20 Things I’ve Learned Caring For Mom!

One Evening I was in a group and someone asked a question that caught my attention; “what has caregiving taught you?”

WOW! What a loaded question!

For the sake of the question and topic of the blog, I thought I would make the topic, “20 Things I’ve learned caring for mom.”

1. Patience.

This is a daily practice. No one perfects this.

Everyday, my mother is teaching me new ways to be more patient.

Some days, I pass. Other days, I do “okay.” And other days, I just fail.

And you know what…?

It’s okay! We all fail the test, some days.

No one is perfect. And the world has not ended!

I pick myself up by my bootstraps and start over.

2. Selflessness.

You won’t make it as a caregiver if all your TRUE focus is on YOU and YOU solely.

People with dementia require a lot of attention and time.

My eyes and ears are always following my mother. I never know when she is going to get into something, break something, or possibly fall! I’m on constant alert. Especially, when it comes to potty runs.

3. That my Mom is HUMAN.

Yes, I knew before my mother got ill that she was/is human. But, having her in a vulnerable state, when I’m helping her with basic needs (toileting, getting her dressed, at times feeding her…), really drives this point home more.

It exposes her vulnerability. Which in turn brings out a more compassionate attitude from me towards her.

When you’ve been stripped of your freedoms, your life, and your dignity, the last thing you want is to be standing there naked and relying on someone to help you with basic needs to be looking at you with disdain and disgust.

4. Make Friends with Change!

With dementia change is constant!

Never allow yourself to get too comfortable. Because you never know when the next phase, temper tantrum, or accident, is coming. Always be on alert!

5. Hallucinations are Real!

Sadly, my mother hallucinates daily. I feel bad for her, because there’s really nothing I can do to help her!

I learned very early on to NOT  tell her that nothing or no one is there.  It just agitates her more.

That’s because though the hallucinations are not real to me, they are indeed very real to her. It’s very important to be sensitive to that.

6. Forgiveness.

I think most (if not, all) of us can admit that our parents were not perfect. My mother was certainly no exception to this rule.

I could not do what I’m doing, if I didn’t come to terms with her humanity and lack of perfection. After all, none of us are perfect!

I have not completely mastered this, yet. I’m still a work in progress. But, I’ve definitely come to learn a lot about her and myself through this process.

7. To Speak Softer.

Not just in volume, but in tone.

Often times, the negative reactions we get from our loved ones is because of how we come across. They listen to our tone and read our emotions.

So, I do my best to respond to her more softly and with a more even tone.

8. Empathy.

There are days I find myself more frustrated than others. It’s only natural. Caregiving is one of the toughest jobs on the planet.

When I find myself frustrated some days, I have to ask myself what my mom must feel like. Wouldn’t I want my caregiver to be patient with me? To protect me? To treat me with respect and kindness?

With these things in mind, I try to think before I respond and act. How would I feel?

9. Fixations are like Drugs!

It’s very easy for my mom to get extremely fixated on something. Anything can instantly turn into a toy of wonder and amazement.

Her fixations have taught me that she would literally crawl over me to get something she wants, if she wants it bad enough.

This can be frustrating for both of us!

10. Personal Space is a Luxury!

I learned this early on. My mom gives me a small window of personal space. She usually spends much of her day within about a 5 foot radius of me. As an introvert, this can be very difficult. I value my personal space.

Then, I realize, one day my mom will one day be gone. Forever. And I will miss her. So, I actually try to cherish those moments.

And I try to use that time to interact with her more.

11. Environment Matters!

I find with my mom that the environment I set for her matters!

Therefore, I keep the TV to a low level. I keep mostly stuff she enjoys on, even though she doesn’t much watch TV anymore.

There are several things I do to keep things calm for her. And it seems to work rather well (most days).

12. She Owns Me!

Yup! It’s true!

I’m at her beck and call, constantly.

My life is centered around her and her needs.

I don’t mind. None of this is permanent.

One day, she won’t be here and I’ll miss catering to her. I know it probably sounds weird. But, it’s true!

13. Friends and Family Flee Quickly!

THIS, I probably should have made #1. Because, this was a hard and fast lesson for me and mom!

