My 24/7 Mama and Zombie Days

mama.jpgMy mother is doing a new thing with her dementia.

A couple of years ago, she stopped eating. It took all sorts of finagling to get her started again. Now, she eats and demands ice cream (which she always tells me she hasn’t had “in years”) in between meals. Yesterday, she asked me how I was doing. “I haven’t seen you in a long time,” she said.

A few months before she quit eating, she stopped drinking water. We had to put her in the hospital a couple of times because she got so dehydrated. Then, we managed to get her going again on drinking water, and now it’s like it never happened.

The new deal is that she won’t sleep. She was up — and me along with with her — all night Sunday night. Just refused to go to bed. All day yesterday she was hyper confused and weepy. But she wouldn’t take a nap and when bedtime came, she flat-out refused to lie down and go to sleep.

I managed to get her down by being very firm with her. I scolded her like she was a two-year-old (which makes me feel like a rat) and told her to lie down and go to sleep. She slept, but I didn’t. I was up until almost four in the morning, and then I didn’t sleep when I finally went to bed.

Long story not so short: I’m taking a zombie day. I had all sorts of things planned that I needed to do, but I don’t think I’m going to do them. My brain is mush and I feel all sorts of jangled and disconnected. I don’t care about anything right now.

This is what caregiving for the elderly can be like when it gets choppy. My mother is unfailingly sweet. The whole time she was up during the night, she was chirpy and jazzed. She kept greeting me with delight and wanting to go for a drive, get ice cream or just chatter.

The bad part was the next day, when the exhaustion left her confused and unable to function. She was in one of those down moods when she knows that her mind is haywire and she feels demoralized because of it.

But as night came on, she started shifting upwards, ready to roll on into dawn again.

I’ve learned that we can get her past these things. Overcoming the refusals to eat and drink taught me that. It takes a concerted effort and lots of imagination, but it’s possible to flip the switch back into place and get her going again. Right now, I’ve got to re-teach her night and day. Odd as it seems, night and day have been an increasing challenge for quite some time.

I’m not sure why, but she forgets that night is night and then gets upset when other people don’t respond to her in what she thinks is the proper manner. She can go for hours, waking you over and over every minute or so with the same request. It’s usually that she wants to get ready to go to adult day care.

I just dealt with it as best I could. But an all night elderly romper room is too much. We’ve got to flip the switch back. I may ask the doc for sleeping pills, if nothing else works. I hate to do that, but, hey, she can’t go 24/7 for very long. For that matter, neither can I.

In the meantime, I hope you’ll bear with me. I’ve got cotton brain.

 

My Drug Addict Family Member and the Witching Hour

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I called it the Witching Hour.

Toddlers melt down at around 5pm every single day. This fact is well known to stay at home moms and other peculiar people who spend a great deal of time with little children.

Just about the time you are up to your elbows in getting supper on the table, the babies start cranking out tantrums, whines, arguments and fights. It’s as if someone put crazy drugs in their afternoon snackies.

Nobody told me about the Witching Hour. Like so much about raising little children, I had to learn it the hard way. But once I got it figured out and took the This-is-gonna-happen-so-put-your-foot-down-and-slide attitude, it became manageable.

I thought I was through with all that when my kids grew out of it.

But I find that I am once again caring for a toddler, and the Witching Hour is back. This particular toddler is approaching 90 years of age and has a random memory of having once been an independent, free-wheeling adult. She remembers that she once paid her bills, balanced her check book and fought all my battles.

She is my mother, and I love her so much it makes my teeth ache.

The Witching Hour evidently applies to elderly toddlers as much as it does baby toddlers. Every day at about 5 my mother melts down. She doesn’t roll on the floor and wail the way babies can do. Her tantrums take the form of hand-wringing anxiety and fear. If she doesn’t find something to hang this anxiety and fear on, I can distract her out of it. But thanks to the the occasional slip-up, or, more often, the family drug addict who has no conscience about ripping off her elderly grandmother, there are days this becomes impossible.

One day this week, my mother found a bill from her latest hospital stay. How she got it, I don’t know. Everyone in the family works at keeping anything that will set her off away from her. We censor her mail by lifting the bills and any advertising that looks like something she might think was a threat (she’s amazingly creative at interpreting advertising as threats) and only letting her see the harmless stuff.

