Lord Carey, the former Archbishop of Canterbury, and Walking Mama Home.

Mama last May. Believe it or not, her appearance in this photo seems robust to me now. Copyright Rebecca Hamilton. All Rights Reserved.

Mama last May. Believe it or not, her appearance in this photo seems robust and sharp-witted to me now. Copyright Rebecca Hamilton. All Rights Reserved.

Mama seems better the past couple of days, but she is hallucinating, which means no sleep for me.

I’m sorry I’ve been so slow to come back to blogging. I’ve been going minute-by-minute on Mama care, and when I get a moment, I usually crash.

I did take a few minutes to write this post about Lord Carey’s advocacy for euthanasia, as well as one of the tougher moments I’ve had with Mama since I brought her home from the hospital.

I’m asking for prayers all around, my friends. Pray for me, as I find that the exhaustion is undermanning me seriously. Prayers for Mama. And prayers for our world that is so in love with the culture of death.

I’m going to do my best to blog more this week. But if I can’t, know that you are in my prayers.

From the National Catholic Register:

Mama slipped through my hands.

It was as if her bones were strands of boiled spaghetti, as if she was liquid rather than solid.

I fought the fall all the way down.

She landed in a sprawl against the oxygen machine, her head wedged between it and the portable potty. “Ohhhhh,” she moaned. I tried to lift her, but those spaghetti bones and her little bit of weight were too much for me.

The master bedroom, where my husband was, is all the way across the house from where Mama and me. I yelled for him to come help me. Yelled again and again. Yelled so loudly that my throat strained.

He didn’t hear me.

I left her there and ran to the master bedroom, yelling his name as I went.

He was able to lift her from the floor, and back onto the bed. Meanwhile, I collapsed on the small sofa at the foot of her bed. Throughout the last week, from her first collapse into unconsciousness on Tuesday night, all through that long night in the ER, and then through her rousal the next day and lapse back into deep sleep from which she could not be awakened … a sleep that lasted for four days … I never cried a tear. I couldn’t cry. My eyes were dry and I just kept going, one foot in front of the other foot.

But when my husband lifted Mama from the floor and put her back on her bed, I sank onto the sofa at the foot of her bed and broke into great, gasping sobs. I cried until the muscles in my chest hurt from the exhaustion of the sobbing.

Meanwhile, Mama, half conscious, kept mumbling something. I got up and sat on the bed beside her, but I still couldn’t make out what she was saying. I leaned forward until my ear was almost touching her lips.

“It wasn’t your fault,” she said.

Read more: http://www.ncregister.com/blog/rhamilton/it-is-a-great-gift-to-carry-the-cross-of-someone-you-love/#ixzz3j5fxj56d

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It Was a Mama Kind of Night

Copyright: Rebecca Hamilton. All Rights Reserved.

Copyright: Rebecca Hamilton. All Rights Reserved.

Caring for an old person is a little bit like driving a car with 300,000 miles on it. You never know when it’s going to break down, or in what weird way it will do it.

Last night was an example of this. Mama passed out on us in a 3-2-1-lights-out sort of way, and then she stayed passed out. My oldest son and I spent hours in the er beside her bed while she was off wherever it was that she’d gone and the medical staff tried to figure out what was happening.

Then this morning, she woke up like an old car that wouldn’t start yesterday but today kicks over as if nothing had happened. She’s still in the hospital, and I’m glad to have her there. She needs the care, and we need the help.

I wrote about it for the National Catholic Register.  Here’s a bit of what I said:

Old people — and by that I mean very old people — are funny.

They’re not funny in the sense of laughs. They’re funny in the sense that you never know from one moment to the next what’s going to happen.

Caring for a two-year-old is a piece of the proverbial cake compared to caring for a 90-year-old with dementia. My family and I have been doing our best to care for my 90-year-old-two-year-old for years now.

