feelings, and we come back to "I know I bother you."

I've written here before that I have gotten some in-home help with her. Daily help has been a Godsend to be sure, but her condition advances, and I seem to fall further behind. I have enlisted the help of medical counselors to start shopping for assisted living in Alzheimer's facilities after the beginning of the year.

I feel incredibly guilty. I feel like I should shirk off tired, and continue to do everything I can. I scold myself "It's not about you! You don't even have this disease! You have so much to be thankful for! Stop feeling sorry for yourself!" But I also feel like I'm exhausted to the point of making myself sick. I'm too tired to do what i need to keep myself physically and mentally healthy. Meal planning? Exercise? When, 10 p.m.? I find myself answering every question addressed to me with some story about my mother. Things I do, I just do not do any more. I don't even know what things I do.

I have no tidy way to finish this post up, I'm too tired to think of anything clever. My mother, she is precious, and I do love her.

Alzheimer's sucks.

The end.

Illness and Chaos and Drink-Your-Water Awareness Week

2010-10-31T16:23:00.000-07:00

(This blog was first posted at This Just In.)

The last couple of weeks have been busy, fun, hectic, and exhausting—Clint and I have both had the sore throat/cold thing that's been going around. No sympathy for us though, we admittedly ignored common remedies, trading in cold meds and bedrest for full-speed-ahead fun, camping one weekend, and heading to St. Louis for Oktoberfest the next.

Unfortch, this thing that's going around isn't giving up until you do, and I have never been terribly good at paying attention to my own symptoms. This contradicts my tendency to frequently announce "I think I'm getting sick." Since I rarely actually get sick, I worry, instead, that I'm a hypochondriac. I am then paranoid about being a hypochondriac, which brings me full circle back to ignoring my symptoms.

I digress. I spent last week coughing and hacking. Muscle aches began to set in, and I was complaining of a back ache by Tuesday. Late Wednesday I was visited by abdominal pain and fever, and vomiting began in the middle of the night. My God, I thought, this is the worst cold I've ever had.

I finally took a freakin' ride on the Clue Bus on Thursday, when—I'm sorry, I know this is entirely too much information, but it is what it is—when I began peeing blood. UTI. Never having had one before, I didn't recognize the symptoms, and just thought I felt lousy all over from the cold. If I hadn't felt so sick, I'd have felt silly. I came home with a bundle of Rx, went to bed, and called in sick on Friday morning. Recuperation was cardinal.

Around 11:00 Friday morning, Mom's caregiver called me, and told me that I needed to come right away. "You're mom's not acting right, and I've already called and ambulance."

We raced over to find that Mom had lost, or nearly lost consciousness. She was dazed and looking ghostly. Lisa's description of the events took me back a couple years ago when Mom ended up ER and was released with a diagnosis of vasovagal syncope, which means, "she fainted."

I'll cut to the chase and tell you that Mom is fine, but this time around the trip to the hospital was a lot tougher. Her blood pressure was the culprit, plummeting every time she went from a sitting position to standing. Although all tests looked good, they decided to admit her for the night, to keep her under observation.

I've mentioned before that Mom has a very low pain tolerance. Alzheimer's plays a huge part in this; she simply can't anticipate pain, doesn't understand it, and, if it lingers, doesn't remember what caused it in the first place. Every half-hour or so, it is sudden and brand new.

You can imagine, then, how much fun it was to have an IV needle stuck in the crook of her arm for 24 hours. "What IS this? Why is it here? I want it OUT!" She finds the blood pressure cuff agonizing, and sobs every time the machine turns on. I talked her through 2 shots in her stomach. Poor thing tried to grab the nurse's hand the first time, knocked the needle out, and had to get second stick in the gut.

I can't even imagine how terrifying it would have been for her to be there alone for 24 hours, so it was slumber party at the hospital night for us. Tim and Brandi stayed with Mom while Clint and I ran home, and I returned with my own meds and a pillow, to settle into the recliner next to Mom's bed.

The recliner from hell. There it is, look at it, someone needs to exorcise that thing.

SSsssss!

Anytime anyone sat in this chair, it reclined. If you wanted to recline, however, say, to get a little sleep, you had to physically hold the chair in the reclining position. I managed to get positioned just so a few times by locking my feet and stretching out to the top, and hoping my weight would the hold the chair open. Victory was short-lived; the second I relaxed into sleep, the chair would snap shut, sending my pillow flying and leaving me misaligned and flailing for balance.

Between the chair, the nurses stopping in every 45 minutes, and keeping a constant ear on Mom so that I could keep her from pulling out her IV, I think we were lucky to each have logged 60 minutes of sleep Friday night. It was a tough, tough night, and we were both more than relieved when we were given the all-clear along with the final diagnosis: Dehydration.

Dehydration!! Dehydration, the culprit! Though she's drinking water every day, and every one of us pushes it, apparently she's not glugging down enough of it. Dehydration, we learned, zaps you of strength, and blood pressure, apparently, especially when you stand up too fast.

