Bloomington resident Becky Boyle is a caregiver for both of her parents, including her father, who is living with Alzheimer’s disease. In honor of National Family Caregivers Month in November, she shares what her journey has been like and what she wants other caregivers - and non-caregivers - to know.
What is the best thing about being a caregiver?
Caregiving is all about love – wanting what is best for the other person for their good. I sort of double care-give for both my mom and my dad. My dad has Alzheimer’s and now lives in a memory care facility. My care for him is making sure that his needs are met by the facility – and that’s not easy. I expect excellent care for my father and I have to work very hard to make sure that they are doing not only what is required by law but also just ‘caring for and about’ my dad. My care for my mom is changing a little bit. At first I was her support as she began the challenge of being the in-home care giver for Dad. Mom is now experiencing her own challenges and I need to make sure that she has everything she needs to continue to live as independently as she can for as long as she can.
“So, the BEST thing about caregiving is giving the care; loving my parents as they age and seeing to it that they have what they need.”
What are some things you wished you had known before beginning your caregiver journey?
I wish that I had known ahead of time the places where I could go to get support; places where I could go to talk or let off steam with others experiencing similar challenges – and successes.
What are the things you do best as a caregiver?
I am an organizer. I can organize information very quickly in order to accomplish goals and execute tasks. I keep copious notes and I track all conversations. This is getting more difficult. Mom and Dad now live at two different facilities and they each have their own doctors, most of whom they visit twice a year: neurologist, primary care, cardiologist, dermatologist, dentist, and optometrist.
What are the biggest challenges of being a caregiver?
I work full time and my job is a busy job – I always have projects that I’m working on and since I work with college students it requires lots of energy – which I love. But I’m tired every day. I’m aging, too. I get the don’t-want-to’s a lot. I often don’t really know what to do when I visit my dad (his speech/brain connection is pretty broken) and I am short tempered with my mom. I feel pretty guilty about both of those things.
How do you manage the stress that comes with being a caregiver?
I’ve had established care and health routines my entire adult life. I exercise, I eat healthy, I love to sleep and I have a great husband who keeps me focused on fun. It’s a blessing. If I didn’t have that already in place, with working full time, there is no way I could now begin. I love my parents very much, but I do have a husband and children who do come first – I just have to admit that and not feel guilty.
“I must continually remind myself that I’m doing the best I can.”
What valuable lessons have you learned as a caregiver that you would share with other caregivers?
Hands down: Every single situation and story is incredibly unique.
“You have to honor your own story. You can NOT compare your story to someone else’s. However, finding those common ties with another’s story and being able to share is crucial.”
Oftentimes, family and friends of dementia caregivers want to help, but they may not know how. What are some of the best things people can do to help caregivers like you?
Helping a caregiver ‘like me’ might look like:
- Researching more about Alzheimer’s so that when I share my experience you have an understanding of it.
- Asking me how it’s going with my parents. I promise not to dominate the whole conversation, but by asking me it will allow me to verbally process with someone I know who cares about me.
- Participating with me because this is my dad (and mom) and all of my friends know how much I love them. Show me your support. My family is great but I was a bit sad that none of my friends offered to participate in the Walk to End Alzheimer’s with me. That would have meant so much.
- Asking me how you can help - I’ll tell you.
- Going to visit my dad with me – just once – so that you can see what I experience. This is a piece of my life that is so very important.
For information about dementia caregiving, visit alz.org/care. For tips on managing caregiver stress, visit alz.org/caregiverstress. For free, around-the-clock support, call the Alzheimer’s Association 24/7 Helpline: 800.272.3900.