Her dementia started when she was in her high 80s. It was a late-comer to the aging party, but once it arrived, it went through her brain like a laser, cutting away pieces with every pass. Dementia never stops taking. It is an aggressive and remorseless beast that slowly, but inevitably, lops off chunks of the person you love.

Mama is my baby now, complete with diapers and the sudden medical crises that go along with the physical declines of extreme age. A 90-year-old going on eternity can slide straight down from doin’fine and being a pest to the brink of forever in one, breath-taking step.

Consider last night.

What we had was Mama, prattling along with her nonsensical word-salad talk-talking while changing into her night gown. With no warning, she stopped talking and slumped forward.

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We Need Caregiving for Caregivers of Parents with Dementia

Copyright Rebecca Hamilton. All Rights Reserved.

Copyright Rebecca Hamilton. All Rights Reserved.

A few days ago, I had someone praise me for my “witness.”

This person was referring to the fact that my family and I are taking care of my elderly mother. I wanted to interrupt this person and tell them the truth of it, which is that my “witness” is shot full of holes.

Caregiving for an elderly person with dementia can seem like a piece of cake early on in the process. But as it progresses, and more of their brain switches off, it becomes increasingly fraught.

On top of that, I keep getting sick. Not, terrible sick, but bad enough to suck all the life out of me and make every day feel like a march through knee deep mud. I’ve had two colds in two months. Colds aren’t much of anything, unless you’ve got asthma. But put a cold together with asthma and no sleep and all the rest of my life right now and you’ve got a recipe for lungs that just won’t work.

That’s what happened in March. I somehow did not get pneumonia, which the doc assured me was what happened to most folks. But I did get such a bad case of on-going, never-stop asthma that, as he told me, “Your lungs aren’t moving air.”  Enter the miracle of antibiotics and steroids, and I got all healed up and back in the race again.

Then, along came another cold. It sent Mama to the er last week. Now it’s gone down into my lungs and formed an alliance with the asthma. I’m probably going to have to do the antibiotics/steroids all over again.

Why am I telling you this?

Because I want you to understand that my “witness” is a weak and faulty thing. When I’m lying on the sofa, coughing and hacking, I’m not exactly doing a good job as a caregiver. Mama, who can no longer follow a book or a plot on tv, and so is no longer amused by either books or tv, demands constant amusement.

When I’m sick, I can’t do this. Instead of working with her to keep her wound up and moving, I end up letting her sit on the sofa like a zombie, or I send her to her room where she falls asleep. That’s not good care of someone with dementia. But it’s all I can do when I’m sick.

I’ve never resented the spring storms the way I have this year. They set off my arthritis, and somehow or other the stress with Mama seems to make that worse. Plus, I feel the weight of taking care of her in a storm in a way I never felt the weight of taking care of the kids when they were little.

Compared to her, they were ez pz. When they were very small, I just picked them up and did what needed doing. When they were full-on kids, they did what I told them in difficult situations without argument.

But Mama is a never-comprehending rubics cube. She trusts me and will do what I ask of her. But if I’m not there, she fights whoever is trying to help her. That adds a dash of salsa to the storms that, for some reason, seems too much.

That’s what I’m dealing with right now: Too much. It’s all too much. And I’m not sure why.

I think I’ve solved the doctor thing. I simply went on a doctor hunt, and it turned out that I landed on the right square early on in the search. The doc and the staff at the er last week were kind, and they understood my situation almost without my telling them. That was a blessing.

Everything is do-able. Today.

That’s the only promise a caregiver for someone with dementia has: Today. Or, maybe not even today. It may end up that all you know is that things are going good right now. In an hour, it can change, and you are dealing with a full-on hallucination or making a fast trip to the er.

But for today, for this minute, I have loads of help from my kids, and Adult Day Care, and I have prescriptions that seem to be working with Mama and my only problem is that I Do. Not. Want. to go to the doc myself.

