The Mindful Caregiver

Mindfulness in Care

10/1 .Volusia County Public Library I have some books to return and some to renew, so I announce that I am going to the library. Elaine asks if I will print the papers for her leave from work. I head for the computer lab, and I spot a shelf of books for caretakers on the way. Later I return to it, where I find The Mindful Caregiver.  It's written by a geriatric social worker who was also.primary caregiver for her mother. It looks like solid advice, not the feel-good drivel in some of the other titles. I add it to my stack .

10/2 .Honest .I told Elaine about The Mindful Caregiver, and I looked over the list of caring qualities in the book which  I copied onto little slips of paper. I chose honest, and I told her to ask me anything. We discussed how I felt after her announcement that she was leaving work. I saw this as giving up, without even giving the new routine a chance to work .I felt betrayed, uncertain how this arrangement would affect my ability to live here and cope. I was gutted, unable to get past my grief and sadness .Ron was out, so we couldn't talk. I couldn't tell Elaine my concerns initially, because she was so relieved and happy about her choice .So much is out of her control .I couldn't take this one thing away....

I texted with a couple of people .They backed Elaine's choice.  I did, too, on some levels.  I cried, a lot. I secluded myself in the bedroom, but I eventually had enough of that and came back into the world. That's when we had the honest talk .We also talked about boundaries we need to keep so that we can adjust to the new dynamic

10/3 .Aware. I brought the jar with the care qualities out and showed Elaine some ideas for today's focus .She chose aware .She had said that she feels our current situation is unconventional, not a child caring for an elderly parent or one spouse caring for another. Most of the cases require an acknowledgement that the condition will get worse also .None of these apply here, as Elaine will recover completely as long as she is able to complete the treatment.  She will need limited assistance at some times, and I need to back off when she is able to do it herself .She's been so sick that I have done everything .It's not necessarily the best course, long term.

I was also trying to be more aware on our trip to Daytona to see the PA .She says there is definitely no cancer in the home marrow!  Great news, but actually what I expected. Also hemoglobin level and other numbers are good .Thank God .I was more aware of our surroundings as we stepped out of the house, a rare event in our world. We took an alternate route, noting changes along the way.  The waiting room was blessedly empty, except for one poor woman who couldn't get anyone to explain why she was still waiting .I stood while Elaine had vitals checked and got bloodwork .Aware of the painted rocks on the CMA's desks, I asked and discovered that patients had painted them for the staff .Each was lovely and unique .

We drove through Pollo Tropical on the way home. That is a treat, as we don't have one nearby .Aware now that my leftovers await, I am going to warm some up!


10/4 Proactive.  We're preparing for my departure early tomorrow .  There are many things to be done .We messaged those who are coming to check on Elaine during my absence .I checked into my flight and discussed pickup with my husband .I am doing laundry, especially bedding since overnight guests will be in my room .I did a little yard work and made soup out of the refrigerator contents  I will be cleaning the floors.

I have finished all the parts of The Mindful Caregiver that apply to my situation .The parts about being proactive deal mainly with placing the patient in home or residential care .Not going to happen here .So I searched for resources and found good places online which deal more specifically with parents of young adults who have cancer .I never really considered that many would be married and have spouses who wanted to keep their matters private, even from the patient 's parent .Not happening here either, but we can benefit from considering how we divide the aspects of care .I made a screenshot of the Caregiver 's Bill of Rights for future reference .Yes, all of this is proactive .

10/5 .Adaptable.  Damn .I lost my post. Forgot to hit Update .Here's my best recollection .

I got up early to fly home. I was on the plane when I realized that I forgot my earbuds .What a drag .Then they announced a maintenance delay. Fortunately I was adaptable, and the issue was resolved in a few minutes .Meanwhile, Elaine 's first respite carer woke to a violently ill toddler. Elaine found someone else to come by, and it's good that she was adaptable because they didn't arrive until about 6 PM

My house was a wreck after my six week absence. Considering that I left in less than an hour when we found out that Elaine was being admitted to the hospital, so there was much to do .I tackled the most important areas, voicemail and bills, kitchen cleaning, and getting my mammogram plus Ron's prescription .It was necessary to be adaptable so that we could leave sooner if things weren't going well with Elaine .

