[Updated Jan. 16, 2012, after Dad’s passing.]
As a caregiver, you always carry the feeling that you are dodging disaster on a daily basis. And then, something actually does happen and you find yourself careening from one thing to the next. That’s how the past month has gone for Dad: first, unusual and extreme shortness of breath; then, a muscle pull that had him almost non-ambulatory; and, this week, a sudden inability to urinate at all, which sent Dad to the ER to have his bladder drained twice in one week.
It’s a panicky time for caregivers. Although I pride myself on trying to handle things, I know I can’t fix all the problems, or keep Dad safe, or keep myself well without asking for help. Sometimes the “ask” is as small as asking a neighbor to make a Target run for a fresh pair of sweat pants. Other times, the ask is pretty big. In December, I initially reflected on my incredible fortune in having built a “Team Henry” to shore both of us up. Today, four days after his passing, I wanted to update it to make sure I would never forget all of the wonderful people who helped Dad and me along the way.
1. Dr. Michael Flaningam, Sutter Internal Medicine – Dr. F agreed to see Dad even before he lived here, when he came for long visits. And since Dad moved here in 2006, he has proven to make savvy adjustments in Dad’s medications (balancing stroke and cardiac conditions), carefully considering the risk-vs-reward of treatments in keeping with Dad’s wishes. I also appreciate his caring interest in Dad; his inquiry about Dad’s WWII experience on the anniversary of D-Day led to my first post on The Henry Chronicles. He’s called me back when I needed him to, and been a real Trojan at responding to my emails. I’d be embarrassed to admit how many emails I’ve sent him through Sutter’s secure email system (like the rather desperate message ending, I am frantic about the idea of doing this watch for 5 more days. I’m a rock, but not THAT much of a rock. He religiously responded, and was always helpful. Monday evening, as I shared my last dinner with my brothers before they went their separate ways, he called to offer his condolences, as well as compliments for the care we have provided to Dad.
2. Angela, Dr. Flaningam’s medical assistant – You can’t leave messages on Sutter Internal Medicine’s voice mail anymore, but while you could, Angela was Dr. F’s stalwart ears. She always tracked him down and called back.
3. Amber Kwiatkowsky, Dad’s nurse with Sutter’s AIM program – In June, my Dad was referred to Sutter’s Advanced Illness Management (AIM). It took me a while to understand how it worked, but eventually I got it. And Amber, the nurse that oversees Dad’s care telephonically, is why. Amber was my “go to” person for problems I didn’t know how to solve, and she always had great practical ideas, as did her colleagues – the nurses who visit in the home when Amber recommends it. Their goal was my goal: let’s keep Dad out of the hospital and as comfortable as possible. As long as I’m confessing, let me admit that I placed 10 calls to Amber during the difficult week prior to Dad’s hospice admission. I didn’t call the pediatrician that much when my daughter Maddie was a newborn.
4. Pamela, Debra, Dee, Maria, Jo Jo, Mai, Hayat, Lina and all of Dad’s caregivers at his assisted living community. As Dad has become more emotionally dependent, a host of people have stepped up when Dad is at his apartment. I don’t know their names but I am especially fond of the staff in the dining room; as soon as they see Dad seated, they immediately say, “I’ll get your glass of milk.” That more than anything else reassures Dad that these people know him and are looking out for him. One of the team even brought Dad a lemon tart she’d made at home. (Future hint: Dad’s a chocolate guy but I’m sure he appreciated the thought!)
5. Adam Batten, “Dad walker” – Dad’s quality of life hinged largely on his ability to take a daily walk outside. When I was out of town, Adam came by for 45 minutes before Dad’s lunch to help him exercise safely. Adam teaches an exercise class at an independent living community, and he’s 6’5″, so I figured he could handle my 200 lb. Dad!
6. Chi, Dad’s pedicure champion at Eastern Nails – It’s toenails like Dad’s that led to the expression, “tougher than toenails.” Not only is Chi up to the task but she provides service with tender care.
7. Abigail Kane-Berghash of American River Therapeutic Massage – Dad’s back was extremely sore following a muscle pull. Abigail brought her portable massage table and gently eased his very tight muscles. After Dad was admitted into hospice, we made massage a weekly date. Dad loved it when Abigail massaged not only his back, but his hands and feet. Massage is about more than mechanics, and Abigail knows it. It’s about healing, and honoring the person. Afterwards, he looked not only more relaxed, but happy.
8. My brothers, Scott, Bruce and Dean – I am not an unsupported daughter-caregiver. When I needed my brothers for respite, vacation coverage or just personal support, they came. They also called to say, “How are you holding up?”