I would rather eat dirt than go spend another $160 at an urgent care place to get a script for antibiotics and steroids. But I know that primary care docs with their $20 copay take about 3 weeks to see you, and this isn’t worthy of an er (which is much more miserable than going to an urgent care facility, anyway) so, I have to do the $160 do to get a couple of scripts that, to be honest, I could write myself.

See how I whine? See how negative I’ve become?

That’s what I’m talking about when I say my “witness” is less than shiny bright and pretty.

In truth, Mama’s dementia is doing at least as bad a job on me as it is on her and I can’t figure out why. I hit some sort of wall when she stopped sleeping at night. I know part of that wall was simple exhaustion.

One of the two hardest nights of her dementia so far was last month, when I was sick and she would not stay in bed. I felt so lousy, and she was up and roaming and had to be managed all night long. Before these new meds, she argued with me and refused to go back to bed and had hallucinations that terrified her and made her unmanageable.

That night was about 30 years long, and the next day, I was so sick I had to get medical help for myself.

Then, when we put her in the in-patient diagnostic and she just slept through the night and didn’t do any of this for them so they could help us with it, I hit some sort of despair point. I cried for days and couldn’t stop crying. We finally managed to get a script that actually does help, that not only lets her sleep at night but clears the hallucinations.

Things should be all better now. In fact, they were looking up, then we got this blamed cold. The high wire act of dementia care is such that something as simple as a cold can cause everyone to fall off and into the net. That’s what’s happened to me.

The thing I hang onto is something a man whose name I never learned told me years ago. I taught a class at Youth With a Mission in Hawaii a few years back. It was a glorious experience, spending an entire week in that beautiful Christian environment. Everyone I talked to was a spirit-filled, all-in Christian who wanted to change the world for Christ.

One evening, I was sitting out, watching the sunset, when a man with a baby joined me. We got to talking and he told me the story of how he came to adopt this baby. Long story short, the baby had no one, and he was reluctant to take on raising a child at his advanced age. But when he and his wife did adopt the baby, the child blessed their lives with love and wonder as only a baby can.

“God only wants to bless you,” he told me.

I keep thinking of that comment when things are difficult with Mama. “God only wants to bless you.”

I believe that, and I know it’s true of me and my situation right now. Mama has been a blessing to me all my life. Seeing her home is not a punishment. It’s a gift. A blessing.

That thought is what dries my tears and pulls me back out of despair. I write these blog posts as unsparingly as I can because I think that as a society we need to face up to the fact that we not only abandon our elderly, we abandon their care givers.

Care for people who have dementia is a act of life and love. It is pro life for real. Euthanasia, which is being pushed as an “answer” to dementia and a “relief’ for caregivers, is satanic. It is from the blackest pit of hell.

What we need to do as a society is take off our blinders and help people who are caring for their family members with dementia. We need something like the Rain Teams that Christians once formed to help people with AIDs, only for families who are caring for loved ones with dementia.

Care of the care-giver is a forgotten piece of the equation of caring for our elderly. I can tell you that as the dementia gets worse the caregiver begins to need love and support every bit as much as the person they are caring for.

My “witness,” such as it is, is a call for us to do better. It is not a “witness” of my heroism and perfection. It is, rather, a witness of my weakness and failures. I am not a cheerfully self-sacrificing saint. I am everyman and everywoman, just muddling through and hanging on and falling flat and getting back up.

I do not fall into raptures of grace when I am dog tired and at my wit’s end. I sit down and cry. I am not always reasonable. I do not always do the right thing.

I am you. And me. And every one of us.

That, and not some idea of perfection, is my witness. It is why I can say without equivocation that caregivers of elderly parents with dementia need help. They need love. They need comforting and support.

The Lord only wants to bless us. And the first blessing comes from His command that we “Love one another.”

All His blessings are blessings of love and life. Seeing Mama home is a blessing of love and life. If we rise to this challenge that I am making and will continue to make, and help caregivers of people with dementia, we will be blessing ourselves and one another with love and life.