We all know drinking lots of water is important, but I got a first hand picture, this weekend of what a lack of it will do—and also what rehydration will do. After being plumped up with a quart of IV juice, I was amazed at the change in Mom's demeanor.

A-MAZED, people. She was funny and energetic, and lucid. Well, lucid for Mom. She was downright jocular when she found out we got to leave. While I was helping her get dressed, I found 3 of those little EKG thingys still stuck to her. I was as careful as I could be, while she cringed and sucked in her breath, and yelled "ouch, ouch, ouch." When the last one was finally off, I was still unsnapping her hospital gown when I teased her, "Lord, Mom, you act like I'm killing you." She didn't miss a beat, but suddenly snapped "WELL, IT HURTS, GOOFY!"

Did she just call me Goofy? We paused for about 3 seconds before we both just fell apart laughing until we cried. Funnier yet, while we were busy giggling, she had lost track of the fact that I was undressing her. She was still laughing when she looked down and realized her hospital gown had fallen away, and she screamed "oh my God, I don't have any clothes on!" and she began howling with laughter all over again. I was by then bent over the hospital bed laughing and crossing my legs to keep from peeing my pants, which, under my personal circumstances, meant my own meds were kicking in, and I was getting better too!

We were burning rubber out of the hospital lot by 2:30, and although we should have both gone home for naps, we were too busy still laughing, and so happy to be out of there that we went shoe shopping.

Mom, rehydrated, is something to behold; she is energetic and happy, and way more on top of her game. She's still Mom, and she still has Alzheimer's, but she's more confident and exercises a tad more logic. For her, these attributes are monumental, and my own eyes have been opened:

Water, water everywhere, if its that good for her, I'll have a glass too.

I will drink my water and count my blessings. We were there for a visit, for one night. It sucked, but I sat listening to nurses giving morning reports of other patients that had been there for weeks, with still no end in sight. I can't imagine, and I thank God that sleeping in a hospital is foreign to us. It was a 24-hour annoyance, with a merry, "let's go shopping" finale.

We are, I was reminded this weekend, incredibly blessed.

My turn to forget...

2010-03-26T21:14:00.000-07:00

There are hard days, and there are hard days, we say.

It's been a hard week.

Last Saturday I picked Mom up early. We had lunch with my brother in law, Tim then came back to my house to hang out for the afternoon. When I'm working around the house on the weekends, I like to have her here, for a little socialization on both our parts, even if she decides to go take a nap. It gets her out of the house, we spend real, normal boring family time together.

We had a mundane interruption to the day, when I had to run to Office Depot for toner. I was locking up the house and herding her down the sidewalk when she asked me "do I have Alzheimer's?" I distractedly answered, "Yep."

When I say I was completely inconsiderate, I mean I was just that. I didn't put one iota of thought into my response. She knows she has Alzheimer's, so I simply figured there was more to the conversation. She might then declare "but I can still do things!" It would be a typical conversation

About 1/2 hour later, we were on our way home, and she suddenly burst into tears "why...why...would you love me? Why would you like me?" I was stunned with the outburst, but began giving her a list of reasons I love her, and asked her where this was coming from.

She sobbed harder. "With what I have. I'm not a good mother."
It wasn't until then that it hit me: She hadn't known she had Alzheimer's. She knew at one time, but she'd forgotten, and I had completely pulled the rug out from under her with my nonchalant answer to her question.

And for the last week, I have not been able to undo this; she just found out she has a disease, and she cannot be cheered. She a failure. She can't drive. She is supposed to be in a role of helping me, and she—she can't do anything!!!!

There is some light, today, after a week of convincing her that she is beautiful and worthwhile. "You know," she says, "I can do a lot of stuff." I joined right in on all of the stuff she does, "You read the paper every day, and you always know the weather. You take care of Buddy, and take care of yourself all day long until I get here"

"I can't take a shower," she reminds me.

"Yes you can! The faucets turn backwards, and it's hard to get the warm water right, that stupid thing is half-broken!" I tell her. "Don't I just get the water right and you wash yourself?" It's kind of true, and she's gleeful. And she can answer the door, and she can call me on the phone, and...

...and it was a tough, tough week with Alzheimer's. There is simply a point of no consolation, where you do and say what you can, and you have to let go and let God, and this will work itself out, and she'll come to terms with her situation.

Someday, she will forget again. And then...I will either be ready for it, or I'll have forgotten also, that she doesn't know.

Tomorrow is always a new day.

Gasp!

2010-03-07T19:38:00.000-08:00

One thing that I appreciate about Mom's current state of mind is that she still gets the joke. Teased lovingly, she will understand and laugh right along. This afternoon when we were near the mall, sirens in the background set her to speculating. "Someone probably fainted at Bed Bath and Beyond," I teased her. (Long story short, if you don't want to read all of that: She had a cramp, held her breath, fainted, and took a ride in an ambulance.) She recognized that I was teasing her immediately, and said "I don't ever want to do THAT again!"