For years, I wanted to end her subscription to the newspaper. Every time they said something nasty about me (there are spells where that can be an almost daily occurrence) she would warp out. I kept telling her that I didn’t care and it was fine, but she is my mother and … well … you know.

Somehow, despite our almost paranoid vigilance, she got her hands on this $35 bill from the hospital. And she warped out. It took forever for me to pry the fact that this was about a bill out of her.

We’re in a horrible mess, she kept repeating. They’re going to take everything. 

When I asked her who “they” was, she would say, I don’t know. 

When I asked her what she was talking about, she would say, I don’t know. 

She cried and begged me to take care of it. PLEASE take care of it. 

I finally figured out it was a bill. My son took it and tore it into tiny pieces, which is pretty much the way we all felt about the thing.

I was so shot by the experience I wanted to go somewhere and just curl up in a little ball. When my mother cries like that, it rips me into as many pieces as my son did that bill.

Then, yesterday, she came to me in tears, almost vibrating with fear. We’re in a horrible mess. 

The house (meaning her home where she no longer lives) is in a shambles. Those people (meaning my drug addict relative) have trashed it and now it’s on us to fix it or the government will tear it down. 

 She was crying as if her heart was broken, and scared out of what remains of her wits. We went through another round of 20 questions and I slowly pieced together that she’d gotten a call from a bill collector over yet another fraudulent bill that the family drug addict has run up in my mother’s name.

The house, so far as I could tell, was fine.

This bill-collector-calling-about-things-the family-drug-addict-has-done-in-my-elderly-mother’s-name-thing happens fairly often.

For instance, about a week ago, I got a call from the adult day care center where Mama goes while the rest of us are at work, telling me that she’d been on the phone, giving out information to somebody. When the staff person took the phone and said this lady has dementia, who are you the caller got snotty with them. I dropped everything and went to the day care center, took Mama’s phone and called the number back.

When I got the caller on the line, they wouldn’t tell me who they were, even though I have power of attorney where my mother is concerned. It’s been a long time since I’ve been that angry. I mean, these people called and hounded an elderly woman who obviously has dementia at her day care center, and then would not tell the responsible party who they were.

After a round of me losing my temper totally with them, it turned out that they were trying to collect a debt for thousands of dollars somebody has hung on my elderly mother. I don’t know for sure, but if this isn’t more handiwork by the family drug addict, I’ll be surprised.

The Witching Hour is so common that the people at the day care center have their own name for it. They call it “sun downing.”

I don’t know if it’s just about end-of-the-day tiredness, or if there’s some sort of hormonal change that occurs in our bodies at that time of day. All I know is that people at both ends of life get upset and bothered around 5pm.

If there is no call from a bill collector or threatening advertising or some paper bill that slipped into her hands by mistake, my mother just tends to spin webs at this time of day. She’s cranky and she wants what she wants, which is my attention. But she doesn’t fall apart on me.

However, if anything slips through the net we put around her, she goes out on us.

The family drug addict’s parasitical behavior is by far the most difficult for me to tolerate. Everyone else in the family works together to care for and protect my mother. Then we’ve got the family drug addict out there, trying to prey on her and actively hurting and upsetting her.

I don’t know exactly why I’m writing all this. Maybe because I am worn slick with it today (I’ve had two really emotional Witching Hours back to back.) and I need to talk about it.

I do know this, and it’s a surprise to me to learn it. Taking care of an elderly parent is, if it’s a family enterprise and you have wonderful services such as Adult Day Care, surprisingly do-able. But when one member of the family decides to become an extra burden, they can wreak havoc.

I am privileged to be able to take care of my mother. I am also blessed to have sons who, even as young men in their twenties, are completely willing to care for her, too. I see them do this, and I feel vindicated as a parent. I raised two wonderful, loving men.

As for the family drug addict, I am at my wit’s end.

2013 Favs: Mama

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Mama, out on the town at her favorite hamburger joint. She made the bead necklace she’s wearing at Adult Day Care — her “Job.” 

My mother smoked like a diesel for almost 70 years.

I guess she was lucky.

She didn’t get lung cancer. She never had asthma. But at the ripe old age of 85 or so, she developed COPD.