9. My husband, Todd, daughter Maddie and son Thom – My immediate family really tops the list of Team Henry but I’m not going to re-order this list! I wrote about Todd “the unsung hero” and our “opposites attract” 30-year marriage in August. Maddie was living at home until October and always went out of her way to converse with Dad, which isn’t easy given his 90%+ hearing loss. One night, when I was especially tired, she told me to go take a break and rest while she watched Dad. (And she went right to work tidying up the kitchen!) It was Maddie’s brainstorm to read Dad’s favorite Shakespeare passages to him just hours before he died, which gave me the idea to read Sonnet 130 as he took his last breaths. And Thom holds “Papa” in a special place in his heart, and vice versa. Something as simple as asking Dad, “How are you, Papa?” — and really meaning it — went a long way. Thom’s medium is music, and he composed one of my favorite pieces of his, “96 Years.” I just wish my Dad’s hearing was good enough to understand it.
10. Cousin Louise Ulbricht and her daughter, Mary, the only relatives from Dad’s side of the family that keep in touch, always responded when I told them Dad was lonely and asked them to send him an email via his “Presto” automated email printer. Their loving notes and sweet thoughts were so welcomed.
11. My girlfriends – These are the friends that kept me sane by calling, texting, sending funny cards – and in the case of Collette Johnson Schulke, standing by for a weekly “caregivers’ social club” over wine at my house. Lisa Steele, Tracy Campbell, “Berrendo Babes” (fellow exercisers Kylee Wosnuk, Doreen Mahoney, Erin Celli, Rhonda Heath, Sarah Clutter and Jenny Bittner), Ellen Palmer Carleson and her siblings, Nancy Moffett, Cheryl Tyler Clark, Debbie Hoppe, Tamalon Littlefield and Wendi Taylor Nations… you rock my world. Nancy Moffett, from afar in Tacoma, WA, was a constant source of humor and support.
12. My in-laws – You hear people complain about them? I don’t. My mother and father-in-law Ray and Mary Lou Stone are wonderfully caring, always sympathetic, always trying to make my Dad feel at home despite his hearing challenges. Same goes for my sister-in-law Mary Wemer and her husband, Ken, and my brother-in-law Mike and his wife M’lisse.
13. Dave Delehant, estate attorney – I know Dave didn’t charge the full freight when he helped rework Dad’s will to conform to California laws. Sure, he did the work and did it well, but I especially appreciated his patience with Dad as he explained things over and over. Giving freely of his time was a little thing, but it helped.
14. Sutter Home Health – After being referred by the AIM program for Sutter Care at Home, we had a whole flurry of incredibly helpful visitors. Home nurses included the stylish and delightful Sondra (who knows a thing or two about accessorizing on top of nursing), Angie and smart and in-charge Marie Boyer, the nurse who specializes in the acute stage of advanced illnesses. Rhonda, the physical therapist, came up with a host of ideas about how to minimize strain on Dad’s back. Simple stuff but I hadn’t thought of it, like using the electric lift in his chair all the time, use the wheelchair instead of a kitchen chair at the table because it has arms, etc. And “Jan the Bath Lady.” It doesn’t get any more personal than bathing someone, and it takes a very special soul to make it feel like a day at the spa rather than an intrusion. I’m telling you, this woman made a huge difference to Dad and to me.
15. Karen Rhodes, my lovely housekeeper – I’ve been fortunate to have Karen’s services for seven or eight years. She has always greeted my Dad cheerily, and she makes him feel special. When I was facing a gap in my caregivers’ schedule, Karen stepped up and changed her schedule to be here to help me, and visited with Dad one evening so that I could take a break with my husband, Todd. When Dad died, Karen cried along with the rest of us.
16. Jim Jennings, my go-to spiritual and emotional counselor – Jim, where do I even begin about Jim? I met Jim when he was the co-director of the US health care practice of Hill & Knowlton where he was liberally consulted for guidance. During my mother’s terminal illness, it was Jim I wrote in the middle of the night when I was tired or in emotional pain. He was alway there for me, returning my written vomitus with a human and helpful response, Since retiring moving to Hawaii with his partner, Dudley, he has become a volunteer and now chaplain with Kauai’s hospice program. He is the guardian angel who encouraged me to identify the five top things I would do to take care of myself as caretaker, which I wrote about in this post. He’s also the “beloved mentor” I turned to when trying to figure out whether I could or should move Dad to my house – which I also wrote about in a post. In the last weeks, he was a constant source of support and advice about the final stage in Dad’s long life journey.
17. Visiting Angels – My caregivers were an integral part of Team Henry. Erin Fraker found a great caregiver, Keyanna Hicks, to watch Dad through the night on six hours’ notice when I realized that Dad’s catheter bag would need to be changed during the night. As Dad’s needs rapidly changed, she constantly adjusted the team, eventually providing support for 17.5 hours a day given the rapid decline in Dad’s leg strength. Keyanna Hicks was a lifesaver and Natalie Posey did a wonderful job on night duty during Dad’s difficult last few days. Though not with Erin’s organization, Tonia Johnson certainly deserves the moniker of “angel”; she was referred by a family friend and joined us Dad’s final week. The coq au vin that she lovingly made on Wednesday turned out to be Dad’s last real meal – and he ate and enjoyed every bite.
