The Atlas CareMap: My Caregiving Journey in Pictures

I came across Atlas of Caregiving in my search for useful tools to solve caregiving challenges. I’m intrigued by the deceptively simple concept of their Atlas CareMap. A CareMap is a visualization of your relationships. You use stick figures and lines to show who you care for, who else is involved in their care, and who cares for you. I decided to try it out and see what I could learn in retrospect about the last few years of my life, when both of my parents got sick at the same time.

I started by drawing a picture of what everything looked like when my parents were healthy. Arrows show who’s providing care to whom, and the style indicates frequency with which they provide care. Solid lines indicate help is provided daily, dashed lines are for weekly, and dotted lines are for occasional help.

My Atlas CareMap: 2010

 

When everyone is healthy, a CareMap looks pretty simple.

As you can see from this picture, we had a pretty sweet arrangement in 2010. All the adults were caring for each other, and my mom helped with our baby once a week or so.

CareMap Observations:

  • This CareMap makes me grateful. It reminds me that there was a time when my mother took care of my baby, something I’d almost forgotten!
  • It’s striking how simple it seems compared to what followed.

Read on to see how our family dynamics changed during the medical crises that we experienced in the next few years, and what the CareMaps reveal as I draw my caregiving journey.

My Atlas CareMap: 2011

A few things changed in our family in 2011:

  • my father was diagnosed with Stage III colo-rectal cancer
  • my husband and I had a second child
  • my mother-in-law (MIL) lost her home to a house fire

 

Space represents geographical distance. One of my brothers lives in Australia, so that figure is further away.

What’s Changed in this CareMap:

  • A line of support has been added between my husband and his mother as he helped her find a new place to live, coordinate with insurance, and recover emotionally from the fire.
  • A line of support has been added between me and my parents as I started to help them more.
  • The line of support between my mom and dad has become one way. On a daily basis, she was helping him more than he was helping her.
  • The line of support between me and my husband has disappeared.
  • The line of support from my mom to our son is gone.
  • I added my brothers in “stand-by” mode. They were ready to help, but nobody asked them to, so no support lines (yet.)

CareMap Observations:

This picture makes me tired. Why? Well, let’s look at what’s not on the CareMap:

  • There are no lines pointing toward me or my husband. All of our energy is going out to others, and all these arrows pointing away from us really illustrate how it felt that year. We were drained. We didn’t seem to have anything left over for each other. Our relationship didn’t exactly suffer, but we did feel that empty space between.
  • There are no babysitters in the picture here. The lost help from grandma hasn’t been replaced.
  • My mom is focused almost entirely on my father. Like me, she doesn’t ask for help, even when there are helping hands available.

I didn’t have this picture in 2011, but it’s clear what it’s telling me (and my mom, if she’d have listened): get some help!

My Atlas CareMap: 2012

I had a sense that things would change with my dad, because cancer detected in Stage III is pretty hard to eradicate. But none of us were expecting what happened next… In June of 2012, my mother had a massive stroke. My dad was still recovering from chemo, radiation, and surgery when it happened. After four months in recovery, my mom came home to continue therapy. In November, she fell and broke her hip.

 

 

What’s Changed in this CareMap:

  • The line of support between my mom and dad has flipped. Overnight.
  • Several teams of professionals at three different institutions supported my mom in her recovery.
  • Home care workers helped my mom at home.
  • My brothers are no longer in stand-by mode.
  • The line of support between me and my parents is now solid, to indicate daily help.

CareMap Observations:

  • Just looking at this picture makes me anxious. I think I spent most of 2012 in a state of shock, and this CareMap shows why. Look at all those people! It reminds me of how many unfamiliar scenarios we were in that year, and how chaotic it was as my mom’s condition changed from one week to the next.
  • This CareMap makes me anxious, but it also makes me proud of my family. The entire family was called on for support, and in our case everyone stepped up.
  • This picture also reminds me of the frustration of dealing with the healthcare system during a crisis. I was the communication link between every person and institution in this picture. Not a care management system, not a social worker, not a healthcare professional. Me. While I worked full time and took care of my own family. I was hardly qualified to be the conduit between all these professionals, but there wasn’t anyone or anything else to fill the void.
  • My parents invested in their friendships, and in crisis those friendships paid dividends. Their friends were as reliable as family, and it made a huge difference in my mom’s recovery and in their ability to stay at home.
  • Lastly, drawing this helped me remember the support I also had from work at that time. I feel grateful I was able to take the time to be there for my family.

My Atlas CareMap: 2013

Eventually, we settled into a new routine. In 2013, my dad’s cancer was in remission. While my mom needed help, my dad mostly took care of it. Which means we had a fragile system that only broke down occasionally, which after 2012 seemed like significant progress!