And there are times that *she* gets *me.* And she damned well knows it, which makes it all the funnier.

We were sitting at five-points yesterday (for you townies), when someone, somewhere, honked their horn. "Shut up" I said. She chimed in "Yeah!" "Yeah, Mom! Tell them `Shut the hell up.' "

"I would never say that!" she chided me. I assured her: "I know you wouldn't."

"No!" she said, "but I would say `YOU BASTARD!!' "

It was then that I almost fell right out of my car door, which is exactly what she'd been anticipating. We both screamed with laughter, me still out of total shock, and she for having gotten one over on me.

My mother, she does not swear. She rarely gets angry, and when she does it's almost humorous for it's lack of frequency. Any family and friends that know her can now testify that they, also, upon reading this just fell out of their computer chairs.

Hand on the Bible, yes she did.

She said the b-word.

She got me good.

Going bananas?

2010-02-17T07:51:00.000-08:00

Mom has a barky little Pekinese named Buddy that keeps her constant company. She adores him, but occasionally gets aggravated when he barks at strangers. "Next time I'll get a cat," she threatens him.

I was washing her hair today, and when done, had her bend over so that I could get her hair wrapped up in a towel. She was yakking away about Buddy's barking, and said, "you know what I want after Buddy?"

A cat, yes, I knew it was going to be a cat, but I bit anyway, and asked her what she wanted.

Dead serious, from underneath her towel, she yelled "A monkey."

Taken off guard, I guffawed right in her face.

She defended herself: "Monkeys have to eat too. Plus, they don't bark."

Hm. I think her new book may have just backfired on me. If you have a box full of Monkeys free to a good home...please don't call us.

Teeth Real Fast

2010-02-15T12:34:00.000-08:00

Oral hygiene has been an interesting endeavour as Mom's Alzheimer's progresses. Brushing her teeth is do-able, but finagling toothpaste confuses her. Our best solution this far is for me to put the paste on the brush for her every day, and hand her one of these:

The electric toothbrush has been a Godsend; it does a lot of the work, and she gets a kick out of using it. It's also easier for me to help her with it when she decides to skip the back.

Friday evening I got her all gussied up for dinner. After shower and hair, I told her "Let's brush your teeth real fast and then we can go." While I was squeezing the toothpaste out, I heard quite a clattering in my right ear, and turned to find Mom standing about 1 inch away, doing what can only be portrayed by this 3-second video:

I gave her a look of utter confusion and some amusement, and she explained:

"You said `teeth real fast!' "

And then she collapsed into giggles. Once again, I followed suit; she can be kind of clever sometimes.

Bookworm Mama

2010-02-08T08:51:00.000-08:00

My mother was always an avid reader and library patron. She still enjoys reading, although I'm not always sure what she comprehends. She reads aloud now, working over words and sounding them out when necessary.

She enjoys reading the newspaper, which is great—any cerebral exercise is good. She does not, however, remove the newspaper from the plastic bag it's delivered in, in inclement weather. She simply reads through the plastic, and hones in on words that disturb her: Burglary! Murder! Articles about children put her in a tailspin. I've considered starting a Good News Newspaper for Alzheimer's patients.

Anyhoo, Mom's been repeatedly questioning me lately, "Where do you get books?" When I tell her they're available at the bookstore, she exclaims "Oh!" as if she'd never heard of such a thing. The topic has come up often enough that I informed her, yesterday, that we were going to the bookstore. "Yipppeeeeee!" she said.

When we arrived at Barnes & Noble, she informed me that she likes Murder She Wrote. Murder mysteries. Hm. Murder. Based on her tendency to get upset at what she reads, sometimes, I steered her away from murder books. And books with bad words.

"Ooooo, that's wrong!" she told me, calling me back to show me this one she'd spotted.

"Bitch!" she exclaimed, a bit too loudly. Tsk, tsk, I agreed, that is a bad word, let's keep looking.

We browsed through technical books, and then I found a section of books suitable for her. She decided to keep looking, and we browsed through other aisles. After awhile, I nonchalantly strolled back through the Mama-suitable books. "Oh, look!" she said, exclaiming over a book she'd rejected before. I gushed also: "Oh, how cute, would you like to buy this one?"

Yes, yes she would like to buy this one!

Off we went, then, with her bag o' goodies.

Ahhhh. There's nothing like settling in under a warm afghan with a cup of tea and a good book.

Tinker, Tailor, Soldier, Spy...

2010-02-05T12:46:00.000-08:00

...or rather, "Banker, Groomer, Gardener, Chef," if you find yourself in the role of caretaker for an Alzheimer's patient. Throw in grocer, maid, dental assistant, handyman, manicurist, chauffer, recordkeeper, tax accountant, veterinarian, receptionist, dishwasher, and laundress.

Oh, and let us not forget: Nurse.

