One of the great challenges of providing care to a dementia patient who is also a loved one is the sad and difficult fact of changing relationship roles. It is a daily challenge to release the parent (spouse, child, sibling) you once had, and accept who that person has become. And it is an even greater challenge to respond to that person from the perspective of a caregiver rather than taking a loved one's negative comments and behaviors as blows to the heart. Sometimes it is nearly impossible not to react to a hurtful situation based on the relationship roles of the past rather than to respond from a caregiving perspective.
Here's an example: My mother insists upon eating all her meals in her chair. When she is finished with her meal she stacks her plate, cup, and silverware on the table next to her, and the next time I come through, I pick up the dirty dishes. Now, Mom always has a bottle of water by her chair. She has gotten into the habit of giving the cat a drink of water from this water bottle, usually by filling whatever dish or container is available to the brim with water. Cats love falling water and Kitty has learned that mom will pour water for her if she begs for it.
Problem is, Mom is adept at filling a plate or saucer to the very edge with water so that it is invisible, and like Charlie Brown and the football, I never learn. I come rushing through preoccupied with some task that needs my attention elsewhere, scoop up Mom's dishes---and water goes everywhere. It is truly amazing how much water one of these small vessels can hold.
I tried being extremely vigilant to remove Mom's dishes the instant she finished a meal. She then began giving the cat a drink from the lid to her water bottle. After awhile she would replace the lid onto the bottle, and drink from it happily for the rest of the day. Ewww. Now what to do? I can't take away her water!
It is hard for me to avoid the feeling that Mom doesn't care how much trouble she causes me, does not listen or respect my repeated requests that she not give the cat water at her chair side table, or even does this on purpose just to aggravate me. If she was the Mom I had 25 years ago and behaved like this, all these things would be viable possibilities. But my mother's cognitive processing and ability to remember have been severely damaged by Alzheimer's disease. It isn't so much that she isn't the person she was, but that my mother, whom I love, has suffered brain damage as a result of a disease. I don't like people to make comments such as "That person isn't my mother." I think this is an unhealthy (and unkind) way of detaching emotionally from a loved one. My mom is a victim of Alzheimer's disease. I'm not going to detach from her.
But this very commitment I've made not to detach makes caregiving painful at times.
Now. Back to the imagination versus reality statement at the beginning of this post. The Lord has provided me a way to think about my mom's Alzheimer's that has helped. I know that it isn't exactly accurate, but the fact of the matter is, we can't see clearly things of the Spirit with exact accuracy. We can't read God's mind or fully understand the workings of His ways. But if we will pray for the Lord to enlighten our imaginations with His Holy Spirit, we can arrive at a closer approximation of spiritual truth. I've used this strategy to good effect on my caregiving journey.
When I felt Alzheimer's to be a tragedy and the assignment to provide care to my mother as being a ball and chain around my ankle; this prayerful, imagined dialogue between my mother and the Lord helped me:
Lord: Anna Ruth, I'm going to ask something difficult of you, but it will bless your beloved Linda greatly.A flight of fancy? Probably. But I believe this flight of fancy has given me a closer understanding of my mother's heart and the Lord's great love than any other way of thinking about this Alzheimer fiasco has done! My mother had (and has) many aggravating faults, as does every human being; but I never once in my entire life have doubted her love for me. Although she has Alzheimer's, my mother still loves me. That isn't going to change, no matter her outward behavior. God, in His perfect wisdom, loves me. And I know He will work this Alzheimer journey to my mother's blessing and mine, and through the power that enables Him to bring everything under His control He will work everything out for our good and His glory (Philippians 3:21, Romans 8:28).
Mom: Anything, Lord, anything for You, anything for my Linda.
Lord: I'm asking you to accept a journey through Alzheimer's. If you were to come home to me suddenly, Linda would be greatly damaged emotionally and would need years to recover. A gentler leavetaking will enable her to release you by stages. And, as a bonus, she will learn patience, long suffering, and humility; all traits that she badly needs and is now lacking.
Mom: If it will help her...
Lord: It will.
Mom: All right Lord. I can do anything with you at my side.
When I spilled water on the library book on Mom's side table this morning, I smiled at Mom and said, "It's ok, I'm figuring this out!" She smiled back.
Mom: I hate to do that water trick one more time, Lord, it's hard on my girl.It's ok, Lord, I think I'm getting it. Praise Your Name!
Lord: She needs to learn patience. She will be blessed.
Mom: OK, then Lord. But when we all get to Heaven you'll explain this to her, right?
Here are the lyrics to the chorus of the wonderful old hymn Farther Along:
Farther along we'll know more about itPraying blessings for you today, my fellow caregivers,
Farther along we'll understand why
Cheer up my brother live in the sunshine,
We'll understand it all by and by.
In His Love, Linda