I write about Mama with as much honesty and raw reality as I can. The reason is that I am issuing a call. I am calling Christians to formulate means to help caregivers of people with dementia in the simple, human ways that they need help. Put life and love back in their days of chaos. God wants to use them to bless you.

All God ever wants to do is bless each and every one of us. And the first and only true blessing is love.

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Every Minute is an Hour When You’re Waiting in an Emergency Room

Copyright Rebecca Hamilton. All Rights Reserved.

Copyright Rebecca Hamilton. All Rights Reserved.

If you want to feel like your life lasts forever, spend it waiting with a sick parent in an emergency room.

Every minute in the er is an hour, every hour is a day, and the days are as close to eternity as we will get in this life.

I spend quite a bit a time in emergency rooms with my Mama and her breathing problems. I’ve done enough of it that I have my fav ers and my ers that I avoid.

An emergency room staff and their fine potions can get the old lady pumped full of steroids and other goodies that will set her breathing back on course again. The docs range in quality from the indifferent and nearly incompetent to the kind, caring souls who go the extra mile. Ditto for the nursing staff and intake people.

Last night was an emergency room night for me. I had one of those eternity-long evenings sitting alone with Mama through hours of waiting, excellent treatment that got her going again followed by an exhausted, tossing and turning night that was more worrying about her than rest.

Today, I’m tired. I mean tired. Not only did I do the emergency room do, but I’ve got the same cold that shut her down and sent me to the er with her in the first place.

We’ve all got that blamed cold. The whole family. We’re grouchy and tired. But she’s got 90-year-old-I-smoked-since-I-was-17 lungs. It’s known as COPD, and it works a treat with a cold, turning an ordinary blow and cough into an I-can’t-breathe crisis.

I am, as I said, tired. Too tired to think. What that means to you, my friends, is that any blogging I do will be later in the day.

After.

After, I give the emotional part of this tired a chance to roll off me, and after I regain a bit of my oomph. If I stay oomph-less all day long, then I doubt I’ll write.

Right now, this morning, I feel like my brain is wrapped in cotton. At this juncture, I do believe that Mama is friskier than I am.

Go figure.

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When It Comes to Caring for Your Parent with Dementia, You are Alone.

Photo Source: Flickr Creative Commons by Sohel Parvez Haque https://www.flickr.com/photos/sohelparvezhaque/

Photo Source: Flickr Creative Commons by Sohel Parvez Haque https://www.flickr.com/photos/sohelparvezhaque/

Before I do anything, I want to thank Public Catholic’s readers for their caring and kind suggestions and ideas about my problems with my mother’s dementia. I am in the process of following up on several of them.

You folks are the best.

Next, I want to apologize for going dead silent on you the past couple of days. My personal situation drug me down too far to write. But I’ll be back. I just needed time to deal with my own emotions.

I had a big tubful of hope when I put Mama in the hospital for an in-patient diagnostic. I thought that they would see the problem and come up with something to help my mother — and me — sleep through the night. The quickie convo with the doc Monday dashed those hopes to the ground. Help ain’t coming.

I’ve spent the past few days living in dry-as-dust land. My heart, my head, were full of dust. Maybe the reason I was so dusty is that I cried so much; tears of anger, tears of despair, tears of grief. I prayed and prayed. Then, I went through the angry phase, and again, I prayed and prayed.

Now, to use a phrase from my horsey days, I’m at the point where I can sit down in the saddle and ride. Sometimes, to paraphrase Robert Frost, the only way out is through.

Here’s a quick take on my feelings right now about what people face when they are trying to care for their parents.

First, we do not get any information from our docs. By that I mean that the only things I’ve learned about Mama’s medical situation have come from reading on the internet and attempting to diagnose her myself. Here’s a list of the information I’ve gotten about dementia, what to expect and how to handle it from our medical practitioners:

 

 

Did you hear the crickets chirping????