 

 

What’s Changed in this CareMap:

  • The lines of support have changed frequency (back to weekly for me, occasional for my brothers.)
  • A babysitter has been located!
  • Not coincidentally, the line of support between me and my husband is back.
  • My dad is no longer seeing the radiologist.
  • A smaller team of people are helping my mom at home.

CareMap Observations:

  • It’s amazing what you can get used to. While this picture looks so much different than where we started, I remember this year as a period of relative calm. My parents needed help, and they had it.
  • Even a little extra help and support makes a big difference. My husband and I started going out every Wednesday night around this time, and just knowing that we had a babysitter booked every week acted like a stress release valve all week long.

My Atlas CareMap: 2014

In 2014, my dad had knee surgery. Shortly after, his blood clotted and it was discovered that his cancer had recurred and metastasized. It wasn’t long before my dad couldn’t manage the house or my mom’s care anymore.

 

 

What’s Changed in this CareMap:

  • Several new doctors are added to the team supporting my dad.
  • The line of support between my mom and dad is gone.
  • The line of support between me and my parents is solid again.
  • A line of support has been added between me and my local brother.
  • A line of support has been added between me and my closest friend.
  • One of my brothers moved to Japan, so we now have two family members overseas.
  • I’ve left my job and I am no longer supported by work.

 

CareMap Observations:

  • Beware of single points of failure. The fragile system we had in place relied entirely on my dad’s health. When his health failed, they had to move.
  • Every line makes a difference. Somewhere along the way here, I learned to ask for help and the CareMap shows what a difference it makes for both me and my parents. My brothers were there all along, but it took me awhile to figure out how to accept their help. I also got more deliberate about staying in touch with a friend. This was a hard time of my life, but I had support from people who understood me. That made a difference.

My Atlas CareMap: December 2015

By early 2015, my dad was out of treatment options. The chemo was not effective, and it was making him sick and weak. My dad said goodbye to his oncologist, and after a short break, enrolled in a hospice program. As he steadily declined, my mother-in-law had a series of complex health events that scared the hell out of all of us.

 

 

What’s Changed in this CareMap:

  • A team of doctors and home care workers are attending to my mother-in-law as she moves between home and hospital with disturbing frequency.
  • The line of support between my husband and his mother is solid, indicating daily support.
  • The line of support between me and my parents is back to solid, for daily support.
  • My dad is being taken care of by a hospice team.
  • Mom’s progress has plateaued, and there is no longer a regular rehab team coming in for therapy.
  • My parents’ friends provide occasional support to me.
  • By late 2015, I’m back at work and in spite of having no tenure, I experience amazing support.

CareMap Observations:

  • That link between me and my husband was the first to go in earlier crises. In this, the worst crisis of all, we managed to not take each other’s support for granted.
  • The CareMap doesn’t show my emotional journey, but it does show more lines of support at this time than any other prior period. I can tell you that in spite of the grief I was already feeling, I knew I was going to be fine no matter what happened.

My Atlas CareMap: 2016

My dad died on the first day of January 2016. Within three weeks of that, my mom had another stroke. A few months later, she went to the hospital to be treated for an infection, and it was discovered that she had Type 2 diabetes. She spent most of the summer in a skilled nursing facility.

 

 

What’s Changed in this CareMap:

  • Once again, teams of people in three different institutions are supporting my mom.
  • My mom lives alone now.

CareMap Observations:

  • I feel kind of numb looking at this CareMap. I’ve been providing almost daily care for the second year in a row at this point, while working full time and caring for my own family. I’m tired!

My Atlas CareMap: 2017

By now, things have calmed down. My mom needs a lot of help day-to-day, and we have a team of friends, family, and professionals in place to provide it.

 

 

What’s Changed in this CareMap:

  • There are no hospitals, rehab facilities, or skilled nursing facilities on this map!
  • The frequency of care provided by family members is down overall as we have a stable plan of care for my mom at home.

CareMap Observations:

While I don’t trust things will stay the same at this point, I feel calm looking at this picture. We can sustain this arrangement indefinitely, because we know how to handle crisis, and we know how to help each other.

Conclusions

I highly recommend using Atlas CareMaps to draw out your caregiving situation — even (or especially) a hypothetical one. If your parents need help, do you know where it’s going to come from? Using it retrospectively, as I have here, I find it interesting that the drawings clearly reveal gaps I had to discover ‘the hard way’ over the past several years. The opportunities are right there in the drawings, too, if you pay attention to the arrows. Which way are they pointing? What frequency of  support is indicated? Are there people hanging around on stand-by that can be put to work (like my brothers)? The Atlas CareMap isn’t going to explain the emotional side of your caregiving equation, or tell you how to resolve your caregiving challenges. What it will do, though, is give you an objective lens through which to look. What you see might surprise you!

Written and originally posted by Karen Purze on Life in Motion Guide