18. Sutter VNA & Hospice – A few lifetimes ago (or so it feels) I became aware of the value of hospice when, as a newbie marketer, I worked for Sutter Memorial and had a chance to be introduced to the concept just as it was gaining ground in the United States. Michael Tscheu, a social worker, explained how this coordinated style of care could provide better quality of care and quality of life for those that didn’t have life stretching ahead of them. Then in 1999, I came to know hospice much more personally as a member of my mother’s hospice caregiver team, after she was diagnosed with late stage lung cancer in Tacoma, WA. Hospice was not as accepted among the medical brethren as it is now; the physician directing her care in the hospital in Tacoma tried to tell me that “it would be kinder for all parties concerned if she just winked out in the hospital.” Convenient for whom? Him? She did come home with hospice and lived a surprising 3 months. And now it’s Dad’s turn. We weren’t sure he would qualify — which I worried about in this post — but I sure knew we needed it. And yesterday we were approved for hospice. Since then, I have met Vina, who does “intake,” Mary the nurse, who evaluates patients for their appropriateness, GC Low, RN, who responded to my telephone inquiry about morphine dosing by visiting. GC spent an hour trying to help me get Dad’s shortness of breath under control. It was GC who responded to our urgent call on Saturday morning, Jan. 12, when she confirmed that Dad was actively dying; she then gave us a very specific dosing regimen for comfort medications to help ease Dad’s passing (which we, overwhelmed, had to have her repeat three times). Over Dad’s 22 days on service, we also received visits from nurses Tony and Barbara, and lots of helpful phone advice from Tracy, a supervisor in the office. In December, Tracy spent a half hour explaining to me how best to transfer Dad after he stopped being able to stand. Dennis Armstrong, the social worker with an amiable, wise soul, visited in the first 24 hours after we were admitted into the hospice program, followed later by Brooke Zakar. We also are grateful for Diana Skinner, RN, our care coordinator, and delightful Rebecca, Dad’s bathing assistant. In Dad’s last week, we also took advantage of the services of Dale Swan, hospice chaplain. Although my Dad teased Dale and said he wasn’t sure he trusted “a church man” (maybe teasing, maybe not), Dale was an important resource to me in what turned out to be Dad’s last two days.
19. The “Hair Care” Ladies – For at least five years, Dad has gotten his hair cut (along with other extraneous hairs) at a little quick cut place at 5150 Fair Oaks Blvd. They have always been sweet to Dad and supportive of me. So much so that one of them, Hang, one of the ladies, even came to the house to tidy Dad up. Helping him keep his own standards was a small way of demonstrating love for him, one made easier with nice people like Hang and the other women who work there.
20. James Coyle, DDS, and all of the wonderful people who work there – I was sad when I called to let them know Dad wouldn’t be returning for his six month checkup. They’ve not only kept him healthy, but been part of the broad network of people who have praised his longevity, and well, just his essential “Henry-ness.”
21. My cousin, Lynn Whiting and her husband, Henry — My cousin, who lives in Bliss, ID, has built a life out of art, poetry and prayer. It just flows out of her spirit naturally, and she shared it with me as things became more difficult for Dad. I referred to her as “the angel on my shoulder” in this post. And I’m about to post the beautiful email and photo she shared with me on the day of Dad’s death.
22. Jennifer Johnson, all-around friend and helper — It seems like every industry has a word for someone who is versatile and helpful. Baseball calls someone like this “a utility player”; in medieval times, someone who was competent with many skills was called a “jack of all trades” (the “master of none” came later and certainly doesn’t apply to Jen!). Jennifer, my friend Collette’s granddaughter, would house sit, walk with my Dad, visit with him, or, when I was out of town, take him Sunday meals at his assisted living community. She didn’t just do it – she got a kick out of my Dad. She’d relay stories to me, such as the time they were walking on the American River Parkway and he’d have little commentaries about the people passing by: “Nice hat. Too bad she must have sat on it.” By letting me know that Dad was okay, she helped me to care for him and keep him comfortable.
23. Kylee Neff, personal trainer – In October, I wrote about my list of the top five things I pledged to do to take care of myself as a caregiver. Featured first was working out with my neighbors under the encouraging tutelage of Kylee Neff. I have often said that I lived with future; I saw how important balance was to overall health and wellbeing when you get as old as my Dad was. I started working out with Kylee not long after I turned 50. Training with Kylee was good for every part of me, but above all, she has been a friend. Kylee had a terrible series of things happen to her in November and December but she still managed to be a source of support and inspiration for me. Her little boy, Will, couldn’t have a better mother.
Team Henry, I am so very, very grateful for your part in this story.