Now, here’s a list of the medical help and advice I’ve gotten about dealing with Mama’s many symptoms, including hallucinations, night terrors, etc:

 

 

Again, did you hear the crickets????

We once had a family doc who took a history, listened, and explained. This enabled her to treat Mama appropriately, and allowed us to take care of her at home. I had no idea at the time that this level of care was totally unique. When she retired, I began going from one doctor to another, trying to find someone who would replicate this level of care.

I’ve read a lot literature about dementia that comes out with this statement: You are not alone.

This is untrue. People who are trying to care for their parents with dementia are completely, absolutely alone. Unless they have a lot of money — and I mean a lot of money — the solutions that are offered to them are to (1) Warehouse their elderly parents in a medicaid nursing home where they will be left in bed all day and ignored, or, (2) Euthanize them.

This last is a real annoyance to me. Every time I write about my mother, some dirt bag tries to leave a comment advocating euthanasia. Every. Single. Time. The effect this has on me is to harden me toward people who advocate euthanasia. It also illustrates just how low we’ve fallen as a society.

The solution to this problem is not to warehouse people with dementia in sub-standard nursing homes with inadequate staff and a don’t-care attitude. I will also add, because it appears that I have to, that murdering them is also not a solution.

Euthanasia, death with dignity and all the rest of that rot are just nice names for murder.

If we spent a fraction of the effort advocating for help for people who are caring for their elderly parents with dementia that we spend on trying to pass laws to kill our elderly, we could solve the problem. Much, in fact most, of the problem lies with the medical profession.

I’m not sure when it happened since I’m healthy enough not to need much medical care, but we’ve arrived at the era of match-the-database-to-the-lab-results medicine. It seems that docs today don’t diagnose, they collate. The patient is totally secondary in their considerations.

Here’s an example from my past dealings with medical professionals. My husband and I took a weekend trip to Dallas a couple of years ago. I left Mama with the kids. She got sick and the kids took her to the er. The er doc ran a lot of expensive tests, including a cat-scan, said there was nothing wrong with her and sent her home.

I got a call in Dallas from that good ‘ole family doc — the one who took histories and listened to her patients — telling me that Mama had left a confused message with her answering service. I headed home to find Mama in desperate straits.

I took one look at her and knew what was wrong: She was dehydrated.

Me, with my master’s in business, did a better job of diagnosing than the doc in the er with his medical degree and all his tests. Why? I did something he evidently never considered. I looked at her.

This particular episode was the beginning of Mama’s won’t-drink-water spell. It was a little slice of hell, getting water into her.  We had to work with her and work with her to get her to drink. Then, for reasons unknown, she started drinking again and we haven’t had that problem since.

She went through a similar period where she wouldn’t eat. We got her though that one, too.

Now, it’s night terrors, hallucinations and what I gather from reading on the internet is called “sundowning.”

I called a lot of docs this week, including several neurologists. It turns out that neurologists won’t see you unless you’re referred by another doc. One neurologist’s appointment maker told me that princess doctor wants all her patients to have an MRI and about a gazillion other expensive tests already done and in the chart when she meets them.

Think about that. This is many thousands of dollars worth of tests that she’s demanding without so much as knowing the patient’s name, sex, age, symptoms or anything about them. If that isn’t trying to diagnose by test, I don’t know what you’d call it.

What these folks don’t see is that medicine is more than collating test results with a database of illnesses. A computer can do that. In fact, can do that. I have no medical training, but I’m plenty smart enough to collate databases. Medicine involves a serious interaction between doctor and patient that these docs have evidently been trained to avoid.

Without a full history and an exam that includes listening, not just to what the patient says but how they say it, without an application of actual clinical knowledge and skills that come from observing, listening to and treating real live people, medicine just doesn’t work.

If docs won’t believe what their patients tell them, then treatment is reduced to what can be replicated in lab tests or in front of the doc. If you have gastroenteritis, do you have to throw up in front of the doc to get something for nausea and vomiting? That’s where we’re heading. In fact, dementia patients and their caregivers are already there.