I have always had a bit of queasy nature; nursing is one job that I could never pursue because of it. Puke makes me puke. Snot, spit, pus, pee, poo...ugh, take my lunch away, I can't eat anymore. And blood! Blood and bones should always remain inside one's body. I don't want to see, read about, hear about, or even imagine either of those two things outside of anybody's body. True story: I once fainted over movie blood.

It is to the great amusement of my family, then, that I always seem to be the one present when Mom has any issues with any of these things. Could it be my niece, who has a degree in forensic science, and would love to play in pus? Noooooo, the big boil on Mom's back had to explode while I was there, leaving me gagging and cleaning up...ugh, God, I can't write any more.

That nasty infection turned out to be a very contagious MRSA, and washing my hands in boiling water for 45 minutes didn't keep me from contracting it. It took me 4 months and lots and lots of medicine to get rid of. See, a nurse would have recognized those possibilities, and wouldn't have touched that thing with a 10-foot pole, or at least without rubber gloves.

There has been a giant box of rubber gloves on Mom's counter ever since. I wear them to clean the house, and if she has so much as an inflamed freckle, I'll put them on before poking it to see if it hurts. Rubber gloves are my friend.

Enter then, our latest dilemma:

Hemorrhoids
No graphic appears here.
Do yourself a favor, and do NOT do
a Google Image search for hemorrhoids.
Trust me: There are no "cute" ones.

Super. Wonderful. Couldn't be happier.

Believe you me, I went the route of handing her a Preparation H wipe before resorting to anything that required me and a glove. Alas, certain discomforts weren't being alleviated with a witch-hazel soaked tissue, so I was forced to buy a tube of Preparation H.

Me and Mom

[Censored-censored-censored, I'll leave the details up to your imagination] and then I snapped off my gloves, and said "God, Mom, did you ever imagine I'd be sticking my finger up your butt?"

She said "Well, at least I can still put deodorant on by myself."

Oh, yeah, thank God for that; I sure don't look forward to the day I have to point an aerosol can at your armpits and press a button.

Sighhhh. The thing is that we just do what we have to do, and usually the idea of something is worse than the actual something. When you get right down to it, it's just a butt, big damned deal. I know that someday I'll look back and wish that a little butt cream is all I had to deal with, with my mother. As bad as a day may seem, I know that someday I'll miss that day.

And it's true: At least she can still put on her own deodorant.

Mom's book of baby names...

2010-02-03T12:52:00.000-08:00

Phone call from Mom:

Mom: Hi, I was just thinking something.

Me: What were you thinking?

Mom: If a person had a baby, could they name it Harley?

Me: Sure, they can name their baby anything they want.

Mom: Oh, ok. Well, that's all I wanted.

Me: Ok. Love you. See you when I get off work.

Mom:I love you too. Bye.

Tears in the House

2010-01-31T08:16:00.000-08:00

Mom called me one morning a few weeks ago, and it was obvious she was crying. I waited for her to find words she couldn't. "I am crying" simply would not come to her, so she said "there are tears. Yes. There are tears in this house."

We are very close to her sister, Karla, but unfortunately we're separated by 2000 miles; she lives in San Diego, and though we talk often, we don't see each other as much as we'd like. Mom misses her.

Aunt Karla, teaching Mom to play hopscotch last fall.

They speak on the phone almost every day, but she wants to see her, to hang out with her, to be with her. I found out later in the day that Mom had also called Aunt Karla with the same message about tears. We both tried to comfort her, reminding her that at least there are telephones, and that Aunt Karla loves her very much and that we may get to see her when the weather gets warmer.

She cheered up after a day or two of comforting, some getting her out of the house, and lots of counting our blessings. We do a lot of that: counting our blessings, as we deal with this ugly disease.

But sometimes, it just gets to us, and we have tears in our houses.

Make Me Funny

2010-01-20T18:21:00.000-08:00

I fixed Mom's plate tonight: leftover shrimp & angel hair, from her favorite chinese place, First Wok. While she munched away, I set a bowl of fruit next to her plate, and then a little candy dessert: "Here you go, Mom, some chocolate covered pretzels for a snack, when you're done."

"Chocolate covered puppets?!!"

"Yes, Mom, I'm giving you a chocolate-covered puppet."

She knew immediately that was silly, and started laughing. So happy to see me laughing with her, she said:

"I like to make you funny."

"You make me funny, alright."

It's true. Every day she makes me funny.

Where Are My Square Pants?

2010-01-18T10:27:00.000-08:00

Mom often requests cheeseburgers for lunch, so I recently took her to Burger King. I ordered a cheeseburger happy meal for her, and she pulled this toy out of the box:

"Look, Mom! You got Spongebob Squarepants!" I told her.

Her reply?

"Oh, that's nice. I'll have to put those on when I get home."

Weathering the Weather with Mama Loca

2010-01-13T12:41:00.000-08:00

I hate to keep Mom cooped up in these subzero temperatures, but she does not fare well in cold weather. 40-degree weather brings forth exaggerated shivering and exclamations about how she's freeeeeeezing. She hunches her back and hunkers down like she's battling 100 mph winds, in a 30-foot scoot from the car to the front door of El Toro.

