Caring for Someone With Dementia Is Not Like Caring for A Child

It is so much harder

I never really understood what it meant to be a caregiver.

This is odd, because for many years my primary job was to take care of my kids. If you’d asked me then if caregiving for a baby or a toddler or two was much different than caring for an elderly person who needed help, I probably would have shrugged and said, “Well, caregiving is caregiving, how different could it be?”

I couldn’t have been more wrong.

Providing any level of caregiving for my elderly mother with advancing macular degeneration and dementia is much, much harder than I ever thought it would be.

If my mother had ever been the type to believe in “love languages” (she’s not — she’d snort and say something about them like, “Love languages? Is that something some educated person came up with to waste time?”) her main love language might have been “independence.” All her life she was a hard-working, proud, mostly healthy person who strongly believed that God helps those who help themselves.

To the extent you couldn’t help yourself, she would have believed that your family are the ones who should help you. She came from a large family and she had six kids herself, and she has clearly always believed that that’s one of the reasons you have kids — so they can take care of you eventually.

All of her kids stayed in the community where we were born, and had worked alongside her and Dad with farm work, yard work, garden work, house work, and medical appointments for decades. After dad died and she had a stroke, however, we found the need to care for Mom increasing steadily as the years passed. At first we helped with paperwork and bills as her eyesight failed, then we helped with household tasks after her stroke, and eventually (after she had a bad fall and exhibited cognitive decline) we worked shifts so that somebody was with her at her house 24 hours a day, 7 days a week.

How hard could it be?, we all thought. We had each other and we lived relatively close and she was just one old person. We could keep her in her own home, right?

Spoiler alert: We couldn’t.

Here are the some of the challenges, particularly when caring for an elderly person with dementia:

1. They are mobile and willful and they are full-sized people.

If you have ever tried to stop an old or a drunk person from driving their own vehicle wherever they want to go, you know it is WAY different from pulling a toddler back from trying to run out the front door.

Elderly people are often at least somewhat aware that their eyesight, reflexes, and mental senses of direction are not what they once were, and they DO NOT LIKE IT. Many of them strongly resist losing the independence that their car represents (or even just being allowed to walk to stores and make their own purchases or run their own errands).

To understand the scale of this problem, all you have to do is a quick online search on the topic “how to take car keys from my elderly parent” and you will see a LOT of sites and chat threads on the subject.

Elderly people may have aches and pains and physical challenges, but they can still be very strong. It can be both physically and mentally exhausting to care for someone who is your size or bigger than you, and who believes they should be in control of you (not the other way around). As dementia increases they can also act in ways that are socially unacceptable, or become violent and abusive.

2. Their sleep can be unpredictable, and they can know just enough to be a danger to themselves.

For years, my eldest brother stayed overnight with my mom. He’s a farmer and every day he works with animals and heavy machinery, and for his own safety, he needs a certain amount of sleep.

He rarely got it, because mom was up several times a night to use the bathroom and sometimes needed help. Also, she had always been a night owl and she resisted going to bed at a reasonable time.

We also had to put alarms on the doors, because eventually she didn’t really even understand what time of day it was and we were afraid she would wake up during the night and wander outside (as she spent a lot of her life working outside and that was very natural for her).

Many babies and children also have unpredictable sleep patterns, and can be exhausting to care for when they don’t sleep well — but at least you often have the hope of a light at the end of the tunnel as they grow up and (maybe) sleep a little better.

Elderly people are not going to grow up and become more independent. Not getting any sleep and doing the work of caregiving with no hope or end date in sight is extremely stressful.

3. You are often caregiving for them while you are also trying to live your life.

The thing that really did my siblings and I in were the other responsibilities we had while simultaneously trying to provide full-time care to our mother.

We all have jobs; most of us are married with kids (and the person who isn’t married is a farmer, which is like having three full-time jobs). Several of our spouses have significant health challenges that require frequent medical visits and special diets; some of our kids have similar challenges.

I have kids in that age where their activities also start to take over your lives and you have to drive them around because they don’t yet have licenses of their own.

It was becoming impossible to schedule things I had to be at — specific lesson times, concert times, school events, PTO meetings and volunteer activities — with being at Mom’s during certain times of the day or night. My siblings all had similar conflicts. Add in the fact that we live in a state with wildly unpredictable winter weather, and each day was a stressful merry-go-round of scheduling.

One of my siblings did offer to have Mom move in with her, but Mom was very, very opposed to the idea. Her dementia might have already been sufficiently advanced that she did not understand the alternative to that option.

4. If they are in their own home, you also have to take care of the home.

Depending on where your parent or elderly person lives, as they become increasingly unable to deal with the demands of housekeeping and home maintenance, that will also become your job.

Not only will you have to take care of your own issues (like wonky sinks or toilets or failing roofs or windows, the list is endless) and lawn mowing and snow removal, you will have to take care of those things for a whole second residence. The result? You will let your own home problems slide (which may also cause problems with your own spouse and family).

It’s another exhausting thing to have to do, and it’s definitely something you forget to factor in when you are trying to figure out how much time you can spend caregiving. I don’t know about you but I’m not crazy about cleaning MY house, much less someone else’s.

Add in the fact that the people for whom you are caring have their own ideas how house maintenance must be done (and they might not match your ideas), and the fact that as people’s dementia worsens, they may even “shadow” you and never leave your side and make it physically hard to do any house or yard work. You might be able to put a toddler in a Pack ‘N Play and quickly mow the lawn, but you don’t have that option with an older person.

5. Not everyone is prepared for the physical nursing requirements and the incontinence.

Maybe we just don’t think about this sort of thing until we have to, but it is very different to clean up a child’s bathroom accident’s and an elderly person’s urinary and bowel incontinence.

If you watch enough videos on this subject, you will start to notice that the point at which people often have to go into assisted living or nursing home care is the point where their incontinence becomes an impossible part of nursing. Helping an elderly person use the bathroom and cleaning them up after they lose control of their urine or bowels is not for everyone, and it can also mean a lot of work cleaning up clothing, beds, chairs, floors, and bathrooms.

Elderly people also often require specialized nursing care. It is not easy and it is not possible for everyone to learn (or to become comfortable with) doing things like changing urinary catheters, providing wound care, or doing blood sticks or draws for regular blood thinner or diabetes testing. I know that personally I really struggled with this aspect of providing care. I am both somewhat nervous and impatient, and that’s not a person you want providing wound care or other routine medical procedure assistance. I learned some things, but I was never really comfortable helping with Mom’s physical needs, even something as basic as showering.

In 2022, my mother entered assisted living and soon moved into a dedicated Memory Care facility. She is confused and clings to the delusion that she can care for herself (she can’t) and wants to go home, and even though all of her children feel we had no real choice but to help her find such a facility, we are depressed for her.

We all provided full-time care for our own children while doing other jobs, and I know our abilities to do that made us think we would be able to care for Mom.

Caring for one elderly person (and a mobile one at that — I can’t even imagine the physical work involved in lifting a bedbound or other disabled person around) was so much harder than I ever thought it would be.

I am so thankful for so many of the caregivers at my mom’s facility — and I worry that such high-quality facilities are rare and getting rarer (and more expensive). It is time now for all of us to realize the work that is coming as our population ages, and start to talk about real, achievable solutions to support each other while caring for our elderly parents, relatives, and friends.