This document summarizes the stories and experiences of care partners of individuals living with Parkinson's disease. It describes the daily struggles they face, including losses of independence for their loved ones which affects their routines and activities. Care partners discuss adapting to their loved one's changing needs over time, safety issues that arise, disrupted sleep, finding time for self-care, and anticipating future care needs as the disease progresses. Overall it depicts the challenges of caregiving but also the strength and resilience of taking the journey together.

1. Parkinson’s Disease
Photovoice Project:
The Care Partners
Story

2. These are the pictures and stories shared
by care partners living with someone who
has Parkinson’s disease. This is their
story of how Parkinson’s disease affects
their daily life.

3. Losses/grieving

5. This is (my husband) and his chair.
Sometimes it’s a peaceful time.
Sometimes he just sits there for hours…
Sometimes I see this negatively and it
makes me think about the things we can’t
do anymore.

7. You lose the taste, you lose the
texture, and you lose the visual
because it does not look
appetizing. This is a huge loss.

8. Adapting to Changes

10. Over the years we have gone
through a series of mobility issues.
Now she is in the wheelchair all
the time….the progression has
been slow enough that it has been
manageable.

12. This is (my husband’s) work
area where he spent a lot of
time…. Figuring out what I
need to keep and what I don’t
and I have already taken a
whack at cleaning it out and
this is still what is left down
there.

13. Safety

15. I’m scared that she would fall
down the steps... That’s why that
is in front of our steps. I don’t
know if a gate would help
because she would hit the gate
and go over the top of it. This is
wider, I think it is better.

17. (My wife’s) dexterity is not what it
used to be and I would hear the pills
hit the floor. With two dogs it could
be a problem. I think I always got
the pills. Now, Saturday night I
reset them for the whole week. It is
such a relief knowing that they
won’t fall on the floor.

18. Sleep disturbance

20. When she is unsettled during the
evening she can go in here...so
that she doesn’t disturb me. I
need my sleep. She has
interrupted sleep due to frequent
toileting. When she is up, I am
up… I’m probably short with her
when I don’t sleep.

22. With Parkinson's it is very
seldom that we have a night of
sleep all the way through. So a
lot of times I’m not very
rested…. It’s all part of life
together; again it is adapting
to life and the journey.

23. Time for
self/self care

25. It’s a very positive time for me
to be out, for me to bicycle
down this way or that way. It’s
a refreshment for my life. And
my mind and my soul opens up
when I’m out walking or along
the river.

27. This is the great escape…
I am going on a trip for 4
days this year, we worked
it out so there will be
someone with (my wife).
It’s good to get away.

28. Care Partner
Priorities

30. We are getting into the things
that make my life a little easier
and one of them is the day
program at Struthers, Club
Create. It is a respite day for
me…..

32. This is our son picking up (my
husband) for the day program. It is
very helpful. I wouldn’t be able to
go to yoga if (our son) didn’t do
that. And I know that they have a
nice time together. It gives them
time for conversation.

34. To get started and going in the morning
takes a long time. The body just will not
move….it takes her longer to shower, longer
to wash, sometimes it’s hard to get her
jewelry on, even her clothes can be a real
problem.
The tough part is she knows that and then
she feels guilty and apologizes for being so
long getting ready.

35. Anticipating
the future

37. He was using a walking stick,
now he’s using the walker more.
I do have a wheelchair in the
garage that I have brought in on
occasion when his balance is not
good…I don’t think we would
get a wheelchair into the
bathroom.

39. A lot of clothes. It’s just way
too many things. When we
move we are going to have to
downsize; it’s too much to
deal with. The laundry
sometimes gets
overwhelming.

40. The Journey

42. The tapestry really came out of Jacob
wrestling with the angel. The angel leaves
Jacob handicapped, with his hip being
permanently damaged. But at the same
time he wounded Jacob he also blessed
him.
So in situations you can be both wounded
and blessed at the same time.

44. The fog will lift
eventually and every day
is a new day.

45. Acknowledgements
• Thank you to all the participants for sharing a
part of their life and their journey.
• Thank you also to those who are living with
Parkinson’s; you are our heroes. Thank you for
your courage and strength as you walk this
journey.