Many of us have had or will have a loved one with Alzheimer’s disease or another form of dementia. Question: Do you know how your loved ones want to live their lives if they were unable to express their wishes?
Examining how they lived before dementia will help provide the answers. If the individual enjoyed listening to hymns and reading their Bible, it’s important to find ways for them to continue having a sense of God’s presence. This can be done by playing their favorite hymns and reading familiar Scriptures—such as The Lord’s Prayer, John 3:16 and Psalm 23.
If they loved being outdoors, they will want to spend time in nature—even if they cannot tell you so. If helping others brought them joy, try offering opportunities to assist with daily tasks. Drying dishes, folding laundry or pulling weeds are activities that could provide a sense of accomplishment if they feel they are truly helping. Encourage them to assist even when their efforts are imperfect.
What about fun? If they loved dancing, painting or playing with children or animals, is there a way to incorporate those things into their daily lives? Some activities may require modification, but they will appreciate them. If their idea of fun was watching Wheel of Fortune and Jeopardy, they’ll probably still enjoy those programs whether they can guess the right answers or not (and who among us knows all the Jeopardy answers anyway?)
My father taught himself to play piano when he was young. He never learned to read music, but enjoyed playing by ear and could play any song after hearing it once. It was a sad day when he stared at the keyboard, confused about how to begin. But when my stepmother programmed the chords into the electric keyboard, he was able to play along and continued to do so long into his dementia journey.
We all cherish our right to make choices; that includes people with cognitive challenges. When dementia is severe, it may be necessary to offer only two choices. “Do you want to wear the red sweater or the blue one?” “Would you like to help me with a puzzle or go outdoors?” It may take considerable prompting to get them to answer, but at every stage of dementia, individuals should be given the opportunity to make decisions.
Even though my dad suffered increasing confusion, when he started hospice care my stepmother and I consulted him about end-of-life issues. Although she was his Power of Attorney for Health Care, we asked his opinion about a DNR (Do Not Resuscitate) order. We explained that CPR would not be performed if his heart or breathing stopped. Dad replied, “I don’t know how long I might want to live, so bring me back to life.” Although the hospice staff disagreed with that decision, Barbara did not sign a DNR. If Dad had said he didn’t want to be revived, we would have respected those wishes too.
When we love someone, that’s what we do; we respect their wishes even if we don’t agree with them. Dad lived quite a while after that conversation. It’s up to us to determine as nearly as possible how our loved ones with dementia want to spend their lives as well as their end-of-life.
We should consider these things for ourselves too. We should let people know how we choose to live life if dementia befalls us; what we want to eat, read, what music we want to listen to and what activities we want to be involved in. I’ve put in writing my favorite hymns and 60s music, TV shows and preferred foods and drinks. I included things I dislike—just in case I’m unable to express myself in the future (do NOT feed me sweet tea or lima beans!)
The number of years we have is in God’s hands, not ours, although we may have an idea how long we expect to live. Several of my young co-workers were discussing how long they wanted to live. Most said 80 was long enough (we’ll check back with them when they’re approaching 80). I said I planned on living to 104. Their reaction: “Why would you want to live that long?”
I have two reasons: one - I told my friend, Margie, I planned on living to whatever age she lived to, which turned out to be 104; two - I can’t write a tell-all memoir until my friends and family are all deceased or in nursing homes.
That’s my plan, but you can check back with me when I’m approaching 100. In the meantime, consider your plan.
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Diana Walters has enjoyed a long career working with senior adults as social worker, activity director, and volunteer coordinator. She recently retired (at age 76) from paid employment and is now able to devote more time to her writing and her husband (in that order?) She has written devotionals for The Quiet Hour and Upper Room and been published in six Chicken Soup for the Soul books, but she is excited to be writing for and about her fellow Baby Boomers. She can be reached at dianalwalters@comcast.net.