If I were to write a letter to myself before caregiving, here’s what I’d write.
You can do this. The caregiving road you’re about to walk will be at once the scariest, saddest, most stressful, and most beautiful journey you’ll ever make. But you can do this.
I know it seems daunting now but here are a few things to remember. Read them. Believe them. Act on them. Take them to heart because they will help you.
Caregiving journeys are like diamonds
No two care stories are exactly alike. Sure, some are similar but none are identical. And yours will be uniquely yours. It’s yours and Mom’s story to make.
You’ll doubt yourself and question the decisions you make. But don’t. Educate yourself and apply what you learn in a way that makes sense for you and Mom. You’ll know how.
Read books. Check out wonderful groups like Alz Authors, where you can find writing by people who’ve walked the road you’re setting out on. Or tremendous websites like caregiving.com, whose mission is to “care for you as you care for your family.” You’ll find wisdom in these places.
Get over yourself and go to support groups. Everyone’s story is different but there is wonderful comfort in these groups. Being around others who can relate to the challenge you and Mom are tackling will replenish your strength. And you’ll need it.
You’ll do your homework and you’ll do the absolute best that you can. Trust in that and don’t doubt yourself.
Your job isn’t to ‘fix’
No matter how badly you want to, you won’t be able to ‘fix’ Mom’s dementia. Nobody can. No medication can. The best that can be done is to slow its progression. As a son of dementia, you need to know this.
And this: if you’re thinking about ‘fixing’ Mom, you’re missing the point. Your mission as Mom’s caregiver is to support her–to set her up for success in her new phase of life with dementia.
Thinking about ‘fixing’ will distract you from what Mom really needs. To be loved even more than she has ever been. Lifted up like she’s never been lifted up before. Listened to and related to. And to be given hope.
If you know from the start that you’re job isn’t to ‘fix’, you’ll be able to stay focused on what’s most important. Being present–mentally and physically– to support Mom. That is your job.
You have to care for you, too
Self care. If you don’t take care of yourself, you won’t be able to take care of Mom. Yes, you’ll be making lots of sacrifices without giving it a thought. And you should. But don’t ignore yourself. Don’t sacrifice your health. If you do you’ll suffer. Worse, Mom will too.
Keep exercising. Continue to make time for yourself. Whatever makes you happy, keep doing it. Even just a little bit. To be there–really there– for Mom, you need to be healthy. And you can’t be healthy if you ignore yourself.
Make a calendar and carve out time for you–it doesn’t have to be much, but it has to be for you. Regularly. Carve out the time and guard it fiercely.
You NEED to ask for help
This is an important one. Asking for help seems simple on the surface. But when you’re in the midst of this trek, it won’t be as easy as it seems.
Things will seem overwhelming at times, with a never ending to-do list. You’ll have a ‘deer in headlights’ sort of feeling. You’ll know you need help but won’t always know what you need or who to ask. Don’t overthink it.
And then you won’t want to be a burden. Stop. Don’t think that. You’re not a burden. Ever. Friends and family want to help, it’s just sometimes they don’t know how to ask.
If there’s stuff that you know needs to be done and you don’t have to be involved, outsource it. Ask for help. Just ask. You’ll be delighted (and so will the people you ask.) Just. Ask. For. Help.
It’s Ok to cry. And laugh.
You’re in for an ultra-marathon length emotional rollercoaster. Whatever you do, don’t lock your feelings away. Don’t deny them.
Go with them. Cry when the mood calls for it. It might feel good but even if it doesn’t, you’ll be helping yourself without even knowing–just by being in touch.
And laugh too. The road you’re starting down is uniquely yours and it will be undoubtedly be bumpy. But there is beauty in the bumps. Enjoy them. Laugh at them. Smiles and laughter will replenish your strength. And you’ll need it.
Life won’t be perfect, but it can still be beautiful
Your life wasn’t perfect before, so why would it be now? There will always be more items on the to-do list. Always more to accomplish. You’ll never feel caught up but don’t let it get you down.
Instead, prioritize what’s most important. Prioritize what needs to happen on a given day or in a given week. Make what you prioritize your focus and don’t sweat the rest. You’ll get to it.
And embrace this new chapter as a gift. Your relationship with Mom will become deeper than you could ever imagine. You’ll learn lots about yourself. And you’ll be gifted wonderfully enriched perspective on things that make the world go round–kindness, compassion, and empathy. All because of your experience caregiving.
Mom needs you now. And you are ready. You can do this.
Your Future Self
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Layne R says
So beautifully written Matt and something all of us going through this need to read.
Thank you for the inspiration to carry on,
Matt P says
Thank you for reading and commenting Layne! I appreciate your words. Much love to you!