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, 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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Having a Mama Kind of Time


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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