I’m going to assume that you didn’t come into caregiving saying “Yes! I’m so happy that my Mom has dementia and I get to take care of her!”.
No one says that.
No one wants to become a caregiver to a loved one, because that means that there’s something wrong. And even if you DID resign yourself to the fact years ago, you didn’t think you’d have to do it THIS soon.
You have your loved one in your house, maybe with a spouse and kids, maybe you’re doing this on your own. Or maybe you are going to their house still, waiting for the time that they will have to move in with you, or vice versa. Either way, now that your loved one is under your care…
…What the heck do you do??
Here are some ways to acclimate to this new way of living that will keep you from ripping your hair out.
Knowledge is Power!
The more you know about dementia and the progression of your loved one’s dementia, the more you will be able to understand what your mom or dad is going through. There are many different kinds of dementia, and once you figure out which type your loved one has, read up on it.
Understand why your mom isn’t reading books the way she used to. Understand why your dad won’t stop putting things in his mouth.
Once you have that knowledge, you will have more empathy for your loved one when they do things you may think are a little wacky. Being able to have that knowledge and empathy makes your life a million times easier because you can adjust accordingly.
For example, when mom isn’t reading the books she used to, maybe you can put out more picture books that she can look at books that require less comprehension. That will be able to give her a sense of independence and dignity that you wouldn’t normally think of otherwise.
Maybe the fresh flowers you used to have on the table you have to move to a higher shelf so that Dad won’t put them in his mouth and eat them. It still gives you the opportunity to enjoy things you love (like candles or flowers) while keeping things out of Dad’s mouth that shouldn’t be there.
Know that your relationship with your loved one is going to be different
Because dementia is a progressive disease and to date, there is no cure, the relationship you used to have with your loved one won’t be the same. Period.
What you have to understand is that even though they are not the person they once were, you are still able to have a relationship with this new version of your mom or dad. It’s just going to be a little different.
I have encountered many families whose mom used to be the one who everyone went to, and now they are more closed off and introverted. I have encountered just as many families whose mom used to be cold and closed off and has now become the sweetest, most loving lady in the world.
Talk about either one being super confusing and emotion-inducing.
Take the time to find out who this new person is. Many times, it’s helpful if you have a sibling/old friend that you can decompress with and talk about the change that’s going on in your loved one. If you don’t have this lifeline, I highly recommend getting a therapist to be able to process the information, and I recommend finding one that has experience or knowledge with dementia.
Caregiving is weighty. Take the problems that arise one at a time, day by day.
There are so many things as a caregiver that you need to do everyday, but there are some things that are more important than others.
Being able to figure out how to feed your Dad, your kids, clean up and prepare for the next day is far more important than your dad needing more engagement in the short term. Or between your grandma refusing to bathe or getting her laundry done: figure out how to bathe Grandma so your life isn’t so hard. The laundry can wait.
The proverbial oxygen mask must go on YOU first. Figure out how best to navigate your day, then get your loved one the best quality of life you know you can give them.
A solution to every problem you have is to take a step back, take a deep breath, and assess the current problem at hand. Can you get a friend or hire a caregiver to stay with your loved while you go shopping? Sometimes getting a coffee and having a few moments alone can change your whole day, making you a better caregiver for your family.
If you don’t laugh, you WILL cry.
Dementia is weird and awful, but there can be some pretty funny moments, and if you don’t grasp these beautiful little moments with everything you have, the caregiving WILL overtake you. Quickly.
You’re watching TV and your Dad says something about the person on TV, and maybe adds a swear word. You’ve NEVER heard your Dad swear before. You may laugh because the comment was genuinely funny, but you also may laugh because you don’t know what to do with this newfound…language.
Your mom would have never put herself “out there” or gone on stage, and now you’re singing YouTube karaoke with the kids. Who is this woman that is supposed to be your mom?? When in Rome, sing what the karaoke-ers sing! That’s the quote, right?
Cherish these moments, because there are going to be many moments where you’ll want to cry.
And if (when) you DO cry, that’s okay too.
Crying is a very normal part of caregiving, because it’s very hard, and it will always feel like there’s something you don’t know. Dementia has a crappy habit of changing things up on you.
Give yourself the grace to step away for a moment, and take a deep breath.You getting super stressed out and taking it out on your family or loved one (probably will happen at some point…) helps no one’s situation.
There are moments in your day where you can step away from your kids, spouse or loved one, go to the bathroom, and cry.
It can actually be a great release. Crying releases cortisol hormones through your tears, so you’re actually RELEASING your stress, physically! So go ahead, cry it out!
Wrapping up
You already know that being a caregiver is hard work, and maybe it’s harder work than you were anticipating. Everyday brings new twists and turns to your life, some good, some not as good.
Take it one day at a time, because even though you claim you can do everything and try, you can’t. You’ll burnout in no time, causing additional stress and sickness that you REALLY don’t need in your life.
Read up on care giving (like this article), read up on dementia, and find resources and support that will help you become a better caregiver and ultimately make your life better.
I wish you all the luck and patience in the world,
