PowerPoint Presentation

Parkinsons Disease Photovoice Project: The Care Partners Story

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

Losses/grieving

This is (my husband) and his chair. Sometimes its a peaceful time. Sometimes he just sits there for hours Sometimes I see this negatively and it makes me think about the things we cant do anymore.

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

Adapting to Changes

8

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.

This is (my husbands) work area where he spent a lot of time. Figuring out what I need to keep and what I dont and I have already taken a whack at cleaning it out and this is still what is left down there.

Safety

Im scared that she would fall down the steps... Thats why that is in front of our steps. I dont 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.

15

(My wifes) 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 wont fall on the floor.

Sleep disturbance

When she is unsettled during the evening she can go in here...so that she doesnt disturb me. I need my sleep. She has interrupted sleep due to frequent toileting. When she is up, I am up Im probably short with her when I dont sleep.

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

Time for self/self care

Its a very positive time for me to be out, for me to bicycle down this way or that way. Its a refreshment for my life. And my mind and my soul opens up when Im out walking or along the river.

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). Its good to get away.

Care Partner Priorities

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..

This is our son picking up (my husband) for the day program. It is very helpful. I wouldnt be able to go to yoga if (our son) didnt do that. And I know that they have a nice time together. It gives them time for conversation.

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 its 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.

Anticipating the future

He was using a walking stick, now hes using the walker more. I do have a wheelchair in the garage that I have brought in on occasion when his balance is not goodI dont think we would get a wheelchair into the bathroom.

A lot of clothes. Its just way too many things. When we move we are going to have to downsize; its too much to deal with. The laundry sometimes gets overwhelming.

The Journey

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.

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

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 Parkinsons; you are our heroes. Thank you for your courage and strength as you walk this journey.

Somewhere over the RainbowIsrael Kamakawiwo'oleDiana's wedding CD, track 1, disc 1/12001International212022.67eng - Amazon.com Song ID: 213796004