It's been 50-degrees colder than 40-degree weather, and I've been alleviating her cabin fever with an extra hour of my company—woot! I warn her ahead of time: "we're not going anywhere because it's very very cold." She responds "Well, it's nice and warm over here; the sun's out!" "Sun" automatically translates to "warm" to Mom, as does a cloud—a lone cloud in the midst of a blue sky prompts her to predict rain.

After a week, though, I gave in and decided to get Mom out of the house for lunch, meeting up with the familia at our favorite restaurant.

Taking Mom for lunch in inclement weather means arriving to her house at least 40 minutes early. Slippers have to be replaced with boots. She will sit with her feet solidly placed on the floor, and when you ask her to "lift your foot," lean back, or you're likely to get it right in the teeth.

Once her boots are on, she'll walk around complaining about her toe, her toe hurts, this boot is killing her toe. Ask her, then, "doesn't your toe hurt all the time?"* and she'll say "yes it does, and this boot feels pretty good, actually."

Time for the coat. The first arm slides in easily, but the second requires a bit of tackling. she throws her hand all around, pushing it up into the sky, and down. When you hit the brakes, and say "give me your arm, Mom," she put her hand right in your face. "Here!"

Next up: Mittens! Jazz-hands are offered, fingers extended so that no mitten will slide on. Asking her to close her fingers results in making a fist, and still no mitten can be placed. After the first mitten goes on, she pretends it's a puppet, and says "hello, how are you?" and laughs her head off, while you're tackling #2.

Topping her off: The hat! Tug it down over her head, in the interim shoving her hair into her face, which she hates, and pushing her glasses down on her nose, and she can't see.

I adjusted hairs and glasses on Sunday, and asked her, "There, can you see now?"

"You sound like a cat. Now. Nowwwww. Me-oooowwww."

Again she thinks she's hilarious, which she is. She's also, by now, ready to go.

And we trundle out for lunch, where she'll order a salad with grilled ~~french~~... ~~french~~...~~fre~~.... shrimp.

*We don't ignore the toe problem all of the time; The toe is under doctor's care. The toe is getting better.

Speaking Mom-glish

2010-01-11T13:11:00.000-08:00

Communicating with my Mother, these days, although sometimes frustrating, is more often than not fascinating, and sometimes downright hilarious.

When the wrong word comes out of her mouth, she usually knows immediately that she's mis-fired. I am patient with her, and she is comfortable talking to me, so without embarrassment, she'll try again. I give her time and try to help her along without obviously finishing her sentences for her, when I can. 90 percent of the time she can find an alternate word or description. If she wants to go to "the store with the bullet," you take her to Target.

It's heartbreaking, sometimes, to see other's response to Mom's substitutions. I don't know how many times I'll say it here, but Alzheimer's really does freak people out, and I'm in constant wonder at what others must have to deal with, with their own, or their loved ones' physical and mental disabilities. Mom will say something sometimes, substituting one word for another word lost. I wrote in the last post how she used the word "flowers" when "leaves" was hiding for the day. While some people roll their eyes, ridicule, and avoid conversation with a crazy old bat, I find her absolutely, honorably courageous and brilliant for the attempt—and for usually finding a pretty ok substitute. Don't sweat the small stuff people, does it matter if it's a leaf or a flower? The point was that it's beautiful.

There are often some comical side effects to her word choices. Last summer Mom read in the paper about a murder in Champaign, and an "attempted murder" between a jealous couple, in her neighborhood. Agitated, she was, over all of these murders, and I explained them away to her, trying to lighten up the subject. There was no mass murderer in her neighborhood, it was "a mere love triangle" in which a jilted lover tried to run over his ex. A cheerful murder.

Mom got right on the horn with her cousin Mary, and told her all about the crazy events in her neighborhood. The murder! The attempted murder! Terrible, just terrible!

Only Mom couldn't find the word for "neighborhood." So, she substituted.

It was, I am sure, only minutes after ending their phone call that Mary called me in a bit of a panic. Trying to remain calm, she said, "Uh, hey....your Mom just told me someone was murdered in her house...is that right?"

Word Substitution = FAIL

Well, thank you very much for calling, but that information is wrong (Dead wrong, hahaha)....I hoped. Mom's murder report had come in on the ONE day in an entire year that I had arranged for Mom's dinner ahead of time, so that I could tend to other obligations. I got off the phone with Mary and thought, "Great, now watch. I'll go to Mom's house after work tonight, and there will be a dead guy in the living room."

There wasn't, and there's no point in trekking back to Mom and telling her that she misinformed Mary. I did make it a point to clarify, once again, that a crazed murderer wasn't running the streets, hacking up all of the neighbors.

So there we are. I keep a notebook, jotting down the more humorous Mom-isms, and will start incorporating them into my posts.

Learning another language will be good for you.

