Caring for those with dementia

caring for people with dementia thumbThrough my experiences as a caregiver, I have learned a great deal about applying my beliefs in the service of and care for those with Alzheimer's and related dementias. My religious beliefs have informed and amplified my ability to connect to people who have dementia with positive energy, love, understanding, and support. I'll share some of my favorite Bible passages and words from Emanuel Swedenborg here, which have led me in my work.

"Consider the lilies of the field; they neither toil nor spin, and yet I say to you that even Solomon in all his glory was not arrayed like one of these." (Matthew 6: 28, 29)

I read this passage at my brother Martin's funeral service in 1979. Today, it inspires me to remember that even if a person can't say what they want, it doesn't mean they don't want anything. Martin couldn't speak clearly in a way I could understand, but he could pull my hair and turn my face towards his to get my attention. Though I didn't like it much as a child, it was, in fact, his way of communicating with me. With those who have Alzheimer's, I know they have things to communicate, and if I can discover what the message is, or use my best guess and move forward with support and encouragement, life is more satisfying for me and for them. I have spent my life's work appreciating those who need a bridge, a lift, or a hand to communicate who they are and what they want. With preschool-age children and younger, with people who can't speak or walk or live independently, with many elders and their families, my response is the same: to respect and value a person as they are.

"Go and do likewise." (Luke 10:37)

The story of the Good Samaritan inspires me to serve those who need serving. When a person has dementia, finishing their life here, I can do my best to make their day go well, sometimes by giving them space, sometimes by engaging them in good choices, always with hope that their life experiences will sort out for the best. As a caregiver who also needs support, that can come through private caregivers in the home, Hospice groups, or the best friend or another family member who can provide company with the person with dementia while you have some respite. Either way, I found the Good Samaritan story helpful for me, to supporting the life of a family member or one I care for as a professional, to have peace within myself.

"If I take the wings of the morning, and dwell in the uttermost parts of the sea, even there Your hand shall lead me, and Your right hand shall hold me. If I say, "Surely the darkness shall fall on me, even the night shall be light about me..." (Psalm 139: 9-11)

Psalm 139 reminds me that the Lord's support is always available to me. As a caregiver, I strive to be available to those I care for, in gentle, unseen, or cheerful and outgoing ways, depending on that person's state.

A woman I met, Tammy (name changed) shared a story about her mom, who had some form of dementia. Tammy sometimes met with great resistance when she tried to help her mom bathe, or dress, or eat well, or get involved in conversation. She soon realized that these times of resistance came when her mother was spending time in the spiritual world, trying to finish her time on earth. When she 'came back', she apologized to Tammy for her belligerence. Tammy realized her mom was fine, even if it didn't look like it to her, and that she needed to let her mom go. She did, and the resistance eased, from both sides. When Tammy's mom died, she knew she was content, with no more tug-of-war between worlds.

We may imagine those with dementia are in darkness, because they can't always share what's going on for them. This current story brings many experiences back to me as a caregiver: I didn't always get to see what was going on for a person, but I knew things were indeed going on, for that person's highest good. That allowed me to have patience, empathy, and give them space when they needed it.

"You are the light of the world (and put that light) on a lampstand, (where it) gives light to all who are in the house." (Matthew 5: 14-15)

If I have energy, interest, and inspiration to give people who need it, I need to give it. That's what got me out of bed every day for many years, with good will in my heart and willingness to serve a person in every way. Every person on this journey needs this kind of support: the person with dementia, the family, friends, spouse, professional caregivers who joined our community when a person couldn't eat or drink or get out of bed themselves anymore. I am thankful that I have spiritual resources to draw on, which filled my cup to do this work. It was a good way to spend time for me, and good for those I served.

"During our spiritual tests, we are apparently left completely alone, although in fact we are not alone—at those times God is most intimately present at our deepest level, giving us support." (True Christianity 126)

You may know the famous 'Footprints' poem, written by Mary Stevenson in 1936. This came right to mind when I read this quote. When a person needs full care to get through the day, that is what caregivers provide, 'carrying' the person when they need it, even if that person doesn't recognize the efforts.

My approach to care is all about the usefulness that a person wants to be engaged in, even when dementia clouds the mind and efforts. If a person is 'still here', they want to know what they love, what they've done, who they are. The key to my enjoyment and inspiration as a caregiver is learning about people's careers, values, goals and achievements in their lifetimes, and celebrating these elements of their lives in the form of stories, song lyrics, and other ways. It brings life back to life, for everyone.

"Angelic life consists in useful service and in good deeds of charity." (Secrets of Heaven, 454)

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