A Caregiver Is….

Four years ago today, April 13, 2013, I began a journey that I never anticipated  that I would be on – the journey of caregiving.

My mother, then 88, was diagnosed with congestive heart failure and several other cardiac ailments following a medical test to confirm the congestive heart failure diagnosis.

What followed was an initial four month journey with mom which included,

…a two hour ambulance ride from one state to another to have a new heart valve replacement procedure that could not be done in the hospital where she began her medical journey and was recommended due to her fragile health and age

…a stint inserted in her aortic artery to open it up prior to a new aortic valve replacing her failing one,

…a week in a rehab center to recover from the stint procedure,

…a return to the hospital for the valve surgery followed by corrective surgery two days later to stich a nick in her left lung,

…followed by a 7 day stay in a cardiac critical care unit and her 89th birthday present being placed in a regular surg-med room

…then another 7 days of hospitalization

…before being transported two and one-half hours by private ambulance to a local (to me) rehab center where she spent two months

During that time I scrambled to make sure that her financial obligations were taken care of and that I had the legal power to take care of her affairs.

Since that time there has been an occasional ER visit and a couple of hospital stays and a 30 day rehab stay due to medication issues as well as a flare up of her congestive heart-failure…

…and a return of her breast cancer which was successfully dealt with and did not require any treatment

But overall, most of her days have been quiet ones with reading lots of books (she reads me under the table) and her vitals have remained good.

One of the ways that I have coped with my role as caregiver has been through social media, especially Twitter, with weekly “tweetchats” under the hashtag of #carechat. The people I have met there have been wonderful reminders that I am not alone on this important journey.

During one such “tweetchat” back in January, the discussion enabled me to reflect on some words that clarify my role as a caregiver to my mom:

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These are roles that I have used, and continue to use as a caregiver.

A pinch-hitter is a baseball player who bats for a teammate and it often occurs during key moments of a game.

When my mother was first hospitalized I was a pinch-hitter. I “went to bat for her” during a critical time in her life. I had to take charge of her finances, be her eyes and ears and, as it became clear during her initial medical journey, getting her into a post-recovery living space that would be what she needed. (And nothing like selling her mobile home (with her permission) and moving her to a new state and town after living for nearly 70 years in one area before she left rehab!)

Alongside being her ‘pinch-hitter’ I was also her ‘interpreter.’ I tried my best to explain to her what was happening and also explain to her medical teams what she wanted or needed. I think that I did a good job but like being a pinch-hitter, it was a demanding job.

Close to this role of interpreter was being a ‘navigator.’  Her situation was such that with the medication she was taking and the condition she was in, I had to help her navigate all of the questions and decisions. I quickly discovered that staying in touch with the medical social workers assigned to her was a key thing. I would often talk to them as much as the nurses assigned to mom’s care because they had answers to the “after she leaves the hospital” questions.

One situation stands out early in the journey in which all three roles merged together. It was a Friday night, one week after her admission to the hospital, and mom and I were waiting on the results of a significant test to determine the next steps. Finally the doctor came in and explained the results and that certain things would have to be done and that would require a move to another hospital.

Mom was hungry, as was I, and I also had a 3 hour drive back home. As the enormity of the situation dawned on me, I knew to make a decision then and there was not wise. So I ‘went to bat’ for mom as I repeated (interpreted) what the doctor had said (and in a louder voice, too so she could understand me) and then suggested that we talk in the morning after she had a night of rest and some food in her (navigation).  She agreed.

The next morning we talked by phone about what needed to happen next and thus set in motion that journey that we are still walking today.

So these three roles, pinch-hitter, interpreter, and navigator, are vital roles that are played by a caregiver and they have helped me journey with my mom these past four years.

If you, or someone you know, is a caregiver, the website caregiving.com has some excellent resources.

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A Valentine’s Day Prayer for Caregivers

Good and Gracious God

Be good and gracious to us this day…

I especially ask today Lord that you are good and gracious to caregivers… to those individuals, men, women, young adults, even teens, who have responsibility for the caring of someone whose health cannot allow them to care for themselves.

I think especially of spouses who are no longer recognized by the one they have loved for years, decades… grant them peace and grace today, especially today when romantic love is in focus and their romantic love is in the distant past.

I also ask for young caregivers who have to put further education, deeper relationships, and other personal plans on hold to care for younger siblings or parents or both because of the situation they are in. Grant them hope that they will come to believe that You know the whole story and that You will do, and are doing what is right.

For those who are in their final days, even hours or moments of caregiving because death is close by, grant them and their caree Your peace and love as they say “goodbye.”

And for families who are fractured because of conflict and caregivers are in the middle, grant them Your kindness so that this season of life is not a destroyer of the family but a healer of the wounds.

Amen

Reflections on My Caregiving Journey; Three Years In…

This week marks the third anniversary of my mother’s health care journey due to serious cardiac issues.

