Imagine if you never went to sleep for two weeks straight. No naps during the day, just two weeks of being wide awake 24-7. Now, imagine you followed this pattern for two months, and eventually, those two months turned into two years—and you never once stopped to rest.
You couldn’t survive, right?
The exercise may seem extreme of course, but a pattern of sleepless nights and restless days is a reality for many family caregivers. And while some may sleep, even for a few hours, the day’s worries and woes are likely lingering in their dreams and waking moments. They’re not truly resting.
If you're caring for someone but don't stop to rest and recharge (and sometimes, all you need is 10 minutes of staring at the birds outside your window instead of sorting Mom's medications), you're taking a risk. You're risking your health and well-being. You're compromising your strength and sanity that you need to continue caring for your loved one.
Hear from five current and former family caregivers who discovered the gifts of respite:
“Unfortunately, I did not have any long-term in-home care available to me at the time of my mom's illness, and the stress level from being the only caregiver 24/7 was more than I could handle,” said Linda Carnes, a former family caregiver. “We had in-home physical therapy for about six weeks, and that was such a blessing because I didn't have to transport her during the winter months. It also offered education on how to care for your loved one in the home (how to do the stairs properly, how to help her get into the shower, etc.). That education was priceless to me, as well as the encouragement the therapist gave to both of us.
Anyone who is a caregiver should take full advantage of any assistance that they have access to, not only for your health but also for the loving care that you will be able to freely give to your loved one because you've had a ‘break.' You owe it not only to yourself, but also to your loved one."
- Linda Carnes, former family caregiver
“When my grandmother’s dementia progressed, my mother found a care community with an Alzheimer's/dementia care unit,” said Amanda Walts, a former family caregiver. “She really couldn't care for herself and would get in moods where she would lock everyone out of the house. She had a long history of mental illness before dementia and was abusive to her three stepchildren and my mother until they left home at 18. No one could risk moving her in with them, and she wouldn't leave her home anyway. She was in her 90s and had heart issues and would fall down her stairs. After one particular episode, the doctor agreed to sign her in, and she was there until the end. She received great care, better meals than she would have had on her own and we knew she couldn't hurt herself or someone else.
This was about a year after my grandfather succumbed to cancer. He died at home, and he had hospice nurses come in to help. He never told anyone he was ill. We found out from a visiting nurse, and we took shifts with him the last weeks. They were amazing to him. He became unresponsive, just went to sleep and never woke up, but they carried on conversations with him as if he was. They made sure he was comfortable during his last days. We were grateful for them. If left alone, my grandmother refused to give him the pain medication—she decided he didn't need it—and we would have to distract her long enough to sneak in a dose or fight with her and risk being locked out and unable to care for him.
We've done both types of respite, home care and the care home, and each time it was perfect for the person we were caring for, and preserving our own ability to balance their needs and ours. My boys were preschoolers, and my mother was in a rocky marriage and worked fulltime. My aunt and uncles all live out of state, and my brother works 10-12 hour days. The three of us did as much as we could, but we knew we needed extra hands for them to have the best care in their final days to live with as much dignity as possible. "
- Amanda Waltz, former family caregiver
"We receive respite care from the VA because Dad is a WWII veteran,” explained Amy Goyer, speaker, author and current family caregiver. “The idea for respite is for the caregiver to get a break. But for us, the help we get from the VA is helping us as our family cares for Dad together. So far, we haven't been able to leave the house because they have never been consistent in who they send, and there are a lot of details in caring for Dad, so we have to train them. There is a lot to do when caring for him though, so it's always nice to have a second pair of hands. While this extra support does relieve our stress, it would be very nice to have someone consistent so that we could leave even for a couple of hours."
- Amy Goyer, family caregiver, speaker, author, and consultant
"I didn't use formal respite care,” said Cathy Sikorski, elder lawyer, author and family caregiver with 25 years’ experience. “I have a large family, so if I were going on vacation or out of town, I would have family members step in. But they were ‘trained' by me. Since they might have to do meds or end up in an ER, I would go over as much information as I could, and I would write it up for them. Truthfully, those were invaluable times for me, my husband and my family. I was so grateful that I had family to step in. But I would've used respite care if I had no one. It wasn't fair to my family to never have that obligation of caregiving."
- Cathy Sikorski, family caregiver for the past 25 years, elder lawyer, author of 2 books about caregiving
"Respite comes in many forms, and sometimes, it's created by simply sticking to your boundaries or commitments,” said Linda Abbit, another caregiver with over 25 years experience and author of a caregiver book. “For example, while I was the primary caregiver for my parents, I planned an evening to spend a few hours out to dinner with friends. Right after we arrived at the restaurant, my cell phone caller ID showed my dad was calling. I let it go to voicemail. When I listened to his message, I knew if I called him back, he'd want me to handle the issue. But I knew my husband could take care of it just as well as I could. I called my husband and asked him to please respond, and explain to my dad I was unavailable that evening.
Yes, it would have been easy to answer my phone and cut my evening short,” she explained, “but I made up my mind to protect the time away I knew I needed. And as family caregiver, you can’t get caught up in the mistaken belief you are the only one who can give care. That stops you from allowing others to provide you with a much-needed break, alleviate stress levels and prevent burnout.”
- Linda Abbit, family caregiver for 25 years, family caregiver coach, author of new book, The Conscious Caregiver
You can read more about vital respite care services by clicking here.
You provided assistance when I didn't know where to turn.
You provided assistance when I didn't know where to turn.