I’d heard of this disease, which, nearly as I can tell, is basically emphysema with complications and a larger understanding. But I didn’t know a lot about it. I have to admit that now that I’ve been the caregiver for someone who has it, I still don’t know a lot about it.

Extreme old age is tricky.

People this age have an overall feistiness that, when it combines with the lack of memory that goes with dementia, means they can fool you. One of my worst memories of care-giving was the time about a year ago when my mother almost died because I thought that making an appointment with the doc and taking her in the next day would be enough.

As I said, extreme old age is tricky.

They can be doing their “I’m ok,” feisty act one minute and gasping for breath the next.

We’ve had several close calls in which we had to literally pick her up and carry her to the car, then drive the few blocks to the nearest ER (if it had been further, I would have lost her.) But that day was the closest of close calls, and it was, as these things always are if you don’t act quickly enough, complicated by other problems.

Extreme old age is tricky.

Everything in the body is worn out and running on habit. When one thing (breathing) goes wrong, then the old heart starts to beat funny, and when the heart starts to beat funny, the lungs get cloudy, and when the lungs get cloudy, the heart stops being able to do its job, which somehow or other craters into kidney failure.

All in a matter of minutes.

If you don’t get it stopped at the breathing is getting difficult point, it’s like taking that first step out the hatch of the airplane without your parachute. It can take days to get her back ticking again.

That particular night, it was hours of ER close calls and docs who told me they didn’t “like the looks of it” followed by a week in the hospital.

Then Mama came home, feistiness fully intact, and thanks to no-short-term memory, blissfully unaware of most of what had happened. But I remembered. For a while after that, I was taking her to the ER if she coughed twice.

Extreme old age is tricky.

And the primary care-giver is also the first diagnostician. I make a lot of medical calls for my mother, including the all-important when to go to the doc or the ER. That’s dicey for the simple reason that I don’t know what I’m doing. I’ve never dealt with this oddball combination of small child skating along on the ice in an 88-year-old body before.

And she is a small child.

A pampered, spoiled, demanding small child.

The further she gets into the dementia, the more childish she becomes. For instance, she loves for me to take her out for drives.

She loves for me to take her out for drives frequently. In fact, I think she would be happy to have me chauffeur her around all day, every day.

If I’m working on something, she says, “I want you to take me out for a drive now.”

I say, “I’m busy. We’ll do it in a few minutes.”

She looks at me almost exactly like the actor pretending to be a toddler demanding a cookie in Convos with My Two-Year-Old, and repeats “I want you to take me for a drive now.”

She doesn’t quit until I give up and do it.

She goes to Adult Day Care every day. I am going to write in more detail about Adult Day Care. It is a wonderful program. She loves her “job” as she calls it.

She loves it so much that she gets up about 5 every morning and starts announcing that it’s time to “go to work” and she’s going to be late. You can’t turn her off. It’s. Every. Morning.

Even though she loves Adult Day Care, she has a very short attention span. If there’s a lull in the good times, she’ll call me and tell me to come get her. Sometimes, she’ll announce that everybody is just sitting around doing nothing and she wants me to come get her. I remember once when I called the Director of the Day Care Center and told her Mama had called and I was coming to pick her up and she said, “You don’t want to watch the dancers, Mary?”

There were dancers, getting ready to perform, and my elderly toddler got tired of waiting for them to get with it and called for me to come get her. If I’d gone over there, she would have gotten miffed because I stopped her from “having fun” watching the dancers.

If the “I’m bored,” explanation doesn’t move me to come get her, she’ll tell me she’s sick. I always go when she says she’s sick. I don’t have a choice, since there’s no way to know if it’s real or bluff.

In fact, I got one of those calls just a few days ago. Obedient daughter that I am, I drove over, parked the car, went in and got her. As I was guiding her and her cane/jacket/stuffed animal-she’d-won/painting-she’d-made to the car, she told me “I was having fun.” It seems that between the sick call and when I got there, the staff had gotten the fingerpaints out and Mama had gone from too sick to stay to having too much fun to leave.

On the last day of May, the whole town was under threat of the widest tornado in history. As our family gathered around the tv to watch what was happening and decide what to do, Mama kept talking.

