The caregiving lessons Mom taught me came thick and fast during my childhood. Every day, as she cared for my dad, her example provided lessons – some good and some not so much – to last a lifetime.
Or so I thought.
Nowadays, Mom lives in a memory care unit. She's been there four years.
"How are you?" I ask at the beginning of my visits.
"Lonely," has been her consistent reply for the past few months.
No matter how often my siblings and I visit her, take her on outings, or call, her response remains the same.
"I'm lonely," she says.
Her perceived reality breaks our hearts. In our search for ways to relieve her loneliness, I learned four strategies to add to the lifetime of caregiving lessons Mom taught me as a child. Their effectiveness makes me want to go back to my days as mom to a child with special needs and give them a try with him, too. Since that's not going to happen until somebody works the kinks out of time travel, I'll pass the caregiving lessons Mom taught me on to you.
Lesson #1: Preserve your loved one's dignity.
This lesson is paramount whether the person in your care is nine months old or 90 years old. Our loved ones hear and remember, in one way or another, what we say about them. Our words affect their how they view themselves. Therefore, we have to find ways to preserve their dignity while communicating our observations and worries with the professionals – in home care workers, residential care providers, doctors, teachers, therapists, and others.
For example, Mom is now biting her fingernails to the quick. Reporting that in front of Mom makes her feel like she's being tattled on, so I called the doctor's office and asked her to look at Mom's fingernails during her next routine appointment. The doctor did a lovely job of talking to Mom about dangers of infection and encouraged her to use nail clippers.
Lesson #2: Create a caregiving team.
A caregiving team provides good benefits. First, one person isn't doing all the caregiving all the time. Second, a team of caregivers can generate more solutions than a single person can. Mom's team consists of my brother, sister, and me. My brother and I live close by, so we visit her on different days of the week and coordinate weekend outings. My sister lives 3 1/2 hours away and visits one weekend a month. I oversee Mom's finances and give my siblings cash periodically so they can shop for her clothes, snacks, and other supplies. I pick up her library books and my brother returns them. We all communicate about behavioral or physical changes noticed and discuss ways to address them. Our discussions result in better decisions and better care for Mom.
Your child's team might consist of a spouse or partner, relatives who take an active interest in your child's life and care such as a grandparent, aunt, uncle, an adult sibling of the child, or a close friend. A large circle of caregivers also leads to a richer life for your child.
Lesson #3: Listen to others.
Sometimes, people who care about your loved one can offer good advice. They may not be active caregivers in your loved one's life, and therefore can provide a more objective and less emotional perspective. My brother went home and related Mom's comments about being lonely to his wife. She suggested hiring someone to visit Mom two-to-three times a week to further break up her day. Her great idea had never occurred to my siblings and I, though we knew the costs wouldn't cause Mom any hardship.
Think about the people around you who love your child, are good observers, and who have offered good advice in the past. They could be extended family members, friends, neighbors, medical professionals who work with your child, teachers, or pastors. Talk to them about your caregiving challenges and listen to what they say.
Lesson #4: Check with insurance.
Mom's long term care insurance policy is excellent. They pay 80% of her monthly residential care, so I was pretty sure they wouldn't pay for additional companion care. I called anyway, since hearing them say "no" would cost only a little time. If they said "yes," the savings would be substantial. They said yes, and Mom is reaping the benefits of more companionship, less loneliness, and the insurance premiums she paid for decades.
Always, always check with insurance, and with government funding programs your child qualifies for, and anything else you hear about. Hearing an agency say no (if they do, refile or re-apply) costs only your time. If they say yes, you can thank Mom by leaving a comment. I promise to pass it along to her!
Her children rise up and call her blessed..
Proverbs 31: 28
Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she is co-authoring with Dr. Gary Chapman, will be released August 6, 2019 and is available for preorder now on Amazon.