The danger of relying on tests alone is multifarious. First, as in the case of my mother’s dehydration, the doc may not order the right test. Second, without a history and an exam, the doc may not know how to interpret the test even if he or she accidentally orders the right one. Third, not everything shows up on a lab test. Fourth, even if the doc gets the right result — which is somewhat akin to throwing darts at a wall and hitting a bull’s eye, the patient is out of the loop. With long-term illnesses, the patient must be in the loop to get a good result.

Database collation medicine, or paint by numbers medicine, works very well most of the time. There are reasons for this. First, with most ailments people eventually get well on their own, even if the doc misses the diagnosis entirely. Second, the majority of aliments that people show up at their doc’s office with can be treated with a broad spectrum antibiotic and maybe something for discomfort.

In other words, most of the time, the doc doesn’t have to know what’s wrong with the patient. They can claim a victory just by prescribing a broad spectrum antibiotic and relying on the inherent resilience of well-fed, comfortably-housed Americans.

If things go past that 1, 2, 3 doh-ray-me level of medicine, they refer to specialists who provide a second layer of paint-by-numbers medicine.

The trouble in all this lies in the fact that when a patient gets really sick with something that requires a bit of actual medical practice, today’s docs appear to be utterly lost. They have a few buttons they push, labs they order and standard things they do. When it gets past that, they’re not much more use, and not more personal, than the internet.

What I’m trying to say is that if you get something really weird, you’re going to have to diagnose yourself. If you get something that’s not at all weird, that’s expected even, but that is complex, like, say, dementia, you’re going to have to treat yourself.

I’ve spent this week being down in the dumps for one simple reason: I was coming to the realization that my family and I are on our own with my Mama. We’re going to have to figure this out and provide the care that gets her through this, and we are going to have to do it ourselves.

Because the sloganeering claptrap out there is a lie. When it comes to taking care of your parent with dementia you really are alone.

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Mama

Copyright: Rebecca Hamilton. All Rights Reserved.

Copyright: Rebecca Hamilton. All Rights Reserved.

We had a family discussion last night. The upshot was that the time has come to consider putting Mama in a nursing home.

That’s what the family members I love told me. Their verdict was simple: You will kill yourself, taking care of her.

I, being Ms Reasonable, let them talk me down. I insisted on a delay, but agreed that, by the end of summer, I would find a place for her.

Then, last night, I sat up and googled nursing homes. I read the laws that I helped write, perused the regs that came from them. I plowed through the patient responses and the details of the inspections of these places.

There is a good place just around the corner from my house. It specializes in caring for people with dementia. It has a great patient-staff ratio. There are only four patients in each unit and a staff of 8 to care for them. The people there are happy.

And I could go get her and take her out every day. We could bring her home for dinner and keep her as part of the family.

I would put her there in a heartbeat. She would be happy there, and that’s what matters.

But it costs over $80,000 a year, out of pocket. My pocket.

Mama’s grandfather lived to be 101. Her family is full of people who lived into their high nineties. I may have her for a long while yet. I don’t have the money to put her in this good place where she would be happy. I just can’t do it.

The Church runs a nursing home that everyone, including the residents, says is a good place. But it is, pardon my language, to hell and gone from where I live. I couldn’t go get her and take her out every day. Or, if I did — which I would — it would involve driving almost 40 miles each way, right across the heart of the most densely populated area in the state. A daily visit would take half a day. Every day.

There is no other place that I can afford that I would consider for my mama.

So, I decided I would call and get her a place in the Catholic nursing home and spend the rest of her life — which I hope is long — driving for half a day, every day.

Then, even as I made this decision, I undecided it. I thought of her fearful reaction, her heartbreak at being put in a strange environment. I thought of how far away from me this place is. I thought of her, of who she is.

And I undecided to make that call.

