When I became Mom's caregiver, the skill set that helped me most was labeled "parenting." Bathing another person, changing a diaper, selecting and laying out clothing for the day, meal preparation; all these things echo the ministrations I once provided my toddlers. The vigilance needed to keep a small child safe is a learned behavior, and I remember a strong sense of "deja vu" when I began to care for Mom. I clicked back into the attentive mindset and willingness to be on call 24/7 that my children had required of me when they were young.
However, an elderly person--no matter what stage of dementia--is not a child, though behaviors may become childlike. This is such an important delineation: although similar skill sets may be involved, caregiving is not parenting. For example, it is never appropriate to discipline an elderly care recipient. All too often I am tempted to say something like this to my mother, "You chose to behave that way, and so now you have to face the consequences." Dementia patients have no memory of sinful/rebellious/negative choices, and to remonstrate with them for behaviors they have forgotten is not only fruitless, it can damage the tender hearts of these vulnerable people God has entrusted to our care.
It is important to accurately discern caregiving issues versus patient issues. This is more difficult than one might think. Indicators of confusion over these two areas are signaled by statements such as this, "She just won't stop doing thus and so..." or "I've told him and told him and he just won't do what I ask..." Dementia patients have lost the ability to change in response to environmental cues. It is up to the caregiver to change the environment, and not in a punitive way. For example, when my mom was driving me mad by rummaging through the freezer compartment of her refrigerator, looking for something good to eat, it was my fault and not hers when she gouged out a serving of raw meatloaf for herself. I'd taken to using her freezer to store meals I prepared for our family. Solution: I began using that space for frozen vegetables and fruits--if Mom gets into those it is no big deal. The meals I prepare in advance are now delegated to the chest freezer in the basement. But I admit I attempted fruitless solutions first, at first asking Mom not to get into the freezer (HELLO! She has Alzheimer's--she isn't going to remember my heartfelt request). And I blush to tell you that I duct taped the freezer closed and then was angry when Mom thwarted this strategy by removing the tape.
As caregivers we have to be very aware that the "tough love" we exhibit to children is not an appropriate strategy for dementia patients. When something is amiss in the caregiver/patient relationship, it is almost always the caregiver who must be humble enough to make a change of behavior. Humility is key. Respect is paramount. Dementia patients are not children. I pray to empathize with my mom, to remember that she has lost so much in terms of independence and free choice. It is within my power to see that she does not lose fulfillment of the most important human need of all, which is to be loved. I must not withhold my love from Mom when her dementia related behaviors displease me, and I need to be mature enough not to respond to her in anger for behaviors she can't remember. She needs me to be steadfast in my acceptance and love for her regardless of her behavior.
Linda,
ReplyDeleteI read your blog from time to time and although I'm not caring for an elderly parent and never have, I'm learning a lot from your experiences. I've heard it said often by those who are caring for their elderly parents that it's just like parenting children except you can't make them do what you want so it's more frustrating. This post you've written helps me understand what they mean and is a good framework for understanding how it is not like parenting. Blessings as you care for your mother!
I so appreciate this comment, Charlene, thank you!
ReplyDeleteLinda, You have an amazing, kind, forgiving, loving spirit. Such a difficult journey - and one I don't wish to take - but my mom does have dementia and is deteriorating in her functionality. She lives alone, in a town 45 minutes away, and doesn't want to leave her home. Her only other child lives 1000 miles away. I pray that I can navigate this journey with grace, mercy, compassion, and patience. Thanks for your example. Thanks, too, for showing your "human-ness."
ReplyDeleteThank you Beth. God bless you and your mom on the journey ahead--there are lots of joys along the way and, always, the presence and provision of the Lord at each step. I don't always do as I know I should. Just today I got upset with Mom for something she could not help, Lord forgive me, it was awful. Some time later she said, "Why doesn't God just take me home?" And I replied, "Well, I think maybe either you or I or both of us still have lessons to learn. And meantime we still have one another!" Every night the last thing I say to mom is "I love you," and blessedly, love covers a multitude of (my) sins!
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