It’s a sad reality. Within about 2 years post diagnosis, my mom lost 100% of her friends.

In the beginning, everyone was cool. And they were vomiting the infamous, “if you ever need anything”, crap.

One day, mom looked up and they were all gone. My heart breaks for her.

It just goes to show that saying is true, “you’ll know who your true friends are when you’re sick or in need.”

Come on people, it’s dementia! Not the plague! It’s not contagious; you won’t catch it!

14. I’ve Lost My identity!

No. I don’t mean in the ‘OMG! I’ve been doing this so long I don’t know who I am anymore”, kind of way!

I’m very clear on who I am. What I desire. I know I am more than what I’m doing on a daily basis.

What I mean is, I’m not sure she knows I’m her daughter anymore. She knows I am with her daily. She looks for me, when I’m out.

Mom tells me “you’re a nice woman.”

And the dog, she often calls him by MY NAME! And she calls Bob, “her baby.”

Boy, I must’ve been one hairy baby! Ha ha ha

No, in all seriousness. My identity gets transferred to sources or other beings than myself. This can be really tough some days.

But, it’s also a wonderful feeling when she has moments of clarity and she says to me, “Hi baby!”

Hey, I’ll take it!

15. She Still has the Capacity for Compassion and Empathy.

It’s funny, this is a common question from a lot of people. Does she still feel and show emotions? Absolutely!!

If my mom sees something on TV thats sad, she cries. If she sees a fight on TV, she gets angry.

Even some music can sometimes make her cry.

If I seem tired or sick or upset, she’ll come up to me (sometimes, touch my face) and say, “are you okay?”, “you feeling alright?”, “what’s the matter?”

To be honest, my mother has always been very intutitive and empathic. Fortunately, dementia has not completely ripped this attribute from her yet.

16. I’m Less Tolerant of Other Peoples Crap!

Look, I’m busy. I have a full plate, daily. I don’t have time to be putting up with other people’s drama and disrespect.

These days, I’m more likely to walk away from people who aren’t supportive or are all about themselves.

As busy as my life is, I still try to find time for things and people that are important to me. Don’t abuse it, because those times are hard to come by. And as mom progresses, these times are becoming less and less.

17. Everybody has an Opinion!

Isn’t it funny how people whom are not with you on a daily basis doing what you do and having the experiences you’re having always seem to have an opinion?

Yeah. Shut up!

When I want your opinion or I know you have more experience in this that myself, then I’ll ask for you opinion. Don’t just go around giving unsolicited advice.

Of course, if you think you can do better than me? By all means, come regularly and help out.

Oh wait, they’re never going to do that? They just like to hear themselves talk!

Bye Felicia!

18. I’m broken!

It’s true. Caregiving is like going to battle daily that you know you’re effectively losing.

I mean, yeah. Some days, you’ll have victories. And I celebrate those victories, (no matter how small they may seem to others).

Truth is, at the end of the day, you know the final results. And yet, still we fight the good fight, until it’s over.

Emotionally, it will rock you to your core. Some days, you might feel like you’re losing it. And then, you see a glimmer of hope that keeps you motivated and going. But, deep down inside you know when this battle is over, you’ll probably never be okay or the same again.

I am forever changed! I hope mostly for the better!

19. Make No Assumptions!

I hate when people try and tell me what my mother does and doesn’t remember, or does and doesn’t understand.

How do you know?

I never take for granted what she knows or understands. Therefore, I’m careful of how I speak in front of her. I try not to speak like she isn’t there, but like she is always present.

She’s always surprising me with what she still knows!

20. My Mom STILL has an Attitude of Gratitude!

It’s true. My mom is always so thankful for what I do for her.

If I cook her a meal she’s excited about, she thanks me. If I give her something, she thanks me. Sometimes, she says “thank you”, and I haven’t done anything. She might just be thankful I’m there. And I’m thankful I can be there for her.

Overall, she tends be amazing. Yes, we have difficult moments and days. But, it could be so much worse and it’s not (yet). And for this, I’m grateful!

So, tell me… What has caring for your loved one taught you?