caregivers Archives - Page 9 of 12 - Danny van Leeuwen Health Hats

Shrinking world, shrinking control.

By | Caregiver, ePatient, Family man | 12 Comments
Shrinking world, shrinking control. As my mom progresses through this ending period of her health journey, she needs more and more help with the basics. She demonstrates her customary approach to life by extending her arms out wide. Now she shows her life by hugging herself. It’s all about me now. She wants to finish her goodbyes and be pain-free. She hasn’t let go of concern about her safety.  With 24/7 care, one caregiver is her friend. They trust each other implicitly. The others – agency caregivers – can be familiar, trusted regulars or people present one time for one shift.  My mom checks her meds carefully. Even wanted a watch with bigger numbers on the face so she could check the time for meds. She checks every pill. She calls me or my sister if she’s not sure. Pain medicine is a challenge.  The agency caregivers can’t really give medications, they can only show her the meds in the pill-box or pill bottles and then put them in her hand to take herself. She has to ask for breakthrough pain meds and feels unsure of her allowed schedule. The tension between pain relief and lucidity. This tension increases as she anticipates my son’s and my visit next week. Wanting to be pain free and lucid for us. Actually, she’s a tough old broad, vital signs stable, laughing sometimes, watching Blue Bloods with my sister. Seems like my mom’s defining features come out in high relief during this period. Courage, resourcefulness, not wanting to be left out or surrender control, humor, adaptability, perseverating, love for family and friends. Tart and sweet. Wise and child-like.  Shrinking world, shrinking control. Oh, ma.

Humor in a Once in a Lifetime Experience

By | Caregiver, ePatient, Family man | 7 Comments

Today my mother said this was a once in a lifetime experience. Ha. What a sense of humor.  Last week she talked about the 5 P’s of her life – Pillow. Pee, Poop. Pill, and Pain. I’m laughing and crying.  Six weeks ago she went to the orthopedic doc wondering about her sore knee.  She didn’t want surgery.  He wrote her a prescription: You can dance. Then he told her if it hurts too much, do less the next time.  This morning I asked her what she was doing for fun. She said talking to me and my sisters. When I reminded her about the ortho prescription, she said, I could still dance with Loretta-a few steps anyway. Once in a lifetime experience.

Journey’s end – Goodbyes

By | Caregiver, ePatient, Family man | 12 Comments
My mom is saying goodbye. Goodbye to family, friends, and now peripheral health team members. She hates goodbyes, more than dogs. She’s been mortally afraid of dogs since a german shepherd jumped on her when she was in hiding more than 70 years ago. A deliberate end to the journey. She’s giving away her possessions, too. Mind sharp, energy flagging, pain surging. Yen for everything, yet eating mere morsels. The 8-year-old in her 62-year-old boy tells her to finish everything on her plate. Heart wrenching to hear her say goodbye to immediate family especially the guttural sobbing when they leave. I just left, going home across country, returning in 3 weeks when my oldest son comes.  She’s waiting for him. Then, she says, she’ll have had enough. I couldn’t say goodbye. I’m not ready. Makes sense that this fighter throws in the towel. A holocaust survivor, my mom was an expert denier. No denial now.  “I’m old. I wouldn’t survive chemo or surgery. Let’s call it a life.” Some end the journey suddenly – heart attack, trauma, aneurysm. Some fade with dementia. Mom is going to call it a life after her goodbyes.

Tension between rights and safety

By | Caregiver, Clinician, ePatient, Family man | No Comments
My mom is failing – pancreatic cancer. I’m struggling with the balance between her desires and her safety.  I firmly believe in Empowered, Equipped, Engaged, Enabled individuals on the health journey: e-patients as described by the Society for Participatory Medicine.  I also believe in Using Power Honestly, Wisely, and Respectfully as written in the Advocates Way of Advocates, Inc.
So when my mom says she doesn’t need help, yet I see that she’s unsteady, has had several near misses – almost falling, wants to stay in her home, and has varying degrees of self-awareness, mental abilities, I’m concerned about her safety and ability to make a safe decision. Thankfully, we avoided disaster, after coordinating with several people to be with her and offer the same feedback: You need 24/7 help. In a period of clarity she agreed and now feels relieved.
This tension between rights, dignity, and safety repeats itself everywhere. I experienced it as a parent, as a nurse, as a patient myself, and as a caregiver. I didn’t let my grandson run across the street, rather holding his hand and instructed him in good crossing habits. For ourselves and those with whom we share the health journey, we can acknowledge the tension with mindfulness and respect and get help maintaining that balance.