Acclim8

2010-01-09T18:58:00.000-08:00

Disappearing numbers were the first real sign to me and my sister that Mom's flakiness was a means of alarm. She would call us over, genuinely upset when writing checks to make out her bills. "I know how to write `7,' " she'd say, "but I can't for the life of me remember how to write "teen."

She made the best of it: January 17 would be "January 7teen," and a check for $40 written out "4t dollars and 00/cents."

As it got worse, we changed things up: Teri and I each carried a debit card for Mom's groceries and other shopping, while I took control of her finances and bill paying. Legally. If you're facing a similar situation with your own parents, get an attorney and do it right: Get Legal and Medical Power of Attorney to cover your bases. When it comes time to "force" [hospitals, IRS, cable TV] to give you information that your parents will not retain, you need that piece of paper.

So, great! We got the money figured out, right?

But money was never the issue. Numbers were.

I'll pick you up at 5:00.
Today is January 6.
Microwave for 3 minutes.
40 mph
Take 1 pill every 6 hours day for 10 days.
1234 Main Street
Please call 217-555-1212.
I will be there in 2 hours.
Brian will be home in 11 months.

Man, we need our numbers for a lot more than math, and even when you still have all of your other faculties about you, having them deleted from your repertoire can really jack with your life. What do you do?

You acclimate.

What's today's date? becomes "Tomorrow is Christmas, and we're going to have a big dinner with the entire family!"

I'll be there in 2 hours becomes "I'll call you when I'm on my way."

Microwave for 3 minutes becomes "Hit this button that says "DINNER PLATE" (Circle said button with a big old Sharpie marker. Yes. Get over yourself, and write right on the brand new microwave.)

Drive 40 mph becomes...Driving is long gone, she gave it up willingly after staring at the dashboard and realizing "I don't know where the turn signal is."

(Still, "Want to drive today, Mom?" is a joke that makes us laugh every time "Oh, SURE," she'll say sarcastically, "hand me the keys." We laugh and laugh...while she crawls into the passenger side, hopefully of our own car.)

For other issues, we outsmart Alzheimer's with Gadgets:

2 pills in the morning, and 3 in the evening? Here's a Godsend that only I have the key to, in Mom's house:

Beep-beep-beep, grind grind, rotate rotate, here are your pills, little chicken! No more "did I take this mornings pills? Maybe I should eat some more!" Seriously, I can't remember to take a vitamin a day; if I ever end up with a slew of Rx, I'll be buying one of these for myself.

"If you ever need anything, just call me, Mom," is easy with this gadget. "Just pick up the phone and punch me in the face!" I tell her. My photo is there, along with Clint, Tim & the kids, her sister Karla in California, and cousin Mary.

Don't get your panties in a wad if you're not on the immediate phone list—consider yourself lucky! Remember that numbers/time issue? Seeing 5:00 on the giant digital clock we bought her means nothing to Mom...in the morning.

Neither does the time change from Illinois to California.

Poor Aunt Karla.

Time to Stop and Smell the Leaves

2010-01-05T14:01:00.000-08:00

So as not to turn this blog into its own disease that might suck out your soul if you keep reading, I'm going to throw in a few bright lights. As I mentioned in the first post, we really don't walk around writhing and gnashing our teeth. Mom is still a social person. She likes to get out of the house, go out to lunch, have a picnic, take a walk, go shopping.

I'll admit that shopping can be a bit of a pain these days, and requires stocking up on patience before you head out the door. She's slower than she once was, and has a tendency to, ohhh, wander a bit. And stop in her tracks, to think. If she's in front of you, you run into her, and if she's behind you, you lose her. When you try to get her back on a path, she's likely to turn around in circles a few times before moving on. I have likened a trip to Walmart with her to herding an unleashed cat through the place.

Speaking of Walmart, a few weeks ago, some unsuspecting soul in the parking lot accidentally left the sliding door of their van open. They were parked next to us, and when I told Mom to go ahead and hop in the car and warm up while I loaded groceries, of course she took a seat in the that van. Oh, the squawking that commenced..."Gah! Mom, that's the wrong car! Let's get out, get into this car!" Mom thought this was hysterical, which started me laughing also.

For a more peaceful outing, I try to take her out to places that we'll both enjoy. We went on an Autumn-Leaf Walkabout last October.

She loved it, driving around (well, I was doing the driving), and wandering local parks. She is mesmerized by colorful scenery. Here's a shot of her starting her own bouquet of fallen maple leaves. "OHhhhh," she said, over, and over again...

"Just look at all of the beautiful flowers."

For all of the heartache that is Alzheimer's, I laugh with my mother every time I see her.

Every time.

Thanks for the Memories (Bring 'Em On)

2010-01-05T09:09:00.000-08:00

Mom feeding neighbor's horses, taken October 2009

When you're dealing with something as big as Alzheimer's on a daily basis, you don't always step back and look at the big picture. You simply may not have the time or energy—and if do manage to find time and energy...it is golden, baby, and you're better off spoiling yourself with it while you can.

