New Life

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.

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

(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...

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!

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?

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

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.