Fear on the Health Journey

By | Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist | No Comments
Fear – an unwelcome, yet familiar, occasional companion on the health journey. A sinking feeling in the pit of your stomach. Your mind racing, reliving dreaded possibilities. Anxious panting with dreams of careening out of control. What helps? A certain companion, prayer, a drug, meditation, comedy, music, time. When I’m afraid, my family’s reassurance, a loving, lingering embrace, belly laughs, imagining my son, Mike, his arm around me, sitting with our feet dangling on the bridge to our WV home, listening to the creek rush below. The human condition contains fear – it’s inevitable. Knowing what works and what doesn’t when scared is more likely needed than your blood type or diagnoses. Why doesn’t the health team routinely keep track of this? It should be on a card in your wallet.

Journaling – Experimenting

By | Caregiver, Clinician, Consumer, ePatient, Leader | 3 Comments
Journaling came up several times this week. Nurse leaders in a Leadership Academy spoke about change efforts they were making at work to increase involvement of patients, reducing noise in the hospital, trying to help their teams work better together. I spoke with someone facing increased symptoms also receiving more and more friendly, loving advice about treating those symptoms from professionals, friends and acquaintances. Each of these people could benefit from journaling. Life is a continuous experiment. Keep trying stuff – some works, some doesn’t. I find it helps to keep track in relative real-time. Going back to see where I’ve come with information to pass on to colleagues and caregivers. Journaling is writing it down – on paper or electronically. If you hadn’t noticed, this blog is a very public way for me to journal.  So, with the nurse leaders, journaling is taking a moment periodically, every day or week, to jot down emotions, activities, responses, movement, barriers. For the person at the center of care, jot down symptoms, what makes it better, what makes it worse, what you tried, what was suggested that you didn’t try, what would you like to try? Check out DayOne Journaling if you have an Apple device.  Paper is always good, too. If you are a caregiver or friend of the person at the center, offer to keep the journal for them. It’s a bridge builder.


By | Advocate, Caregiver, Clinician, Consumer, ePatient, Leader | One Comment
I went to my primary care doc last week for some blood work. The best practice means of checking a person’s identity is for the professional drawing the specimen to ask a person their name and date of birth and confirm that these are the same as the order/prescription and label. The technologist did not. When I suggested that she follow this practice, she was clearly annoyed with me.  I spoke with someone yesterday who was in the middle of an ultrasound and the technologist asked, “Oh, are youxxxx?  I forgot to check.”  These occurrences are low risk (unless you need another stick because the wrong blood tubeswere used or the resulting diagnosis is really for someone else). But it’s a good habit to expect confirmation of identity when somethingis done to you.

I also have been participating in my Town Disability Commission as a citizen volunteer. I’d like to be appointed as a member.  I’ve found that the selection process lacks transparency-every citizen does not have an equal chance to be considered or selected.
Both these stories reflect on the challenge of advocacy.  How do we stick up for ourselves among well-meaning people who don’t follow best practice. I find it difficult to advocate. I don’t want to be a pain. I’m a bridge builder, not a fighter. I’m at my best when I focus on the prize.  In the first example, I tell the lab person that confirming identity is critical – to me and to her. What a shame (or how devastating) in the rare instances its wrong. For the Town, being sure that the town follows its published practice, that all citizens have equal opportunity to take part, and that access for the disabled in improved. How far do I go?  The most passionate advocates seem to have been burned by a bad practice. I want to avoid that for me and mine.