10/6  Grateful .  This was a tall order .We had some pretty deep discussions as we waited for time to go to Charleston to see the kids .Just as we were preparing to leave, Dan called. The baby was sick, so they were taking her to the doctor .Okay, so we're not coming .We can't risk infecting Elaine through either of us .Ron was bitterly disappointed. So, what's to be grateful for?  Chris came by, all excited about the duck he killed  He stayed for a sandwich and watched the first half of the game with Ron. I am so grateful for him .

I am also grateful to have had the chance to clean that filthy pickup for us to travel in .I got a lot of things ready to take to Florida, which could be extra good since baby's fever seems to have broken .We will decide after her follow up visit whether to go down after all. I am grateful that she wasn't as sick as they feared .

Elaine has had a couple of visitors tonight, even two overnight guests. She's grateful for the distraction and the food they bring.


10/7 Collaborative .I am a slow learner .Not only am I 2 days late, but I have written an entry for this already, which I didn't post and lost.

We waited until Aspen has seen the doctor and been over 24 hours with no fever, and then we went .Janet came before we left, with 2 bags for us to take to Florida. We met Chris and picked up a gift for the baby, so we were collaborative.

The baby was fussy, so keeping her quiet was definitely a collaboration between GG and myself .Ron was dizzy, so he couldn't help it he wanted to. Daniel told us the collaborative nature of his new job as Staff Scientist. Ron and I collaborated on all the driving, since we had a lot more which would be done the next day.

Angel collaborated with Elaine on doing some household tasks before they left . She tried to collaborate with Sherri about clothes, but she got too tired.

Collaboration could go better, in sum .

10/8  Patient .  We were up early and on the road by 7:30 in the morning, and we talked to Elaine. She was tired after all the visitors, and we talked about what she was going to eat .

We drove as quickly as was safe, we never stopped to eat, and we got in around 9. It was an uneventful trip, the best you can expect. We were patient, and Elaine was too, although she may have slept more than she should have.

10/9. Gentle. Elaine was pretty insistent that we focus on a gentle return to life in Deltona before tomorrow 's second chemo treatment. She asked for special food and ate more than usual. I don't think my day was so gentle, since I had to deal with things which happened during my absence, unload a truckload of stuff and do some cleaning too.

I was a bit gentle on myself by picking up a rotisserie chicken instead of cooking .I got some special ice cream too. By 8, we are gently fading into bedtime...

10/10    Humble.  We had to change our day, so we changed from Dedicated to Humble.  It was humbling to find out that our well-planned day changed because of too few white cells. Boom!  Like that!

I spent some time reading about humility. It can be a bad thing, like when one person humbles another to prove superiority. One whole line of thought is that pride, humility 's opposite, is the result of original sin and leads to all sorts of bad behavior. So humility is the best?

I  am humbled by the futility of trying to think we've got this when the cancer is so clearly in charge. Then you have the system, the insurance, the employer, the hospital and the units within it....It's overwhelming!

10/11. Productive.  Elaine was determined to get progress today, since it's not a post-chemo day as expected. The big event was getting a new drivers license. ✔

I can lapse into times where I am not productive, but I consider companionship as a form of productive activity in times like these. I did venture out, taking Ron to the library and adjacent nature center. We did a little business and a little browsing.

I have also done a little cooking, and it's trash day.  I still have laundry to put away, and I need to wash the truck. Oh, and we need to video chat with GG and the baby!

10/12  Responsible. Elaine kept with the "getting on with it" theme, and she started by unloading and reloading the dishwasher. It's the first housework she has done, outside of her bedroom.

She also got her Pap smear, something she had neglected for years. She really likes Dr. Gabriella, so I sent her in by herself.  That's a responsibility thing too.

We planned an outing, Elaine 's first since the diagnosis, to the movies .Ron wasn't up to the 1:45 show, so we rested and went at 4:45. We enjoyed the movie, and Elaine did well, even drove us there and back. More responsibility.

11/13  Insightful.  Elaine liked this, and I agreed that she is getting more able to consider things rather than just reacting from a position of illness.  Then she has spent most of the day sapped of her reason by a nasty headache. I sought insight in between tasks today, but I didn't gain much insight about our current situation, except that you can't ever assume much of anything about this situation. Her condition will be what it will be. We just need to observe and be ready when we're needed.

