Caring for a parent or partner living with dementia can become an all-consuming task. It is often an experience that becomes your whole life. Some care partners take on the role because they want to, some because they feel they have to, and others because they never considered any other option.

When Being a Care Partner Becomes Your Identity

No matter how you became your parent or partner’s primary care partner, it can insidiously become your reason for being. You may find it creeping up on you the same way a few extra pounds do. You don’t even realize what’s happening until your favourite pants don’t button anymore.

Believe it or not, losing those extra pounds is a lot easier than rebuilding a life outside of care partnering. When your loved one becomes your whole world, you’ve often unwittingly created even more health problems for yourself, to say nothing of strained or destroyed relationships.

 
 

The magnitude of the problem comes into crystal-clear focus as you crash-and-burn back into the atmosphere once your parent or partner has passed. Doing things now that will prevent this outcome is the ideal of course. But all hope isn’t lost if you didn’t. It’s just harder, in the same way 50 extra pounds is more challenging to deal with than 15.

So, what can you do?

Give Yourself Permission to Feel Your Feelings

My mom took care of my grandma during the last five years of her battle with Alzheimer’s disease. Mom did a spectacular job; everyone living with dementia deserves the loving, exemplary care my mom provided her mother.

As great as my mom was on the care side, she wasn’t so great at dealing with the painful emotional fallout. She coped not by talking to us, not by doing things she enjoyed. She stayed almost constantly in a state of busy-ness. Has this been something you have observed in yourself or a care giver you know?

The thing about feelings related to a shared situation is you don’t get to experience them in a vacuum. We were experiencing the loss related to Grandma’s disease process, too. For Dad, it was not only the sweet mother-in-law that had adored him from the start, but also the loss of his wife’s companionship and attention.

Similarly, for my brother and I, well into adulthood though we were, it often felt like we didn’t have a mom anymore. This was during a time we would’ve really could’ve used one. And all of us wanted to be there for Mom, to support her, but she just wouldn’t allow it.

The worst part for my mom was just after my grandma died. She had refused to allow anyone else into her universe, and it strained her relationships as a result. Blessedly, all her relationships were built on a very firm foundation, but it took time to repair them. This was all at a time she most could’ve used support.

It seems easier to bury or suppress feelings, but they just end up coming back with a vengeance. There are unintended consequences later, so please give yourself permission to experience them as they occur.

Dump The Lone Ranger Mindset

We felt like Mom didn’t have time for us. She told us both through her actions and her words. She would say, “I’ll come sit on the patio with you in a little while. I just need to do a few things first. I’ll be right there.” And then she didn’t. She refused to pass off any care tasks to anyone else. She refused to pass off any housekeeping tasks to anyone else.

Respite care can be provided by an in-home care agency, or another family member, or even in a care community. No, they won’t do things exactly the same way you do, but ‘different’ is not the same as ‘wrong.’

Sharing care responsibilities with another person in the family is a bonding experience and a solace to both of you. You’re affirming your sister or daughter is going through a profound life-changing experience, too. If someone else providing hands-on care is something you just can’t wrap your head around, then use help another way: Someone else can do the laundry, housekeeping, shopping, and errands.

Support Isn’t Only Found in Bras!

For most of us, a supportive bra is a no-brainer. Why would it be any different when you’re going through one of the toughest things you’ll ever go through in your whole life?

You’re worthy of being supported as you navigate through this. Saying ‘no’ to support and pretending no one else has ever been where you are short-changes both you and your loved one. Everyone on the planet does better, no matter the endeavour, when she’s supported.

You can find support by going to in-person support groups. You can participate in online communities such as the wonderful one here at Sixty and Me. Another option is to request to join my private Facebook group, Tips, Tricks, & Tools for Dementia Care Partners.

Start Exercising Your Self-Care Muscle

We know we can’t go to the gym randomly and expect great results. Likewise, with self-care. Once you get out of the habit, it can be tough to get back into the swing of it. Yet the results can be disastrous if you don’t stay in practice.

Your cracked molar, left unattended, turns into your emergency root canal. Your chronic sleep deprivation turns into a short-tempered flow of words you can never take back. You are just as important as your parent or partner; anyone who tells you different is lying to you.

You deserve to be in reasonably good health. You deserve to luxuriate in a rich cup of coffee on your patio as you enjoy the view and collect your thoughts for the day. You deserve to be loved and tended to. All that good stuff starts with you recognizing how important you are. For more ideas on this, see 11 Tips for Being an Awesome Care Partner.

Make Room for All of You

Being a primary care partner to a loved one living with dementia or other terminal illness often means your world begins to shrink right along with theirs. This is unless you make the conscious choice not to let it.

Don’t shut out your adult kids. They’re going through a painful loss, too, and it’s mutually comforting if you’ll allow them to go through this with you. Particularly if it’s your partner, your adult child can feel like she’s losing both parents. One to the disease process itself, and one to care partnering.

True friends, the people closest to you, are more precious than gold at this juncture. When you can simply be yourself, when you can say anything without fear of judgment, when you can literally cry on a shoulder, when you can laugh over something silly… that’s priceless.

Don’t Lose Pieces of Yourself

A consistent negative answer to invitations from friends will rob you of that comfort. Those answers will eventually turn into a deafening silence emanating from your phone. Please remember that you deserve to have strong, fulfilling relationships outside of your ill loved one. You deserve to have interests and hobbies that have nothing to do with being a care partner.

Building a separate or new identity can feel terrifying as you begin to do it. Rather than thinking of it as something completely different, try thinking of it as “in addition to.” You don’t have to give up being the primary care partner. It doesn’t mean you love your parent or partner less, to say “yes” to yourself. Don’t lose pieces of yourself but continue to add beautiful threads to the unique tapestry that’s you.

Have you been down this path as a senior care giver? What helped you to find balance? What do you know now that you wish you’d known at the time? Please share your experience and join the conversation.

Christy TurnerChristy Turner is a speaker, guide, consultant, and the founder of DementiaSherpa.com (CTC Dementia Care Management). She has enjoyed the privilege of working with over 1,045 people living with dementia and their families. Visit Christy’s blog and follow her in social media.

Let's Have a Conversation!