This month, I am sharing my blogspace with David Cobb, BCC, Director of Spiritual Health at Martin Luther Campus in Bloomington.  Thank you, David for sharing your insights about caring with us here!  Yes indeed, we are in this together.  --Marysue Moses, Dimensions Program Coordinator
 
The day I walked in to the Martin Luther Care Center with a big purple cast on my arm, one of our residents (I’ll call her Peg) asked me what happened. “Ruptured biceps tendon,” I explained.
 
Peg winced for a moment, then grinned mischievously. “Now you know what it’s like for us!” she said. Well, maybe a little.
 
Things I can’t do easily right now: button my shirt, tie my shoes, slice a watermelon, type. Things I can’t do at all: ride my bike, mow the lawn, carry a grocery basket; tie a tie, wear long sleeved shirts, serve communion.
 
There’s plenty I can still do, of course. And there’s little doubt I’ll be able to use my arm again. But it’s not hard to imagine how hard it is for our residents to adjust to each “new normal.” Especially when the challenges are more permanent and mind, body, and spirit don’t heal like they used to.
 
Any unexpected shift in autonomy, sense of identity, connection to others, or meaning/life balance indicates a potential source of spiritual distress. As a chaplain, I have the privilege of helping residents and their families identify their distress and develop ways to cope with the challenges they face. Some have given up a home and its accompanying sense of place, a job and their role in providing for their family, responsibility for a pet, control of the kitchen, or the camaraderie of poker night with the boys. Such losses can trigger anger, shame, despair, anxiety, loneliness, or fear.
 
I’m not happy about my injury. It’s going to take a long time to heal. But it’s making me more aware of the spiritual distress our residents feel when moving onto campus, and as their physical conditions and relationships change over time.
 
Peg asks about my arm each time she sees me now. I try not to over-share. But it reminds me that some of our residents have a spiritual need to care for others, just like we care for them. We’re in this healing and wholeness business together.
 
Hmm, maybe that’s why we’re starting to speak about being not just care-givers but care partners. I wonder how you become a partner in care?
 
--David E. Cobb, BCC, Director of Spiritual Health, Martin Luther Campus

Apathy. It’s one of the approximately 500 symptoms you might well find under the umbrella term of dementia.  According to Microsoft Word, apathy’s synonyms include lethargy, boredom, unconcern, droopiness, and dispiritedness. For a person with dementia, this state of being may result in the inability to initiate activity, and/or spontaneous thought. Many of us, when feeling bored or droopy, have the ability to switch gears, maybe go for a walk, call a friend, or otherwise think of some activity to cheer ourselves up. Persons with dementia may not be equipped to do that. Instead, they’ll need structure, routine and activities figured out by others.  

Initiating activity involves planning, organization and motivation. Planning can be complicated, involving lots of steps.  For a person with Alzheimer’s disease (whose short-term memory is very limited) or for a person with frontotemporal degeneration (whose executive function is seriously compromised) “complicated” can easily translate into “overwhelming”.  When things are too hard for a brain with dementia, frustration often results, and motivation dissipates.  

To be sure, it can be hard to observe and absorb these changes when a family member was formerly a champion self- starter; creative and keeping busy all the time.  We have to remember that the changes of dementia are disease-related, and brain-based. It is not because the person is just being stubborn, difficult, rebellious, or is out to exasperate us.  The person is simply reacting to their situation with the brain that they have to work with today, not from the brain they used to have. We must have compassion for the reality of a broken brain, if we are to give care and responses that will encourage and accept the person where they are at, and in so doing continue to strengthen our relationship with that person, and best serve their needs.  

Here are ten tips from the Association for Frontotemporal Degeneration about what you as a care partner can try when your family member with dementia exhibits apathy. These suggestions were created specifically for persons who care for those with frontotemporal degeneration, but I believe there is much here that can be helpful to those who care for persons living with other forms of dementia as well:

1. Check your emotions – do your best to maintain a positive tone.  An angry annoyed tone will be understood by the person with dementia, even if your words are not. 
2. Practice patience.  People with dementia may need extra time to process information and to respond.  
3. Develop activity interventions that are based on the needs and interests that have motivated the person in the past.  Be sure to modify past interests to current abilities.
4. Keep things simple.
5. Do not rely on verbal cues and communication alone.  When you think about creating activities that might spark interest for someone, consider things you can show the person, music or sounds they can listen to…What might you just put in their hands, without any words?  See what happens!
6. Introduce multi-sensory stimulation one sense at a time, so it’s not too overwhelming.
7. Start an activity together, (folding laundry, putting away dishes) standing side by side.  Let the person continue the activity on their own. 
8. Plan personal care at the person’s best time of day.
9. Provide just one or two choices to limit overwhelm. 
10. Remember that a bored expression doesn’t necessarily mean that the person derives zero benefit or enjoyment in the activity.  Remember too that apathy can come and go.  Look for the openings, and use those opportunities to best advantage.

This blog is based on information taken from a publication called Partners in FTD Care (8, WINTER 2018), available through the Association for Frontotemporal Degeneration, 267.514.7221, www.theaftd.org   
--Marysue Moses, Ebenezer Dimensions Program Coordinator