11/14  Respectful. We are choosing to respect, rather than to fight the cancer and its treatment. When we try to force an agenda, it falls apart. We must observe the current conditions and react accordingly. It's even got a football analogy as we watch ESPN with Ron. It's like calling an audible.

We rode with our respectful attitude and got the office cleaned while Elaine fought the miserable headache. It was a pretty good day .Ron watched football, and I read chick lit.

11/15 Hopeful.  We are hopeful about Ali's visit. She's staying for 5 days. It's going to be a chance for Ron and me to go to the beach, etc. Elaine can visit with an old friend. Oh, and there's chemo right in the middle. At least, we hope it's a go this time.

right now Ron is trying out the inflatable kayak. Hoping THAT'S going well too.😁

11/16  Considerate. We have 4 people, 4 dogs, and a cat under our roof. Being  considerate will be critical. Different sleep and eating habits, different intersts, and one of us with the effects of a life-threatening condition.

It has been a successful day. We went to the beach.  Elaine had a good time and ate a whole hoagie!  She's been more subdued since, but, then, we all napped!  And we managed the dogs. So far we are getting along. Considerate was a good choice.

11/17 Adaptable. We had a different mindset after the no chemo week last time. We were prepared for that possibility that could happen again. With only one chemo, we had to be ready for reactions we hadn't already seen.

Since Ali was here, we had coverage and could get away for a couple of days. We just to wait and see.

Elaine had great lab numbers and chemo went well. I quickly packed and we headed out. Adaptable was good.

Ron and I had a lovely dinner. Elaine and Ali did what they liked.

11/18 Unique. It was, starting at 5 a.m.with a horrible argument that led to a closer understanding of each of our positions in this new reality. I didn't contact anyone, and we only left the condo to eat, swim and walk on the beach. It was unlike any day since Elaine got sick.

11/19 Warm.  I started with a sunrise beach walk. It was warm, with no sea breeze as the front moved in. We hung around for a while before going to visit family with a toddler.  It was great fun, but Ron developed vertigo, while his medicine was back at the condo. That escalated, and he ended up sleeping away the afternoon. I cleaned and packed, grabbed lunch, and decided to go the point myself. It was raining lightly, but I didn't mind. Then it poured, and I was trapped .I didn't want to swim in a downpour, and I didn't want to walk back in one either. It finally slacked off, and I started back. I tucked my phone in the strap of my swimsuit so I could open the gate. On impulse, I touched the pool water with my foot. It was warm, and it felt good. I WILL go swimming after all! I put my stuff on the table and walked in. I swam for several minutes before I spotted the phone on the bottom of the pool. It was VERY warm! Not good.

11/20 Generous. We were interactive today, both with our guest and with our old friend, Ann, and her roommate. I also had a generous (?) deal from Sprint which resulted in lower monthly bills to counteract the cost of my new phone.

Ron was *AHEM* particularly generous in his contributions to the tone of the day. 😉 Ann was generous with food and drink. Ron joined in generously in the game playing.

11/21 Strong. Ali is gone, and the long haul begins.  This isn't going to be about the crises, hopefully, but about trying to get enjoyment during a time with so many challenges. It's about patience and perseverance. You have to be strong to do all the other things that make life worthwhile, even in the face of setbacks and suffering.

11/22 Observant.  Both Elaine and I were down this morning. Digestive issues. It was hard to relate to most of the terms. We considered hopeful, as a repeat, but observant was less commitment. We were open to the possibility that things would improve, and we were content to sit back and relax until we observed improvement. We watched a movie while we waited, then a show Elaine likes. By evening, we felt like ordering pizza.

11/23 Bold. We decided to step out on Ron's last day here for a couple of weeks. Elaine had gone to the dentist for her broken tooth, and she found that she needs a root canal. Ron dreads the long trip and the lonely house. I know that our time in Cancerland has only just begun. We face week after week of treatment and the effects of both of and the cancer. Elaine will be hurting, and I will be a part of the whole experience.

Bold took us away from the everyday worries. We made stops at a few places with lovely water views and saw manatees feeding right offshore. We drove the wildlife tour to see lots of wading birds and ducks, along with lots of alligators. We ate at Dixie Crossroads. Elaine was tired, but it was a good day.

