Encouragement for the Weary Caregiver
I like the way Olympic marathoner Joan Benoit Samuelson refers to two big parts of her life. B.C. and A.D.: before children and after diapers. It captures the feeling of my whole life changing when I became a mother. And it was similar when I became a caregiver for my mom with Alzheimer's. I knew everything was going to change but didn't really understand how much it would.
I would love to see dementia caregivers receive the same type of encouragement that new mothers do. I never want to equate our loved ones with children and do not agree with some of the comparisons between the two. But remembering some of the advice that people told me after I had children has encouraged me along the way while I take care of my mom with Alzheimer's.
Leave the dishes and ignore the laundry
When my first child was born, I actually forgot what I liked to do in my free time. Did I like reading? Or was it running? Or should I just clean the bathroom? I finally made a list on my phone - called "Things I Like To Do." So I wouldn't waste those precious 30 minutes while the baby was napping doing something dumb like picking up toys or calling the cable company. I had to rethink what my free time should look like.
Rethink your free time
Caregivers can similarly lose themselves in their tasks and feel paralyzed when they do finally get a break. Don't hesitate to leave the dishes and ignore the laundry. Do something for yourself! If you are worried about wasting the time, make a list of five things you could do right now and post it on the fridge or save it on your phone.
Sometimes all I need is to sit outside in my backyard and get some sunshine on my face. Or drink a glass of water. Or eat a cookie or take a shower or paint my nails or go for a walk. These little things make me feel like I am taking a break and caring for myself for a minute. Some days I feel better getting some errands done or cleaning up around the house. There is no right or wrong option as long as it makes you feel better after having done it.
You don't need money to take a break and you don't even need to go anywhere. Sure, I would never turn down a massage or a vacation. But don't limit yourself by those cliché, and usually expensive, self-care ideas. It's probably more helpful to have a few ideas that fit in your everyday life and don't cost a penny, especially if you are unable to leave your loved one unattended.
Do your best without losing your relationships
So much of caring for children and loved ones with dementia is putting ourselves aside and thinking of someone else's needs. That kind of selfless love is essential and valuable. However, it is also important to remember who you are outside of caregiving and what other relationships in your life are important. Because at some point it will end and you will no longer be a caregiver.
When I became a parent I had this helpless baby who needed me for everything. I was in charge of keeping a human alive and I was very invested in that responsibility. But sometimes I would be so wrapped up in the baby's needs that I forgot to be thoughtful and kind toward my husband or my older kids. I remember thinking: Can't they see how busy and important I am right now?
Focused on my singular mission as a dementia caregiver, I can do the same thing. I can bulldoze the rest of my family while trying to meet my mom's needs.
Take time off
If no one has told you or you need a gentle reminder, here it is: It is okay to take a night or a weekend off and spend time with your friends, your significant other, your children. Don't ever feel guilty for nurturing those relationships.
Even though our loved one might have the most pressing and immediate needs right now, I know that someday I will no longer be a caregiver for them. And I want my marriage and other relationships to be standing at the end of it.
Know that things will get easier
The blur of the baby or caregiving years can hit you hard. But there is a light at the end of the tunnel and part of it is a waiting game. My support group leader always says every three months something in your caregiving will change with your loved one. So that behavior or repetitive story or struggle you are going through right now will eventually end. It will get easier.
My lightbulb moment
My two older kids were both in school part-time and I was sleeping through the night. My brain worked again. I realized that I wasn't just trying to get through the day but I was getting excited about the future - something I had not felt in a long time. Soon I could train for that triathlon I had always wanted to do! Or plan dinners again! Or go on a girls' trip - without a nursing baby in tow! It felt like the sun was coming out bright and shiny after a storm.
Some caregiver encouragement to you with love
It is very difficult caring for our loved one with dementia because things sometimes get worse before they get better and at the end of all of the struggles we have to say goodbye. But other things will get easier. Take care of yourself and your relationships along the way and we will get through this - and I believe come out better on the other side.
How do you take care of yourself and your relationships in the midst of caregiving? Tell us about your experience in the comments below, or share your story with the community.
Does humor help you cope?