Chris Lauer / Bohemian Empathy

Cariloop Stakeholder Interview:

Caregiver
Dedicated Healthcare Coaches walking with you through
every challenge you face while caring for a loved ones.

Caregivers: Vickie and Virginia (Sisters from a very large

family) Ages: 49 and 65 Dependents: Elderly parents

1, What are the biggest challenges of being a

caregiver.

- The time spent taking care of the dependent.

o ​Insight: ​Life becomes taking care of someone else. - Time away
from work due to multiple doctor appointments and minor
emergencie
s
​ doctors and 2 elderly parents with constant appointments.
o 5
o M​ any multiple weeks stays in the hospital for minor
emergencies/surgeries followed by multiple weeks stays in rehab
facilities. - Keeping appointments straight.
o ​Constantly shifting appointments with doctors and in-home
health care visits. Many appointments cancelled at the last minute
by the healthcare professionals. - Managing prescriptions from
multiple doctors.
o ​With so many prescriptions, medication interaction was a
constant issue. ​Insight: ​Doctors don’t communicate with each other. ​o
Anecdote: ​Dropped the box with all the pills separated for each day.
 Medication went everywhere and was impossible to sort out. “Would be
nice if medication came sorted and packaged for daily consumption”. -
The time spent caregiving takes away from normal activities day-to-

day. ​o ​Having to speed through normal day-to-day activities

like
grocery shopping in order to get back to the
dependent.
o ​Anecdote: ​Caregiver had to find a dentist closer to home in
order to spend less time away. -
Decreasing dependent mobility

2. How do challenges affect the

caretaker?

- Missed a lot of work. Both caregivers are fortunate to have a job

(Flight Attendants) that allows them to move their schedule around. -
Extreme fatigue. - Difficult to get away from the house for even a few
minutes (Stir
crazy). - Normal life activities became increasingly difficult to
accomplish. ​o ​Had to tag team in order to shop for groceries,
clothes etc.

3. What does a good day look like for you and the
dependent?

- Wakes up feeling good. - Can do exercises. -

Medications don’t interrupt the good feeling. -
Not having to go anywhere
o ​Getting ready is hard, stressful and wore the dependent out
fast. ​o ​Mobility added a lot of time to any activity outside the house
- No doctor appointments, in home visits.
o ​Doctors caused a lot of stress. The dependents were always
 worried that they would find something
wrong.

4. Are there changes to the things you do for the dependent over
time?

- Dependent mobility got much worse as time passed. At the end the
caregivers ​had to bathe, dress, and physically manipulate the
dependent into and out of a wheelchair just to do anything. - Time
spent taking care of the dependent increased until it was nearly
100% by several family members at the same time. - Dependent lost
the ability to do normal tasks over time (ie, eat, dress,
bathe) - Dependent’s became less and less able to communicate. For
the last
several years we were guessing what was needed/wanted. -
Dependent’s stress level increased dramatically over time.

5. How much outside help is required for the dependent? For

the caregiver?
- ​Dependent: ​After minor emergencies an Occupational Therapist
would be assigned to the dependent for several in-home visits.
o ​A Physical Therapist would have been much more helpful. ​o
Therapists changed appointments constantly and often at the
last minute. Not sensitive to patient routines. ​o ​Therapist visit
consisted of taking BP and pulse which is
something the ​caregiver​did daily. ​o ​Therapists were always in a
hurry to get to their next patient. ​o ​In-home visits from therapists
were not helpful overall. - ​Caregiver​: There were many siblings who
pitched in from time to
time. Would have been nice to have some outside help as
family members often added to the problems.

Some takeaways:
- Healthcare for seniors seems to be all about providers making money.
- All providers were cookie cutter. Nothing was ever tailored for what
was going wrong with the dependent. I.e. sending an occupational
therapist instead of a physical therapist because that’s just how things
are done. - A patient advocate would have been a serious help.
Someone to help
keep appointments straight and managing medicines don’t have
dangerous interactions. - A single person dealing with an almost
immobile dependent is made
harder
by:
o ​Having to open doors while pushing a wheelchair.
Anecdote:
Several times the caregiver had to manipulate heavy self-
closing doors and the wheelchair at the same time. ​o
Ramps not being available in a lot of locations, ​o ​The
weight and bulk of the wheelchair when loading and
unloading it. ​o ​Electric scooters provided by some stores aren’t
always
charged.