11/24 Fearless. Ron left, driving over 900 miles in one day by himself. I took the dogs to Palm Bluff. We went to the hospital for bloodwork. Afterwards we ate at Cheddars. m

I worked on laundry. We watched Dreamgirls and played games. Well, it wasn't scary, but it was what it was.

10/25 Resilient. I am not. We chose the word after I went to Wal-Mart for an oil change. It will be 3 hours, she says. I ask if there's a better time. No guarantees, she says, but noon is sometimes better. I am thinking, okay, I will go home and try again later. I call at 11....still 3 hours. Okay, I will find somewhere else. I do, I make a 4 PM appointment.

While waiting for appointment, I start cleaning. I ask Elaine about a friend, and her reply sets me off on a trail that leads to an unfortunate Facebook post. I write that people who say they care about the seriously ill should demonstrate it. I use caps to emphasize my dissatisfaction with those who live nearby but never visit. I am specifically thinking of the friend I asked about of course. But the truth is that none of those who came rushing to the hospital have visited in the 2 months since. Elaine defends the friend, saying she was there when we really needed her. No. She was there for the drama, but none of her friends have proven to be there when she needs them. Zero.

We go for CT scan, we get handicapped placard, we even pick up prescription. No big deal, but I am tired. Lyme disease tired. I lay in bed until time to go. Drive to garage. Guy comes in and says he's alone. Got to finish Mustang, and he will be right with me. I wait.  Guy with Mustang, his wife, and manager's wife with 3 kids come in. There aren't enough seats. Guy is super chatty. Elicits life story from manager 's wife.  Not pretty. Finally guy pays for Mustang and leaves. It's been an hour. Manager says my oil is draining. Okay.

Phone rings.  That never happens. It's Ron, wanting to know do I want good news or bad?  Good is fish he caught. Bad is tree has fallen on roof.  Wow!  Pretty bad, right? Manager comes in. I tell Ron that I need to pay.  He's all confused, even though I started conversation by saying I was at oil change place. Finally convince him to hang up.  Go to counter, phone rings again. Elaine, of course. Tell her I'm checking out. She says call when you're done. I wait and wait, but manager wants to dissect Deltona. I am interested, but I am worried about Elaine. It's 5:30 when I get out of there. Hour and a half in unpleasant circumstances waiting when I made an appointment!

Drive to intersection and call Elaine. Wait!  Not where I thought I was!  Turn around twice, because I can't find the bank. Discover that Elaine is craving specific bakery item at Publix. Still lost, but now heading in right direction, I try to find bank on map.  New phone won't display map. I give up and go home. No food, no bank, just storm in and inform Elaine that I am done. Ask her to call Ron. My fondest hope is that I will not be forced to interact with humans (or dogs) for the remainder of this day.

I have spent some time alone now. Elaine went out, came back and alerted me that she had made pasta. Okay, I said. I am still not ready for humans.

I had been reading about resilience. Checked a couple of dictionary definitions which focus on materials which aren't  easily damaged. I switched to Psychology Today. They focus on the characteristics of resilient people. A special emphasis is placed on people who grew up in dysfunctional families. They feel that some children are resilient in that they find others who meet their needs. They know that they can talk about their  problems  with people who care. They are introspective, but they also know where to go for support. They also have faith and hope. They care about others, but they also believe in themselves. They have good self-esteem.

I deleted the Facebook post. I won't check it again tonight, and I feel that I should spend even less time there. I detect a need for attention that isn't good for me. My post elicited guilt from unintended readers, and, of course, I knew that the ones I would like to change their behavior won't, and there's not a damn thing that I can do about that. I feel very alone, and I guess I projected that into Elaine. I wouldn't ask for help for myself, but the Mom in me could do that for Elaine.

So maybe I do have resilience most days. Today was not a good day for me. I can honor my feelings, respect that I don't always have to be strong, and then move on. That's resilience too.

 10/26 Heartful. I went to a hair appointment, so we chose this word later in the day. When we chose it, I was thinking more about being responsive to Elaine 's heart, but it ended up being more indulgent than I intended. That's not said in criticism, it evolved naturally and it was all good. We did whatever our hearts desired. We take our pleasures where we can in Cancerland.

