Late Stage Care for Persons Living with Dementia

Are you feeling wistful these days? Fall has been invigorating, long-lasting and splendidly colorful here in Minnesota, but now, saying goodbye to the leaves and hues and heading into damper, grayer, colder, and inevitably snowy weather does give one pause.

In that pause, I miss my parents, who both died (many years ago now) in the month of October.  I also am thinking a lot about one of my best friends, who is grieving her partner of many years. He recently lost his life to a fast-moving case of Creutzfeldt-Jacob disease, a cruel and devastating neurological Illness. This disease, one of many potential causes of dementia, is so rare that literally one in a million people get it.

In addition, the ongoing pandemic is not particularly cheering up my mood.

In some of our Ebenezer dementia care communities, there are currently multiple people on hospice. There are many individuals whose physical and emotional care needs are increasing.  It seems like a good time to focus in on dementia care in the later stages.

If I was living in a later stage of dementia, and you were caring for me, here’s a few practical tips I would want you to know (the following bullet points contain information found in a wonderful little guidebook by Teepa Snow called  Dementia Caregiver Guide):

• SLOOOOOW DOWN when you are interacting with me. My brain needs more time to process information now. Break tasks into steps. One. Step. At. A. Time.
• I may struggle to understand what’s going on around me. Use MORE GESTURES in your communication to help me out..
• Keep in mind that I AM LOSING FINE MOTOR SKILLS in my hands and fingers, and in my feet and toes too.
• I may have a continued desire for movement BUT LACK THE BALANCE AND COORDINATION to avoid falling. DANCING WITH ME might work better than walking side by side.
• I MAY ALSO BE LOSING FINE MOTOR SKILLS IN MY LIPS, TONGUE AND MOUTH.  I am able to suck a drink and take a bite of something, but please DON’T ASK ME TO DO WELL WITH SOUP THAT HAS CHUNKS IN THE LIQUID, as this could cause me to choke.

Aside from the many physical and cognitive changes that will impact how you care for a person in the later stages of dementia, I think one of the most important things to keep in mind about a person living with late stage dementia is that THE PERSON IS STILL THERE.

I will still NEED CONNECTION, CONVERSATION, ENGAGEMENT, STIMULATION, AND FRESH AIR (oh please, let me feel a bit of breeze, a light rain, and a few snowflakes).

Just because I am speaking less doesn’t mean you have to stop speaking to me.  Go ahead and tell me about your day or the weather. In addition, be sure to compliment me, share an opinion, and talk about something that means a lot to me. Let me know from time to time what I have meant to you. Don’t be afraid to just be quiet with me sometimes. I can become easily overstimulated and will need my “down” time.

Just because I may not initiate touch doesn’t mean I don’t need touch.  Massage my hands with lotion. How about my feet? Hold my hands, both at once!

Just  because I don’t burst into song anymore doesn’t mean I don’t want to hear my favorite songs coming out of your mouth, or out of a CD player.  (“Alexa” would be very handy when you need a particular piece of music to play for me right NOW!)

Just because I can’t move every single part of my body doesn’t mean you can’t help me move whatever I CAN still move.  Movement is the best thing we can do for our brains, after all.  We all crave it, and you better believe I will become agitated and restless without it, no matter what my movement limitations are.

Maybe I don’t  say your name anymore.  Please don’t take that personally.  Check the light in my eyes when I hear your voice.  I may well still recognize you as someone I know, love and trust.

When I visited  my 91-year-old mother (who was on hospice for well over a year) a few months before she died, I hadn’t seen her in some months.  She was no longer very verbal, but when I greeted her she cocked her head to one side and looked at me intently with such soft eyes, eyes filled with profound and unwavering love. That look was a gift I carry with me always.  I was absolutely sure she knew we were connected, and the comfort this gave me is still palpable.   

Mom used to tell a story about my dad and my big brother, Bob, whose assigned household chore was to take out the trash. Bob had gleefully figured out a fun way to empty bags of trash with great finesse by simply tossing them down from the landing outside our kitchen door towards a waiting open garbage can next to the garage at the end of our sloping driveway.  I’m pretty sure my dad hadn’t thought much of this new routine and was waiting patiently for Bob to learn his lesson. Sure enough, one time, my brother missed the “basket” with a big bag of kitchen garbage, and naturally the bag exploded all over the driveway. Mom and Dad, who were watching, thought this was hysterical. Mom would always laugh heartily at this point in the story. Not sure my brother Bob was laughing as he cleaned up the mess, but Mom sure got a kick out of retelling this, again and again. As her dementia progressed, I noticed she wasn’t bringing up that story as much. So, I would begin telling it. She’d take over just before it got funny, and she’d crack herself and me up describing the flying garbage and all the laughing that ensued. Eventually, I noticed Mom didn’t bring up the story at all anymore. So, I told the whole thing to her. She’d smile big at the ending.     

Whatever the physical, cognitive, or emotional challenges may be for people living with dementia in the later stages, we must not give up on these individuals, or discount the spirit that still exists.  Instead, we honor them by helping them  compensate, following their lead, anticipating their needs, adjusting  the level of support needed, and providing engagement.  Accept them wherever they are at. Validate their feelings.  Reassure, comfort, and fill in the blanks when necessary.    

-Marysue Moses, Ebenezer Dimensions Program Coordinator, mmoses1@fairview.org