Managing Pain

By | Caregiver, Clinician, Consumer, ePatient, Family man | No Comments
Several blog posts these past weeks on pain management. Read one here from Engage the Patient.  Everyone has pain.  Some are called stoic, some sensitive. I remember when my son, Mike, had a lung tumor removed.  Curled up in a fetal position, hardly able to breathe, he told a nurse that his pain was a 6!! A six?! How could that be? I was talking to someone this week, recently diagnosed with pancreatic cancer, about a new sensation in her abdomen – a pressure. As we explored the new sensation, she said, it’s not pain. It’s a pressure in the morning. It travels, one day here, the next day there in my abdomen. It doesn’t affect my life. It’s annoyingly noticeable. Gets better as the day progresses. I’ve found for myself, that becoming one with unpleasant, unwelcome, strange sensations helps me manage and not freak out too much. For me its neuropathy – electric, radiating tingles or zaps often in my hands and legs, sometimes elsewhere, lasting moments.  Seriously annoying, but doesn’t affect my life. Nowhere near as bad as a toothache. Acupuncture keeps it at bay, reducing intensity and frequency. It’s good to be intimately knowledgeable about pain and share that with your health team. What’s it like? How has it changed? What works to decrease it? What doesn’t? Some people welcome help understanding their pain better. Shouldn’t pain sensation, what helps and what doesn’t be core health information – included with medications, health team members, diagnoses, and procedures? I have found that people at the center of care get this, most health professionals and information technologists don’t. I’m sure they or their loved ones have pain too. What’s missing here?

Expanding Engagement and Capabilities of People at the Center

By | Advocate, Caregiver, Clinician, Consumer, ePatient | No Comments
Some people want someone else to be the leader in their health care journey. Others take offense if anyone even hints at taking that lead – with every stripe of variation in between. Same goes for using technology – some seek technology and use it, for others it’s not even in their universe of thought, some depend on team members to manage their technology.  Think [hearing] aides, apps, spreadsheets. For those who are health professionals or family caregivers how do we know where an individual lies on the continuum of engagement and capabilities and what do we do with what we learn with those persons whose team we are on? 

Health Affairs published a framework for engagement in February 2013. The levels of engagement are Consultation, Involvement, Partnership and Shared Leadership.  Seems like both ends of the continuum are left off: Apparently NOT involved on one end and Sole Leadership on the other.  Both ends are tough.  I say apparently not involved because no one could have asked, cognitive and language disconnects could be present, or there’s complete inability or wish to take part. Sole leadership by individuals is still largely outside the experience and frame of much of the health industrial complex. Completely taking charge either with or without professional consultation can be pretty foreign to many team members.
Using technology is similar. My grandson learned to use an iPad in 45 minutes when 2 years old.  My 87 year old mother is just now texting after having a cell phone for 5 years (she only turned it on when she wanted to make a call). Ma, I know you’re reading this 🙂
As I explore the possibilities and variation of the worlds of people at the center of care, I want a quick and simple assessment scale that professional and lay team members can use to gauge where the individual lies on the engagement continuum and once known, how can the team member best be helpful to that person – helpful maximizing health or helpful with movement along the continuum to increase control, increase decision-making, and increase tech capabilities?  Do any of my dear readers have experience with this? What helps us learn about engagement and capabilities and what helps us do something with what we learn?  Maybe one of you already have this down. If you do, does it help?

Caregivers Have Other Lives Too

By | Advocate, Caregiver, ePatient, Family man, Leader | No Comments
I’m amazed at what people are capable of. This week I met a nurse leader who manages a neonatal intensive care and transport unit while mothering 5 children (one of her own, 3 adopted and one foster) – I spilled into amazement when she couldn’t meet with me at a particular time because she had Rotary obligations. I was on an airplane and met someone who cared for her ailing, rapidly dying husband, was the sole family earner, with only spotty help from family. She was on her way to a short-term paying gig. I hear stories like this when I meet caregivers.  Caregivers have other lives too. Are all these people saints? They would all say, what else would I do? It’s done for love, sense of obligation, inertia, no choice, who knows. Still, 93 million caregivers in the US. As Don Berwick, candidate for governor of Massachusetts said to me recently, it’s by far the largest health care workforce in the country. Do you know the caregivers in your midst? They’re everywhere. It’s like walking with a cane-suddenly you see all the people with canes.
I’m reading a book, The 7 Habits of Highly Effective People by Stephen R. Covey. Some highly effective people are caregivers.  Some caregivers are highly effective people. Covey talks about delegation. Effective people delegate.  Effective caregivers delegate. Many people have a few minutes to help the helpers. Effective caregivers know how to delegate: shopping, laundry, errands, sitting, accompanying, cooking, cleaning, on and on. Really, though, most caregivers are stuck with caregiving. With no societal support, no help, no relief. If 1% of caregivers, 930,000 people, couldn’t caregive, Medicare and Medicaid would go broke. (At a conservative estimate of $5,000 per year in additional cost, that’s $4.65 BILLION per year). You policy wonks: what do we do now?  This number will only increase.