10/27 Attentive. We have spent this Saturday much as people outside Cancerland do. We have done outside chores and a cookout. We are responding attentively to the changing weather (it's not hot!) and the needs of our home.

10/28 Willing. I was willing to do whatever Elaine wanted. We took a scenic boat ride. We went to eat at the place she chose. We played games and watched tv. Very laid back afternoon followed a busy morning.

10/29 Joyful. Janet is here, so we chose joy. We're enjoying our night together before she goes to her condo. She's coming back before returning home.

10/30 Cooperative. Janet paid for our breakfast before I drove her to her condo. Elaine was planning to come along, but she didn't feel up to it. Janet and I enjoyed her pool before I drive back.

10/31 Supportive. Another disappointing day as Elaine's neutrophils were too low for treatment. We were shocked. It seems that her body isn't processing the drugs as quickly as we hoped.  Ttreatment is delayed another week. So is her root canal. It's tough, but we get great messages of support from friends and family.

11/1 Efficient  It's Elaine's #1 shopping day of the year!  Halloween clearance sales! We shipped 3 stores, had a nice lunch, and she dressed the dogs and herself up for photos. I also did laundry and visited the library.

11/2 Kind. Elaine is dragging today. She's tired, so she's being kind to her body. I kindly assembled all of the cards she has gotten into one display. People are so kind to send us their best wis. So many of the cards are right on the nose too!  I'm especially find of the ones which talk about good and bad days, not always feeling strong, and the one about trea. There are 25 store bought cards, with only two the same.

11/3 Faithful. We didn't go anywhere or do anything. There was quite a storm in the afternoon, so we sat outside on the patio to observe.  There was a mighty  power in it. It was the night to make the clocks fall back, so I have spent a lot of days observing morning and evening times, which will be changing. It was just another day in the progression, as we wait for treatment again, we hope, in Wednesday. We have to keep the faith, even when it's boring.

11/4 Unflappable. We have rejected this one several times.  Definitely felt flappable.. able to be let down  by the results of this awful disease. The delays in starting treatment, the stage III, the ER visit, the weeks with no treatment due to bloodwork, the headache, motion sickness, and on and on. But today, Elaine says it's time to go with whatever cancer or its treatment brings us. I have a little bug, and I am trying not to let that get me either. I even went to church, which I haven't done in many weeks.

The Cancerland game is taking shape. At Elaine's  insistence, cancer will be the captain of a ship we travel on. Treatment is the river. I insisted on a dark forest before players get to.the ship. That represents the time before diagnosis. The goal, of course is remission. There will be many twists and turns, of course. Now that the get well care display is done, I can begin the physical construction of the game.


11/5 THIS IS WHERE WE TOOK A BREAK FROM THE WORDS.
We went to the movies to see Christopher Robin at my request. It was cute. We went shopping after, snagging several good buys but ultimately overdoing Elaine's stamina. That was an emotional setback, as well as a physical one. Once We were home, Elaine recovered pretty quickly.

11/6 We thought we might go after Janet today, but her friend came over. It was Election Day, and I stood in line with her to vote until she went in. Then I hung out with the mayor and her opponent and their spouses until she was done.  That was interesting! That was quite a trial, and Elaine pretty much spent the day recovering while I tackled yard work.

11/7 CHEMO #3 IS DONE!  My dad died on the day of his scheduled #3. We had an appointment for 7:30, but we waited until 10 until we knew it was really happening. By then, I was overwrought. I just couldn't get comfortable until I knew it was happening. I cried in the treatment room and again at home when it was over. I couldn't eat. I was bitchy with people. Not a good day.

Janet and Lynn came in the evening. We had a nice visit. We looked at a lot of our pictures from the cloud.

11/8 We made a Publix run so Elaine could gather provisions for the time I am gone. I leave early Saturday morning. I will return on Wednesday, and we able to schedule her appointment for Thursday.

We may overdone it when we took a scenic drive into Orange County after lunch. It's happening more, as she explores  the limitations of her condition.  It's fluid and changing. I am thinking that she isn't trying hard enough of she doesn't  occasionally   cross that line.