“If it kills me, taking care of her, then I guess it will kill me,” I said aloud to the empty room. Then I prayed and handed the whole thing over to God and went to bed.

My husband went to early mass Sunday. I stayed home with Mama. He came back with a big bag of donuts. She loves donuts.

She was eating what I think was her third of fourth donut while I sat at the table with her, listening to her prattle.

“Are you any relation to me?” she asked, and took another bite.

“I’m your daughter,” I said.

“Oh,” she said, and reached for another donut.

Her daughter. That’s what I am.

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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.

 

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Book Review: The Way We Were

To join the conversation about The Geography of Memory, a Pilgrimage Through Alzheimers, or to order a copy, go here

 

The Geography of Memory a Pilgrimage Through Alzheimer’s, is a personal memoir, written by a woman whose mother died at the age of ninety after a long slide downward into dementia.

Jeanne Murray Walker writes about growing-up in Nebraska during the 50s against the backdrop of her mother’s slowly worsening dementia. She describes her efforts to participate in her mother’s care, despite the fact that she lived half-way across the country from her mother.

Caring for a dying parent seems to rip open the seams on the bag of memories we all have inside us. I experienced this when my father was dying. Things you thought were lost in the fog of time step out of the backdrop and present themselves to you, complete and fresh. I suddenly remembered my father as he had been when I was a tiny girl. I saw his face, heard his voice from back then. The experience taught me that we don’t forget. We simply file away and lose as the detritus of our daily living piles itself on top what happened back when.

Evidently, Mrs Walker experienced something like that when her mother was sliding down. This book is the result of those awakened memories from her life, built around the backdrop of her mother’s slow leave-taking.

Mrs Walker’s mother was a magnificent woman. She was one of those kind-as-Christmas, tough-as-a-Missouri-rail-spike fundamentalist Baptist women I grew up around and have known all my life. The faith people follow shapes them in powerful ways that are reflected in their overall character. It also infuses them with strength and a kind of power that people without faith, or with only a wishy-washy faith, simply do not have.

This woman lost her husband at a young age, and was faced with supporting her three children back in the 50s and 60s, when career opportunities for women were limited mostly to jobs that paid less simply because they were “women’s work.”

Fortunately, she was an educated woman for those years, a nurse. She told her kids that she would never afflict them with a stepfather and pushed on with the business of bringing home the bacon, paying the bills, and, as we say in this part of the world, raising them right. The Baptist church, with its simple theology and rock-ribbed certainties, formed the spine on which she built this life and raised her kids.

When her only son died of asthma, she did not despair. She kept going and going, right through what sounds like a beautiful second marriage after her children were grown and on into an interested and interesting old age.

Her mind began to betray her when she was in her mid 80s and then slowly unraveled itself as she aged into 90. Even though her daughters managed her care and placed her in what sounds like the best care facilities, she basically traversed this path alone.

But The Geography of Memory is really about Jeanne Murray Walker rather than her mother. It tells the story of how Mrs Walker traveled the country in an exhausting round of visits and suffered the pain of separation from her mother during the time her mother was slowly dying. It describes honestly the confusion, pain, anger and exhaustion Mrs Walker felt while doing this.

It also tells the story of what it was like to be raised by this woman. It is a memoir of a time, place and people that could only exist in the middle of America. The rock-ribbed faith and equally rock-ribbed courage of this woman infuse the daughter’s life with a strength that allows her to step out and move on.

This is a familiar story to me. I know women like Mrs Walker’s mother. I grew up around them. I have also seen their daughters’ ability to separate and spread their wings, something that only really great mothers give their children. Read through that lens, The Geography of Memory is as much a book on the lost art of courageous child-rearing as it is a book about the slow declines of old age.

Mrs Walker’s mother was never diagnosed with Alzheimer’s, and I doubt that was what was wrong with her memory. This thing that happens to most elderly people is a slide backwards into childhood and, ultimately, confusion. It’s as if the brain becomes disorganized; a tangled heap.