And it marks the third anniversary of the beginning of my journey as a caregiver.

I had the privilege to share the beginnings of that journey this week as well the importance and dynamics of caregiving  with a group of young adults.

As I prepared for the presentation, I turned to a great resource site called caregiving.com that is run by a wonderful caregiving mentor, Denise Brown.

She has lots of great resources and support and I value her six stages of caregiving that I shared with the group. (And the #carechat Twitterchat twice month on Sunday nights that she facilitates has been a very helpful place to go for me.)

As I developed the presentation, I turned to an important tool of that time

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When I opened this small note pad, the emotions of that time period, from mid-April to late July, came flooding back into my conscious thought. I felt the fast pace, the long hours of waiting, the uncertainty of the next moment, and the celebration I noted on one page

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But now, three years later I am definitely in stage four, The Pragmatic Caregiver Stage, knowing that five and six,  the Transitioning Caregiver Stage and the Godspeed Caregiver Stage (respectively), can come at any time.

Since that journey three years distant, she has had a recurrence of breast cancer which has been successfully dealt with; had to deal with the effects of medicine that once regulated has helped her deal with all of her cardiac “additions;” and has fought to keep going at now nearly 92.

She has been a strong willed person throughout her life (my late father found that out as he pursued her for well over a year before she finally said “yes” to marriage!) and that, along with as she says, “the Lord and Mary Kay” has kept her going.

It has kept me going, too.

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A Simple Holiday Stress Reliever for a Caregiver is… “No”

Part of my life for the past two and one half years has been that of caregiver to my mom, aged 91. Major cardiac issues required a four month hospitalization and rehab in two different states and a move from the area she called home for 70 years. I did not have to think twice about stepping up and stepping in to help mom get back on her feet and I have not regretted it.

In addition to my role as a caregiver, I am also a husband, a dad, and a pastor. So this time of year with the Advent/Christmas events and services that are part of the congregation I serve, the time pressure increases.

But this year, I decided to say…

NO

No to additional responsibilities and opportunities that come only this time of year.

No to embracing an attitude of “I have to do it all, no one will help me…” and allowing others to grow in their leadership and service skills

No to more caffeine (Still working on that one but I have cut back on my caffeine intake and it has made a difference)

But while saying ‘No’ is good for us, saying ‘Yes’ to other things is also important…

Things such as…

Taking, no wait,…. MAKING time for yourself Who said we have to run around this time of year like an animated Tasmanian Devil?

Simply sit down and rest. Get out your favorite tea, coffee, or hot chocolate drink and sit down and rest! Read a book! (Look for my post My Top 12 Reads of 2015 on this site and if one catches your attention, buy a copy and enjoy a good book!)

Meditate/pray Slow down the anxious thoughts and relax

Let your pet love on you. (Even when typing a blog post!)

Turn off the TV, step back from your social media stream for a bit, allow silence to be a friend

This time of year in my community, a small town of just under 10,000, our local high school puts on musical. Now while My wife and I are there because our youngest is in it I know that there are caregivers present at the performances. Our parks and recreation department does a wonderful Christmas Card Display that is lit up in the evenings. For a donation, you can see some great artwork from a diverse group of clubs, churches, child care facilities, school groups and community groups from the comfort (and warmth) of your vehicle.  Find something fun to go to.

Caregiving is hard at times but…

life does not have to be put on hold and saying ‘No’ is one way that we can say “Yes” to living giving and renewing events that will help us not just be better caregivers but better human beings!

Merry Christmas and Happy Holidays everyone!

My Caregiving Journey… Two Years Later

Two years ago this morning I was talking to a nurse in my hometown a 150 miles and three hours away about my mom who had just been admitted because of what turned out to be several serious cardiac issues that had to be addressed.

That was the beginning of a four month journey that I call Chapter 1 in my care giving journey.

In two different hospitals, two different rehab centers, in two different states; mom, in her late 80’s underwent two serious surgeries and a long rehab process.

Once she got out (and she walked out of the second rehab center, with a walker of course) her world had forever changed. The area she had called home for nearly seven decades, coming to in the midst of World War 2 and a day after graduating from High School in the south, was gone.

She had painfully, and slowly, traversed that 150 plus miles and 3 hours between us, in two ambulances, 0n a couple of OR tables, several hospital and rehab rooms and my car as I drove her to her new home five minutes from my house and family.

As I write these words, I again realize just how much she had to deal with in that time frame.

Chapter 2 began on that Thursday in July when we brought her home to her “condo” (as she calls it) and helped her begin to get acquainted with living in a new town and state and under a different set of health circumstances.

It was also a re-setting of our relationship as I had left for college almost 37 years earlier and lived in four different states during that time. We got re-acquainted as I was no longer the 18 year old and she was no longer the, uh… well…uh – well you get the idea.