I am already finding this blog to be comforting and therapeutic, as it's allowed me to connect on a deeper level with other people that remember and love my mother. My cousin Nancy posted this message in response to the first post:

Aunt E____ is a wonderful person. I remember her always being there. If someone was sick or in the hospital or just needing help, she was there and dug right in, no matter what needed to be done. I remember her walking from her home to the hospital EVERY morning my mother was in the hospital, bringing muffins, sitting with us, just being there... It seemed like when she walked in a room everyone sighed "AHHH, E____ is here." I will always respect her gentleness, her calm way, her smile and her love. She is a wonderful person.

This completely bowled me over. I had forgotten.

It's not that I'd forgotten that she used to walk all over creation; or that I'd forgotten that she spent time at the hospital when my Aunt died—or that she spent time with any of our family and friends during times of duress. These things I know, they are memories under the radar, when I don't have time to sit and wax nostalgic.

What I had forgotten—what had flown completely out the window for me—is that other people have their own memories of my mother; memories that aren't mine. Memories I'd never heard of! What!?!

Alzheimer's is isolating. The patient becomes limited by the disease itself, and quite frankly, loved ones freak out over the symptoms and just bow out. With my sister Teri's (my only sibling) illness and passing in September, her family tending to her, my son in the military and inaccessible, my own little world with my mother has dwindled down to...well, me.*

What Nancy's post made me realize is that I, too, have become isolated. My world of taking care of my mother alone has become so focused and miniscule—out of necessity, mind you—that I actually thought I was just about the last person that knew her then

I forgot.

I am reminded that many of you your memories of her that define her life, who she was, and all that she's done. I need your memories of her. I need help remembering who she was.

And she needs your memories of her. I spoke to her last week, and said "Oh, Mom, one of my cousins told me she has the nicest memory of you. She's your niece. Her name is Nancy, and she remembers how you helped her and her brothers and sisters when Aunt Joyce died. Aunt Joyce was your sister-in-law, and you walked to the hospital every day, and hugged them and held their hands, and they love you for that."

You would not believe how happy that makes her, to hear.

So, if you got 'em people, send them to me. I'll post them here, and I'll share them with her. I'll write them down so she can read them, and tell her over and over who she was.

She still needs to know that she's not nobody.

*I do not, in any way, discredit the assistance I get, from my brother-in-law, niece, nephew, my boyfriend Clint, friend Diane, or from friends that have made me promise to ask for help when I need it.

Miniscule First Signs

2010-01-02T09:23:00.000-08:00

Who She Is Now and the path we've taken to get here is the premise of this blog, so this one should be easier, right? However, Who She Is Now hasn't happened overnight; it's been a transition that has spanned 8 years, and I sometimes wonder if there weren't signs of what was to come 20, or even 30 years ago.

I've maintained all along that we were somewhat blinded to the initial symptoms of Alzheimer's as Mom was always—and I say this lovingly—a bit daffy. The woman talked to 2-year-olds all day long for 40 years, for heaven sake, and her adult conversations reflected that fact. We were well into adulthood and a standard conversation with her consisted of topics such as "Look! An airplane!" "There's a train!" "I see a robin!" or "Look at the cows!"

When larger signs began to show, they were often so infrequent and random that the thought of Alzheimer's still never entered our minds. Every 6+ months or so, she'd be tooling along to our house, and wonder, for instance, "Wait—am I on Springfield Avenue or Green Street?"

The millisecond of disorientation would shut her down. She'd pull over and call us, declaring herself lost on the near-straight-shot between her home and ours, one that she'd driven thousands of times.

If I'm going to reveal personal things about my mother, here, and spill ugly truths about Alzheimer's, then I'm going to (wo)man up and spill my own ugly truths: We initially found this irritating as hell. "What do you mean you don't know where you are? You're at Osco! Seriously, Mom, you're just nervous. Take a deep breath, get back in your car, and get over here." I remember Brian, when he was 14 or 15 saying "Why does she do that?"

Once we'd get her back to home-base, she could hop in her car and buzz off to Kankakee to see her own mother, if she wanted to. It was like her mind was a blinking alarm clock after a power-surge: It just needed to be reset, and worked just fine for months after.

The thing is, we all kind of short-circuit every now and again, don't we? Run out for milk, and come home with $30 worth of groceries, and no milk? Say something stupid like "Look at that lady's hat in the car in front of us—oh, never mind, it's a dog." Have you ever zoned out, driven across town, and wondered if you'd run any red lights on the way, because you don't quite remember the trip?

No? Shut up, you have too, don't make me feel paranoid.

They were that miniscule, these signs that were the beginning of the beginning. Small, inconsequential things that everyone is likely to do on an off-day, and nothing to shake two sticks at were the first signs.

Not very comforting, is it?

Who She Was: My Mother, The Enigma

2009-12-30T13:35:00.000-08:00

Who She Was. Hm. I'm figuring out fast that this topic will not be covered in one post. I have to start somewhere, however, so I'll summarize and fill in details as we go; how's that?