I haven’t had a family member with Alzheimer’s, but I’ve seen a lot of it in my constituents. The word “alzheimer” has become a catch-all for the various dementias of old age. But it is a specific thing all its own that does not, so far as I can see, only strike the very elderly. My constituents with Alzheimer’s are different from the way Mrs Walker describes her mother. With them, it’s not so much a matter of losing their way to the bank as it is not knowing what a bank is. Over a period of time, they go blank. Instead of being a tangled heap, their brains seem to be hollowed out.

The reason I’m saying this is because it matters in how we treat our older people.

The Geography of Memory is a beautifully written memoir about a magnificent woman and her magnificent daughter. The lessons it teaches are about living far more than they are about dying. Perhaps its sweetest lesson is that the memories of our lives are worth telling.

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My Golden Mama and Her Slow Good-bye

Let me tell you about my mother. 

She is 87 and she gets confused.

She gets confused a lot.

For a couple of years there, every day was a challenge just to keep her alive. We rushed her to the hospital several times so they could drag her back from the edge. Now, her physical health has stabilized, but her mental health is going downhill, a little bit at a time.

She reminds me quite often that I took her car away from her. She’s lost that sense of time that lets the rest of us grieve a loss and then move on, leaving it in our past. When she remembers that she doesn’t have a car, the indignation is as fresh for her as the day it happened. The day I took that car was a sad day for me, too. When she tells me, as she does at least once every day, that I “took” it from her, it re-opens the pain in me, as well.

Other than the car memories, my mother is as sweet as a small child. She accepts whatever I suggest as the best thing and she trusts me the same way my children did when they were little. Like them, she talks almost non-stop, prating along about things that happened, or didn’t happen but that she thinks happened, 60, 70 or even 80 years ago.

For my part, I’ve fallen into the same u-huh, u-huh, answers that I gave my babies when they chattered to me as they “helped” me wash dishes or plant flowers or whatever. I do a lot of the same things with her that I did with them. We sat in the backyard yesterday and counted the blue-jays and the robins to determine which are the most numerous.

The differences are that when I told them something, they remembered it later that day. Mama doesn’t. That, and the fact that my babies were moving forward toward independent life, while Mama is moving inexorably away from independent life and then on to the next life on the other side of this one.

Forgetfulness is a blessing of sorts. At the beginning of this journey, she knew when she forgot and it upset her. Now, she no longer remembers that she doesn’t remember. She’s much happier this way.

I never remind her that she’s asked me that same question several times. I just answer her again. I don’t chide her about calling me 10 times in 15 minutes when I’m at work. I just talk to her each time as if it was the first call; because for her, it is.

I love my mother. I always have. But in some ways, she’s more precious to me now than she ever was before. She is so sweet, and so good. The pretensions we hide our real selves behind are gone from her. Her personality is stripped down to the unself-conscious realness of its bare self. What that is in my mother is a person who is all love, all generosity, trusting and deeply, profoundly innocent.

Caring for her during these years of her slow good-bye has given me the chance to see my mother as she really is without any cover. What I’ve seen is that she is a wonderful person, all the way through.

This is precious time, these years with her. I would not trade them for anything. There are moments, every once in a while, when I miss who she used to be. I would love to just sit down and have a talk with Mama as she was. But that can’t be and I know it, so I run my mental fingers over the weave of the thought and then fold it up, put it away and go back to the reality of the sweet baby Mama I still have.

Old age is not a tragedy. It most certainly is not a waste or a burden to those who aren’t there yet. It is a gift and a treasure; a phase of life like any other. My mother is going through a slow and beautiful passage from this life to the next one. It make take her years yet. Her family is a very long-lived tribe. Or, it may end suddenly, at any time.

Whichever way that happens, I know that she and her ultimate future are in God’s loving hands. I only thank Him for giving me this present time to love and cherish her now. It is, like she is, golden.

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