I’m the son, Custodian, and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, besides herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services. My problem is to understand what my mother wants for herself and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present. Continue reading “Precision Prism”
Here’s the reference I didn’t accept on LinkedIn:
He’s seriously annoyed with his disability, full of himself and his opinions and perceptions about life and health. Blogs every week whether or not he has anything to say. Can’t keep a job. Has the attention span of a gnat, flitting from one thing to another. Needs significant help focusing and limiting the scope of his work. Moves way too fast, going for the latest shiny thing, tested, proven, or not. A major joiner. Set some limits for Pete’s sake. Sits on expert panels without real expertise in anything. Has to keep lists of books he’s read so he doesn’t read them again, but forgets to check his list. We’ve always done it this way is a red flag for him. He should shut up and listen for a change. Has a loose relationship with the truth. Would rather tell a good story. Needs a fact checker. Loves to say, God willing and the creek don’t rise. Where does he think he is? W Virginia?
OK, he’s sort of disabled. Takes advantage of his get-out-of-jail free handicapped parking placard. After all, he can walk a couple of blocks. Frantically trying to stay healthy. Massage, acupuncture, chiropractic, counseling, meditation. Give it a rest already. Cut his foot with a chain saw when he was an ED nurse and paramedic. Then he went to his son’s second grade class to teach first aid Doesn’t know the meaning of safety. A truly strange bird. Was in the movie, Woodstock, when he was 17, calling his mother. Now 63, he’s still a momma’s boy. Was in a Life magazine cover story, You’ve Come a Long Way, Buddy. Men’s Liberation. For real? Can’t lie to save his soul. Don’t know about diversity, he’s prejudiced against stupid people who can’t get anything done. Can’t stop talking about his grandkids. He’s a boring Johnny one-note. Thinks he can play saxophone. Please! Loves to dance – in his head. Who is he fooling? Pokémon illiterate. Just ask his grandson. Does laundry and takes out the garbage, but doesn’t cook enough. Leaves the entry way door open when it’s freezing outside. Appreciates clean running water and weekly garbage pickup. Every week! Give it a rest already. Built a house with his wife without ever having built anything before. Lord, get some experience before you go off halfcocked. Won’t stop correcting lab technicians who ask him to confirm his birthdate that they read to him. Arrogant. Still hot for the same woman after 40 years – get a life. Balding, needs a hat. Any hat, doesn’t care.
I know it’s tough to get a job as a disabled person. But, hire this guy? Be very careful, count to 10.
I went to a meeting in Chinatown attended by parents with children on the autism spectrum going to Boston Public Schools. The attendees spoke Mandarin, Cantonese, Vietnamese, English and Bureaucrat-ese. The parents helped each other advocate for services for their kids. Most only spoke one of those languages. After 2-3 minutes of speaking in one language someone would raise their hand and there was cross translation by the 2 or 3 people who spoke more than one language. This repeated for about an hour. I went home and my 7 year old grandson tried to teach me to play Pokémon. I understood less than I did in Chinatown. Opa, you don’t understand this at all!! Continue reading “What’s Pokeman Got to Do With It?”
Spread the rest of Mom’s ashes with my Dad’s in Grosse Pointe, MI, joined by some dear friends. He was her soul mate. They died 43 years apart. As she would have said, it was a great party. too bad I couldn’t be there. My narrative about my mom is still quite fluid. Sometimes she’s amazing, loving, and engaged – all in. A pathologically optimistic survivor. Other times a reluctant, troubled, somewhat abusive mother. At the end she was a hoot — and the stories follow. Mostly, I think how alike we are. I’m loving, amazing, troubled, optimistic and a hoot. Narratives are coloring books with pages of the same outline, colored with different crayons, paints, markers, within the lines, outside the lines. I’m alternately relieved and uncomfortable with the narrative of troubled mother. Sort of like the narrative of me as disabled rather than healthier than I’ve ever been (except for the MS). Troubled and disabled are true. I just can’t live there for too long – 5 minutes as a time? I’m affected by other people’s narrative about me, especially negative ones. When I’m strong, my positive narrative trumps, when I’m weaker, the negative narratives wear me down. What narratives do you have about yourself and those in your world? How do they affect you and them? Narratives are certainly magic levers of best health. Oh, ma, the narratives of you are spiced with love. I miss them all.
I’m reading Scott Simon’s book, Unforgettable. A son, a mother, lessons of a lifetime. Beautifully written and so close to home. Scott Simon’s book resonates for me. It’s been four months since my mom died. Like Scott Simon, I, too, laid next to my mom in her bed telling stories. Before dying I was grossed out at the idea of laying in bed next to her. Now I treasure those moments. I feel her loss everyday. Actually, it’s almost every day now, not every, every day. I resent that it’s not every day. Last November I was so upset that the 11th anniversary of my boy, Mike’s death passed without me remembering. I cherish the bittersweet sadness and the exquisitely tender spots of these memories. What have I become when I forget those who color my tapestry? Yet I am recovering. Very slowly regaining my strength and my center. The surrealness of loss and grief subsides inch by inch. Thank god. I couldn’t stay floating in that ever-deepening well of grief. Grief is again becoming a quirky, intriguing companion. Oh ma, where are you now? Do you have more stories for me? I have so many for you.
In January I wrote about the magic lever of organizational culture change (link). Today I’m preparing for a nursing leadership seminar about organizational culture and change for people who lead teams in much larger organizations. While I mostly want to hear from the participants – sharing experiences has much more value than anything I could share – I have the following pearls:
- Be the ideal – act as you expect others to act – the golden rule. Simple but tough. You have most control of this
- Hire for culture – You can train skills, but you can’t train for attitude. The best opportunity is at hiring.
- Leverage diversity -build different skills, ways of thinking (Myers-Briggs), and life experiences into your team.
- Experiment, learn with your teams – who knows what will work? Try stuff out. If it doesn’t work try something else
- Engage patients & caregivers – it’s the right thing to do, but it also changes the conversation dramatically
- Be transparent with information – Whether you have grade A or grade C data – share it. Let people comment, criticize, engage. Tell stories. Welcome scrutiny.
- Market the change – You can’t change everything or everyone, but you can change the people who matter (the link takes you to Seth Godin’s blog)