My parents both have dementia. How do I stay compassionate with them?
Question: David, you have written about the importance of staying calm and being compassionate when it comes to dementia care, but you haven’t met my mom and dad! When I’m with them, it’s hard not to be irritable. I’m just MAD that my parents aren’t the same competent people my siblings and I relied on for so long. What can I do? I hate being so short tempered.
Don’t be too hard on yourself! You have a store of memories about life with your parents, and it’s only human to feel frustrated and angry when they behave in ways that contradict your lifelong image of them. You and your parents need your compassion during this difficult time. Forgive yourself—and then use education and imagination to deepen your compassion.
I recommend three steps. The first one is to work on your empathy and understanding. Imagine that a friend who promised to help you move this weekend breaks his leg in a skiing accident. You’ll understand that he’s not letting you down if he can’t make good on his promise. He can’t help it!
A broken leg is easy to see. A broken brain isn’t. Your parents simply can’t do the things they’ve always done, because dementia compounds the problem impacting judgment, skills and activity.
One way professional staff is trained in empathy is through dementia simulations. The trainer may have staff members put on glasses with Vaseline smeared on them (to simulate poor vision), wear shoes with popcorn kernels in them (to show how unsteady walking becomes), or to put on heavy gloves and then try to tie your shoes (to simulate how the brain-body connection suffers, impacting dexterity). Just doing one of those things may help you better understand your situation.
Step two is to work on your responses to the situation. Being irritable or impatient is a sign you need help. Look for a support group. Consider hiring in-home help a couple of days a week so you can take a break.
Step three is to work with your new situation instead of fighting it. Your slow-moving parents may now need more time to get ready in the morning. Trying to get my mom to an early-morning appointment used to drive me crazy. I was usually pretty stressed when we finally arrived—late, of course—to our destination. Then I realized that my mom never was an early bird. Once my dad and I started scheduling her appointments for right after lunch, things went more smoothly.
As a past caregiver to my mother with Alzheimer’s disease and a current caregiver for my frail dad, I can attest to the fact that it is hard sometimes to keep your patience. Use your time together to focus on the good times you’ve had, spend some time reminiscing, keep your mom and dad as active as possible and develop some new rituals, such as a regular trip to Starbucks or a local ice-cream spot, or watching favorite movies together on DVD.
Alzheimer’s is a long journey! Be compassionate and forgiving to yourself. Despite your frustrations, I suspect that you are a caring daughter and doing the best you can.