Like it or not, I enrolled in a crash course in caregiving for people with dementia when my father quickly developed vascular dementia less than a year ago, followed by my mother’s mild cognitive impairment. I’ve learned a few things so far, mostly through making lots of mistakes, and I’m certain I will learn much more before I’m done.
Many of the lessons I’ve learned are basic life lessons. I thought I’d share some of them here.
Things I’ve learned about the people we care for:
- They have feelings and they need to be treated with dignity and respect. People with dementia are still human beings, as are people with Down Syndrome or autism or any number of medical conditions. They don’t need to be ignored or talked over or spoken down to with baby talk.
- They shouldn’t be discounted. They may forget what you told them yesterday, this morning, or five minutes ago, but that doesn’t mean their memories are shot. They can remember details from their childhoods with crystal clear precision. Talk to them. Glean as much of the treasure now as you can. I made up a photo album of old family pictures for my Dad. He and Mom have enjoyed sitting there and looking through them together.
- They can still feel joy. They can still laugh. My Dad and I have really bonded lately when he tells me a story about, say, going to the circus last night, and at some level, he knows he probably didn’t really do that. He’ll shrug his shoulders and laugh. Then I laugh, and he laughs harder, and before you know it, we’re both laughing hysterically.
- They enjoy the five senses. They like to pet a warm furry puppy. Look at a beautiful sunrise. Taste a food they’ve always loved. Smell a pleasant aroma. Listen to their favorite music (unless, like my Dad, they are hearing impaired and always lose their hearing aids).
- They can feel sadness, too. It’s OK to show them that you’re sad, too. It shows them that you care.
- They get confused with choices. Don’t ask whether they want pizza or a cheeseburger. Just pick one and get it. “Here’s a cheeseburger just for you!”
- They may forget your name, but they can sense love.
Things I’ve learned to help caregivers:
- Take it one day at a time. You’ll be overwhelmed if you look to the future. My relationship with Christ is what keeps me going. I take comfort in these words: “So do not worry about tomorrow; for tomorrow will worry about itself. Each day has enough trouble of its own.” (Matthew 6:34)
- You have a special calling to be a caregiver. Often it is one thrust upon you and you had no choice. But the Lord is faithful and he will enable you and equip you for the task. He’ll provide every little thing you need to do what he’s called you to do. Often, his provision does not come in ways you might expect. “Faithful is He who calls you, and He also will do it.” (I Thess. 5:24)
- Find joy in the little things. The autumn colors. A message from a friend. An answer to prayer that encouraged you that the Lord is near. When my Dad was in the emergency room, a nurse prayed for him every time she walked by. She would smile at me and say, “The Lord sees. The Lord knows.”
- Think of how you would respond to a toddler. Without disrespecting your dementia person, go along with their story (don’t try to correct them). “Really? An elephant? That’s amazing! How big was it?” Distract them when necessary. Move the object in question out of their sightline. Divert their attention. If they’re agitated, a ride in a car might soothe them. Rub their back or their arm. Touch can be powerful.
- Don’t base your emotional well-being on how the person you’re caring for is doing. Actually, don’t base your well-being on how anyone else is doing. People have wide swings of emotion; the Lord never changes. He is your rock, your steady fortress. Look to him. Cling to his strength.
- You are doing important, unseen work that will have an eternal impact. Give yourself lots of grace. Take time away whenever it is available. You will make mistakes. The great thing about dementia is that your person will probably forget what you did wrong. But they will never forget that you love them.
My Dad’s biggest fear, now that he’s in a memory care facility, is that we’ll forget about him. I assure him there’s no chance of that. Not ever.
And then I read him a verse from Hebrews 13 before I leave, and he is always encouraged. “God has said, ‘Never will I leave you; never will I forsake you.’ So we can say with confidence, ‘The Lord is my helper; I will not be afraid. What can mere mortals do to me?'”
I really admire how you are dealing with your parents. Makes me wish I could have acted that way when my Mom was suffering from end stage cancer 😥
Vivian, I haven’t always acted this way. Believe me. Patience is not my strength. But I’m learning. I’m a work in progress. Don’t be hard on yourself. I’m sure your Mom knew you loved her and you were there with her.
Not only do you learn a lot about and from the person you are caring for, but about yourself and others around you. Some things may come as a surprise and others not. Always take time for yourself when needed. Ask for and except help. This is a journeythat I wish on no one. It takes a special person to do what you are doing. Not everyone can. Keep your faith, God will see you through this. Keeping you and your family in my thoughts and prayers. Your friend, Brenda
Great advice, Brenda. You’ve learned it the hard way and you kept the faith! So good to know there’s light at the end of the tunnel.