She does that.

Talk, I mean.

Non-stop. Just like a toddler. You can’t really have a conversation with her anymore, but she rattles non-stop as long as she’s awake.

I usually just un-huh her the way I did the kids when they were babies.

But we needed to hear the tv.

“Hush,” I told her.

She paused for a beat, then started in, talking about one of the lamps or something.

“Mama,” I said, waiting until she stopped chattering and looked at me, “Hush.”

She stared at me a moment, then turned away. “Well alright. I guess if I can’t say anything, I’ll just be quiet. I don’t know why I can’t talk. But if you want me to just sit here and not say anything, then, I’ll shut up. If that’s what you want, then I guess I’ll have to do it, but I don’t see why I can’t talk

“…

“sigh

“…

“That lamp shade is crooked. Or maybe it’s made to look like that. No. I think it’s crooked. Mary Belle had a lampshade like that. Only hers was pink. Or maybe it was purple. I want you to take me for a drive …..”

We give her the medicine she’s supposed to have. Then, we watch her swallow it. Otherwise, (for reasons I do not know) she will hide it behind her bed.

We hide her medicine so she can’t find it. Otherwise, (again, for reasons I do not know) she will decide she’s not getting enough and upend the bottle into her mouth.

I give her money to take with her to her “job.” But I can’t give it to her too soon because she will hide it, and then she’ll forget that she hid it and tell me somebody stole it.

She gets lost in the house.

She tells everyone that I “stole” her car from her.

And to this day, if I needed a heart transplant, she would say, “Here. Take mine.”

My Mama. My sweet, baby Mama.

I love her so much it makes my teeth ache.

It is no burden, taking care of my Mama.

It is a blessing and a privilege. I cherish every day with her.

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Having a Mama Kind of Time

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I’m having a Mama kind of time.

My 88-year-old mother goes through phases. It took me a while to figure out that these were phases, rather than permanent situations. I don’t know what causes them, and I don’t know why they end. But I do know that while they are making their passage I have a hard time balancing with them.

This latest phase is, “I don’t know what to do.”

Here’s how it works.

11 pm

Mama: I don’t know what to do.

Me: What do you mean?

Mama: I don’t know whether they’re picking me up for my job (adult day care) or what.

Me: They’ll be here at their regular time. You just need to go to bed and get some rest so you’re ready to have fun tomorrow.

Mama: Well … OK. But I don’t know what to do.

11:30 pm

Mama: I don’t know what to do.

Me: What do you mean?

Mama: I can’t remember.

Me: It’s Ok. Just go back to bed and get some sleep and it will be ok tomorrow.

Midnight. 2 am, 3 am. 3:30 am, 4 am, and on until she leaves for Adult Day Care

Mama: I don’t know what to do.

Me: What do you mean?

Mama: I’m afraid they won’t pick me up for my job (adult day care) on time.

Me: Don’t worry. I’ll take you if they don’t pick you up. Now just go back to bed and get some sleep.

9 am

Driver for Adult Day Care: Your mother has been calling me since 4 am, wanting me to come pick her up.

2 pm

Director at Adult Day Care: Your Mother called us every few minutes from 5 am on, wanting us to come get her.

3 pm

Mama: I’m home now. I want you to come take me for a drive.

Me: I’m so tired.

Mama: Oh sweetie, you need to stop working so hard and get some sleep.

Me: Yeah. You’re right.

Mama: Now, I want you to take me for a drive.

If I sometimes seem grouchy, absent-minded or just plain goofy, remember this and cut me a little slack. It’s just a phase. It may go on for days, weeks or months, but at some point, Mama will start sleeping through the night again and she will be blissfully unaware that there ever was a time when she didn’t know what to do. I don’t know exactly how it happens, but it does.

This last slow walk with Mama is a surprisingly beautiful time with its own surprises and profound touches of grace. Even when I am groggy and nauseous from lack of sleep, I am still glad that I have her. Contrary to the nonsense our culture teaches us, it is a gift to be old and full of years, both to the people who live it and to the people who take care of them.

Everything I ever needed to know about love, I learned from my parents. I am fortunate indeed that my Mama, even as she wakes me up to the beat of her own internal metronome, is still teaching me.


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