My mother was a bit of an enigma. To say that she is quiet is an understatement. Soft-spoken, and shy to a fault: As she loved people, and loved observing and being around them, her quiet manner was often misconstrued as snobbery. I remember many social circles, in our coming of age, where one woman or another admitted that she made an off-putting first impression.

On the other hand, my mother was also creative, fun, and fearless. Any idea was a possibility. Make candles on the stove? We can do it! Grab her daughters and drive to Ohio for the weekend? Let's go! Hop a train! Save a stray dog! Hold a funeral for a turtle! Shove 7 teenagers into her Camaro to get them somewhere—1 more? Sure, we can make room! Walk 6 miles to a restaurant for breakfast? Why not, we have all day. Picnics, swimming, sledding, biking, road trips, garage saling...the woman never stopped.

She was a legendary licensed daycare provider, taking care of as many as the state would let her, often 10 or more in any given day. Yes, TEN, babies, toddlers, pre-schoolers, and after schoolers, in a small, 1100-sq. ft, 3 bedroom ranch home. She was shrewd at running her business, keeping meticulous track of every hour she had every child, every meal, every mile, and every toy she bought, ending up with a stack of receipts and a spiral notebook of records to hand over to the tax man every January.

And she didn't just take care of your kids: She loved them, all of them, hundreds of them. Fiercely. All inhibitions went out the window if one of "her" babies was sick or in danger. I remember one set of naive new parents ignoring Mom's bizarre warning that an odd smell wafted from their child's head. It does sound ridiculous, doesn't it? She finally told them, in no uncertain terms, "you need to get this baby to a doctor." Turns out the infant had been stuffing blanket lint into his nostrils while he slept, and his sinuses were packed with the molding, rotting stuff. Strange but true.

Children were eerily drawn to her. Children she didn't know would reach for her from their shopping-cart seats, twist around in their high chairs in restaurants seemingly just to watch her, and cross playgrounds to hold her hand. I once sat with her in a doctor's office waiting room when a feverish toddler walked over and laid his head in her lap. She would just laugh when my sister and I would kid her, "You're creepy."

Our family photo albums are filled with photos of who she was, beautiful and busy.

Sadly, when the Alzheimer's started kicking in, and mothers began picking up their babies wearing diapers backwards, and onesies snapped on the outside of their pants, they wisely opted to take their children elsewhere. It was heartbreaking for my mother, and despite her advanced confusion since her forced retirement, she still yearns to be around babies.

She gushes when she's around a happy baby or child, and if she hears a child cry, she'll stop in her tracks. I often end up backtracking to take her hand and teasing her, "you want to pick that baby up, don't you?" She laughs, and admits, yes, the poor little thing, she wants to hug it. I tease her, but secretly worry that she'll just trot on over and pick someone's child up someday. I keep a close eye on her.

The children's feelings still seem to be mutual, also. Frugal Mom and I arranged a play date for Mom and her 3 year-old son, in September, and they were both in high-heaven. Mom was thrilled to get to play with and talk to a little kid, and G was equally happy to have an adult's undivided attention, showing her his sunflower house, and how to play in the sand. She spent the next 2 weeks repeating his name over and over, so as not to forget it, and hoarding gifts from around the house to give to him.

It's true that in many ways, my mother isn't who she was, but in many ways, nothing has changed. She still loves fiercely, and aches for others that ache, and she still adores children and would give her life for any one of them.

In matters of her heart and soul, she is definitely the same woman, and has remained iron-strong and steadfast. That's a lot to be thankful for, right now.

We'll take it.

Genesis

2009-12-23T18:56:00.000-08:00

My mother was diagnosed with Alzheimer's just six years ago. She was 61 years old, and had been showing the signs of it for a couple of years. Her initial symptoms happened to coincide with our Father's death, and in the beginning, my sister and I chalked up her forgetfulness and anxiety to grief. In fact, her initial diagnoses two years before was "Anxiety-Induced Memory Loss." She was treated with a mild anti-depressant.

I intend to pay homage to my mother here, to tell you who she was then, and who she is now and I intend to do it respectfully. There are some of you that might take offense to the title of this blog. Alzheimer's is no laughing matter. Alzheimer's is Terrible, and Alzheimer's is Ugly, and Alzheimer's is without a doubt, heartbreaking and terrifying.

But it can take years to overtake one's life, and our lives are all better lived when acknowledging the good times, the humor, the caring, the beauty and the love that exists in those years, right in the midst of the heartache.

We have choices in life. We can grieve over our misfortunes, or we can choose to celebrate the highlights, and rejoice in what we have, and what we have left.

My Mother was an amazing woman.

My Mother is an amazing woman.

She's an amazing woman that searches for the word she knows she's lost, and substitutes another to get by.

She is an amazing woman with her shoes on the wrong feet, and 2 pairs of underwear on.

And I'm pretty sure you're going to love her.