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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