There’s a saying I’ve learned to invoke when personal or work relationships get sticky: assume positive intent. This applies to email messages, IMs, social media comments and face-to-face encounters during which the message could be construed as coming from a negative space.
“As previously discussed, please send the TPS report by COB. Today.”
“You should think about how others perceive you during meetings.”
“You have a beautiful smile. You should use it more often.”
You are going to get a lot of advice—much of the time unsolicited—throughout your care journey. Your emotions and reactions may range from shocked to indignant to furious in a matter of minutes. I gained traction in applying the positive intent filter over time, but it wasn’t easy. And I had to learn that even if the advice giver thinks they are coming from a positive place, the advice and its effects can sometimes be hurtful or even dangerous to your emotional well-being.
As an example, the false hope instilled by the mere mention of my mother “walking again” had devastating long-term impacts on my mental health and well-being. It was statistically and medically impossible for my mother to regain use of her arms, legs, hands or feet once the M.S. took over. Her primary-progressive condition is present in less than 1% of M.S. patients and is more like ALS in its irrefutable decline. Even though I knew this, hearing people tell me what they thought to be evidence to the contrary gave me a self-destructive glimmer of hope and prevented me from fully accepting the situation. Put differently: this damaging language prolonged my denial, making it impossible to move forward. Imagine hoping for something that will never, ever happen. It is much better to accept and move forward constructively.
Easier said than done, of course. The first step is identifying the camps of people you are going to need to deal with on this journey. Here are some examples of things people “suggested” to my family during the twenty-five years we cared for my mother’s uncurable, primary-progressive M.S.
The Non-Believers
Ordinary folks of all stripes who refuse to believe your loved one has a condition that will deteriorate over time, of which there is no cure. Often guilty of comparing the disease to an unrelated one or a variation that your loved one doesn’t have.
“You know, there’s a new diet book about curing M.S. It’s all about what you eat.”
“M.S. is a mental disease, isn’t it? Maybe a shrink can fix it.”
“Taking your Mom to the chiropractor will help her to walk.”
“With the right physical therapist maybe your Mom could walk again.”
“My aunt had M.S. and couldn’t walk for two years. She’s cured and walking now!”
The Have-You Tried-ers
Self-proclaimed medical professionals who have all the answer based on something they read or saw on TV.
“My friend's mom's brother tried drinking pickle juice upside down for three weeks and it totally cleared up his neuropathy! And my great Aunt Sally's brother from another mother cut out wheat, butter, soy, sugar, alcohol, and basically anything other than water and her colitis is nearly cured!!!” (Did someone really say this? Not quite. But it felt like it.)
“Have you tried Reiki therapy?”
“What about hypnosis?”
“Have you tried sensory deprivation training? Like in a dark cave-like pool?”
“Have you considered moving to a warmer climate?”
“What about weight training?”
“CBD?”
“THC?”
“PCP?”
“Cortisone shots?”
The Eternal Do-Gooders
Religious types, often Catholic, who believe that—praise Jesus— their prayers will save you. They may be people you know or complete strangers. Whether at the grocery store, in church or at virtually any public place, they may stop you, touch your shoulder, lean in to your loved one and “heal them”.
“I’ll pray for you.”
“Can I pray for you?”
“Praise the Lord for those who suffer. They shall inherit the Earth!”
“It’s God’s plan.”
“Bless your family, you’re in my prayers.”
And, popular on social media: “Sending prayers.”
The silver lining to all of this is that there is one group of people who will outshine all the rest; who will provide real help, hope, guidance and support. I call this group of bad asses:
The People Who Save Your Life
The actual humans who make it possible for you to live— the neighbors, friends, caregivers, and volunteers who band together to make life operationally possible and, above everything, enjoyable.
In my family’s case, this group expanded over time to include a few dozen individuals we knew we could count on for help and support, often at a moment’s (or hour’s) notice. They understood our situation and respected our choices. They listened to our needs and only offered advice when asked. This group included neighbors, friends, relatives and paid caregivers. I could (and should) write a book on everything they taught us, on all of the gifts they unknowingly bestowed upon us. They became our heroes and confidantes, our angels in white.
You will find the people who save your life, and they will drown out the noise. I have featured a few of the friends who not only helped my mother stay in her home in Allen Park for many years longer than we thought possible, but also helped prepare the house for sale and move us out. I call our incomparable circle of caregivers “Carol’s Crew”, and am forever grateful for their generosity and kindness.