But it was also time she was healing and falling and healing and falling until, nearly 18 months later, an ER doctor became an advocate for her and her meds were reduced and the falling stopped as mom was able to get her balance again. Trips to the ER were almost becoming routine.

Chapter 3 began with this end of the falling and the discovering of a small spot of cancer. She had had cancer nine years earlier, pre cardiac surgery and all of that, and she was nearly a decade younger, too! But it had been taken care of, successfully, without post operative treatment.

Surgery has come and gone with this newly discovered cancer and the surgeon is pleased and again, for which we are all grateful, no chemo or radiation is necessary. But now we add an oncologist to her growing medical team list.

This is perhaps now what I should call chapter 4 as I write these words. I don’t know.

But what I do know that I am grateful and thankful for the help and strength of my God in walking with all of us through the past two years; for the wisdom and support of my wife (soon to be one of 32 years!); the support of the congregation I serve; the support of family and friends; and the growing camaraderie of fellow care givers.

I hope that when the time comes, I will be able to offer further reflection on this journey of my life as well with the hope it is of help to others.

Caregiving is hard. But I am glad that I have been able to walk alongside a woman who definitely walked with me through childhood and adolescence…and into today as well.

(I shared some back in 2013 about the time she came out of her four month journey of several things that I found to be necessary as an only child caregiver. Click on this link to read it, http://wp.me/pfQ8z-2py  )

 

A Journey of Caring for a Parent: An Only Child’s Journey

“I don’t feel well.”

When my mom said these words to me earlier this year, I took note and a ‘yellow flag’ went up in my mind.

Not long after that statement, she quickly (and thankfully in many ways) began a journey, because of cardiac issues, through the medical system in two different hospitals in two different states that also included two stints at two different rehab centers..

It has been a journey that has changed her life – her body, her health, and her address – as well as my life, and that of my family as well, in the past fifteen weeks.

As she now sits in her new home, five minutes from me instead of the three hours during the past almost 13 years (and the closest we have been to one another since I left for college over thirty years ago) I have taken some time to reflect and share what I have learned as an only child suddenly becoming responsible for a parent who experiences a major health crisis.

  • Your priorities have to change – for a time or permanently.  For example, I had made the decision just two weeks prior to her initial hospital admission to give up a great deal of my social media interaction.  Facebook and email became a link to my extended family who live from South Carolina to northern Illinois to Texas as I kept them up to speed on mom’s journey. But not having all the blogs and twitter accounts and such made the ability to focus on mom much easier. I may return to some of these things but that is down the road.
  • Take it one day at a time. This was a day by day journey. At times it was maddening and frustrating and very much mentally and emotionally exhausting but it came one day at a time. Early in this journey I remember going to my hometown where mom was hospitalized and thinking that I would return home the next day but found myself heading out to a  local big box store  two days in a row for a fresh shirt. I began packing a suitcase after that experience just in case I needed to stay longer.
  • Take notes, lots of notes. I have a small spiral notebook which I used to take notes – of times for surgeries, phone numbers, names of people, things mom needed, and of medicines (which I am sure were misspelled!) and other information as the journey unfolded. It helped me to remember and share information with family and friends.
  • Work your support network. Only children do not have siblings to discuss, decided, and even argue with regarding medical decisions of and for their parents. That is probably a blessing at times but it is also a challenge when you don’t have family to help you make necessary decisions. I am grateful for a wife who worked in the medical billing field for several years and who helped me navigate the paperwork that started coming (and still comes) as mom progressed through her ordeal. I also was able to stay with family in both cities were she was hospitalized and that was very helpful.
  • Make sure the legal paperwork is in order. Not just wills but also power of attorney, health care representative, DNR (do not resuscitate) orders, and the like. The power of attorney is especially important to enable you to access your parent’s financial accounts to pay regular bills and access funds for medical expenses. This was one of my top priorities early in her journey and as her two major surgeries came into play.
  • Understand that scheduled tests and other medical procedures may not happen when they are scheduled. Several times tests and procedures were cancelled or re-scheduled on a moments notice.  I remember going for lunch in another part of one of the hospitals thinking one thing about an upcoming procedure only to find out something different an hour later! It happens. Be patient.
  • As much as possible let your parent make his/her own medical decisions. It was not my body that was facing two major surgeries. It was my mom’s body! She needed (and could) to make the decision. One of the biggest ones she had to make came at the end of a long day when a test had been moved back several hours and the doctor had a backlog of patients for the same test. By the time the doctor met with us it was early evening and mom was tired, I was tired, and some food and rest was needed by all. I was headed home, three hours away and asked if she understood the options before I left. She did. We talked the next day and she made the right decision.
  • Check your ego at the door. Not everything will go the way you want it to. I had to forget about money, what people thought, and what I wanted to see happen when I wanted it to happen.  As I did, the peace that came, even when I was frustrated, was remarkable.

This is my own story and journey. Yours, as an only child or even one of several children, may be different. My hope is that something here will be of help to you. Peace be with you.