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

Labels – DisLabels

By | Advocate, Caregiver, Consumer, ePatient | 3 Comments
I’m disabled.  Iidentifyashaving a disability.  Someone else says I’m disabled. Do Ihave a disability? I’m a family caregiver of someone with a disability. Do I have lived experience? What does all this mean? This week I found myself in several conversations about disability. One was with a person newly diagnosed with a chronic condition facing a significant impact on his life who feared he was now disabled. Another conversation was about what constituted lived experience – frequent hospitalizations, a family caregiver, a person in recovery, a person with a physical disability who remains highly functioning, someone dependent on others for many activities of daily living? The population is aging. The longer one lives the more likely they are tohave a disability. Sometimes two people have the same challenges in function – one identifies as disabled, the other doesn’t. One town considers only limitations in locomotion as a disability, others include other challenges.

Closing the loop – the last P – Parting

By | Caregiver, ePatient, Family man | No Comments
Closing the loop with grief. The P’s of dying pile up – the first six P’s from my mom, the last two from others: Pillow, pills, pee, poop, pain, phone + pistol and peace. Now we deal with Parting. As an experienced observing participant, parting offers a re-entry atmosphere of connection, exhaustion, awkwardness, ambivalence, busyness, reminiscence, and loneliness. I’m hoping next week to focus on a different  topic in my post. Thanks to those of you who have shared this journey with us and commented. Living and parting go together. Oh, ma.

The end – not alone

By | Caregiver, Clinician, Consumer, ePatient, Family man | 8 Comments
Journey’s end – team effort – for ender, family and family caregivers. This post is for the family caregivers, caring for the ender, the family and each other. A raw and primal passage for the whole team. The ender in the eye of the storm with spiraling waves buffeting family and  caregivers, seeding their own spirals. Mom died well. As a holocaust survivor she was determined to control her demise like she couldn’t control her teen years in hiding . She was selfish and fearful, imperiously choreographing her demise.  She had childlike grace, aching love, and overflowing appreciation.  My mom found humor in the six P’s of dying: pillow, pills, piss, poop, pain and phone. Comfort, basic body functions, medication, and communication.   P for phone was her last joke. We can add a seventh: P is for peace. But wait, this post is about the caregivers. Those of us who tolerated her and marveled at her while caring for her and each other. She could not have staged this pageant without the caregivers who loved her because of and in spite of her strengths and foibles. They were present, put upon, testing their own limits, letting their love, skill, kindness, and generosity wash in as her life evaporated out. Especially, Loretta, a midwife for the end of life. Mom had many regrets in her life, some small and some whoppers. She did not regret the community she nurtured and watered all around her. That community came through. I felt appreciated and supported by her community as they folded me in. I was listened to, bolstered, and loved. Everyone brought their best self for her. Phew. No one was alone.  My mom was about not being alone. I thank that community with all my heart and soul for pulling that off for her.  Oh ma, you did good – we all did good.

Last days – a bittersweet journey

By | Caregiver, Clinician, ePatient, Family man | 11 Comments

She’s walking on a people mover. You know, the moving sidewalk in an airport. My mom finds herself going from blue to the sunlight. A few days ago she was alone, yesterday she saw her Opa, her father, and a beloved minister, who died decades ago, on the people mover. Wonder when or if she’ll see her husbands. She says she’s been forgiven for her worst transgression. Thank you, Lord. Today she speaks about furling. Furling?! Like a flag, I ask? Yes. Who will I be given to after I’m furled. She doesn’t want me to hurt. From you dying, I ask?  No, that’s life. You can handle life.  Then she drifts off. Her phrases have gaps of 30-90 seconds. She usually picks up where she left off. This takes listening to a new dimension. She doesn’t ask. how will I know that I’ve died? anymore. Her eyes are always closed. She’s gaunt. Her brow is smooth. Breathing regular. I’ve known this woman all my life. Oh, ma.

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.