(Note: Healthcare marketers and communicators have always fallen short when it comes to developing a deep understanding of the patient and caregiver’s mindset. The recognition of that failing is what motivated this post.)
On June 11, 2012, my father sent this letter to all five of his children. My mom had been suffering from dementia for a number of years and her condition was worsening. My dad would eventually pass in 2014 and my mom would follow him in 2015. This letter provides an inside look at the perspective of a caregiver – exhausted, grieving, but unrelenting. I’ve hung on to this letter for seven years, and now I think it is time for my father’s message (and emotion) to be shared. It is presented here with only minor edits to help with readability.
Happy Father’s Day.
This note is to each of my children. You are strong, loving, and busy with one or more aspect of life. Now each of you has a new role to play as the adult child of an elderly Alzheimer’s victim. You and I share new challenges. I’d like to set the stage, lay out a few ground rules, and focus on what we face and what mom faces, frightened, scared, and sometimes lost.
As the disease progresses, Mom’s “condition” will worsen. She now has trouble with her short term memory – names get lost, recent events were never observed, visits are forgotten, plans have never existed, and love is sometimes forgotten. You may become frustrated, upset, and greatly concerned. That’s to be expected.
I urge you to never show anger. If mom is wrong, angry with you or all of us – if she denies fact, if she has forgotten the obvious or fact – none of it is out of meanness. Her memory machinery gets out of wack – her mind is playing tricks on her, unknowingly and you or we may appear to be her victims. Please do not react harshly, no need argue as it will not benefit mom or you. To argue would be to attempt to prove you are right and she needs to be corrected. Help mom and yourself as this new stage presents itself. Alzheimer’s patients are brought to anger easily, even rage may be expected. Love can be expected, too. Compassion and understanding are essential as we each experience new emotions, trials, adventures, and opportunities to enrich our wonderful family life.
I recently found myself saddened by an “event,” upset to say the least, but then for some unknown reason the song “Scarlet Ribbons” came to mind. I recalled your mom sitting on the side of a child’s bed singing quietly to one of you. I’m a lousy preacher and I ask a lot of all of us – but the time is right for us to sing to mom, your version of Scarlet Ribbons. It will be good for you, good for me, and wonderful for mom. You don’t need to sing out loud, just let your heart and mind know. They know the tune; they know the words.
For me to thank God for you each day as I ask God to help mom and me continue to rejoice in our love and family – that’s good stuff! I’m glad we have each other with all of our differences and let’s rejoice in the fact that we have mom to care for. I’ll help all I can. We have mom to understand, I’ll help with that as well.
Earlier this morning I went into the bedroom to wake mom. After a moment or two adjusting to consciousness, she asked: “What are you going to do with me?” I replied: “Love you and take care of you, and you will love me and take care of me.” She nodded in agreement. I like that.
When I heard my child in prayer
And for me some scarlet ribbons
Scarlet ribbons for my hair
All the streets were dark and bare
In our town, no scarlet ribbons
Not one ribbon for her hair
And just before the dawn was breaking
I peeked in and on her bed
In gay profusion lying there
Lovely ribbons, scarlet ribbons
I will never know from where
Came those lovely scarlet ribbons
Scarlet ribbons for her hair