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By lurkingforacure On 2018.05.24 15:40
I know most here are retired and barely hanging on, but....perhaps this might help someone who is struggling with just how sad and depressing PD caregiving is.

I have found that non-PD obligations can be vital to coping, and encourage anyone who can to get an activity or two to do so. It could be an online book club (do those exist?), gardening in the backyard so you can keep an eye on your loved one, a church activity, reading to kids at the library, anything, really.

While having kids at home and working definitely takes caregiving to a whole 'nother level, at the same time, I don't know how I would handle things if I didn't have those responsibilities. Besides forcing me to focus on something other than PD, it requires that I interact with other people (parents, teachers, clients, etc.) and deal with all kinds of non-PD things that I have to be conversant in. It creates a non-PD world that I have to function in, which, oddly, I have found allows me a mental break from the sadness of caregiving and watching PD steal ever more from my husband and our family.

One of the books on caregiving that I've read was by woman whose husband also had PD. It's called "No Saints Around Here" and I think her last name was Toth. I noticed that she did more and more things on her own as her husband's PD got worse and worse, and I think that is one of the things that allowed her to cope as well as she did before he passed away.

I had been struggling with a deep sadness trying to handle everything, but then started to see things differently. Weird as it sounds, I am actually grateful for all the things I have to do that take my mind off of PD. There are days it's just too much and I want to smash my phone or computer or both, but then I look at my husband who can't even use a computer anymore, and I am thankful.

It's not just our loved ones with PD that need activities, but caregivers too.

By LOHENGR1N On 2018.05.24 16:44
Absolutely! That's why I tell those just Diagnosed or recently diagnosed do as much as you can for as long as you can. And Spouses or Caregivers to let them (even if you can do it quicker and with less trouble) Not only for patient but some caregivers rush in to help or do everything while they have no idea how long this battle lasts. It's not a cold or flu it's Parkinson's and it's a bitch. Burnout looms just over the horizon. The Caregivers have to have somewhere or Something to escape to if only for a short time or P.D. will drag them down.

By lurkingforacure On 2018.05.24 20:17
Thank you for that reminder Al, about having the PWP do as much as they can, because boy oh boy, does my husband ever want me to do everything for him. It's so very hard to know what he can do safely, albeit slowly, and what is simply too much, and it can vary depending on what kind of day he is having.

So how do caregivers know what their PWP can safely do by him or herself? How much time is reasonable for a PWP to do something on their own, before we step in and help or do it for them?

By Lynn03 On 2018.05.24 22:50
I have worked in a profession providing accommodations to people with disabilities for a long time. This has had an influence on how I deal with change at home as well. While it would be unethical and just plain wrong to "work" the same way at home as I do at work, I do think about this issue of speed and safety. So I've taken a lot of steps along the way. For example, I bought lighter weight dishes and rearranged placement of pans to allow him to continue cooking -- because it is the one thing he will do even if it is slow. Also, I don't just "help." I ask, "do you want or need help with that?" So far, we are managing with these adjustments and strategies. Although over time this may become more difficult. He has historically simply adjusted his interest in doing things to the new limitations.

By greyeyed123 On 2018.05.25 12:34
Monday I stopped to get mom's prescriptions after work. Then I realized she had another prescription I had to go get. Then she wanted me to make sure a graduation card got filled out and mailed. I also had to make out some bills. I left to do these things. When I got home, she said she was almost out of Poise pads...and I did get a bit angry.

Meanwhile our little dog was acting strange. He had a cough for a couple of months. Although I was exhausted, I took the dog to the Vet. They said his heart was twice its normal size, and his liver was also swollen, and he might not make it to the vet hospital 15 minutes away. They tried to stabilize him for the trip, but he died in my car on the way.

I think I'm dealing with this pretty well, but I still feel guilty that I should have addressed the dog earlier, and angry that the Parkinson's caregiving takes up so much physical and emotional energy that I postponed dealing with the dog's health until he was dead. Maybe I'm not dealing with it very well.

By Busymom On 2018.05.25 16:25
I'm so sorry to hear about the loss of your pet. The ripples of Parkinson's can spread farther than most people realize. It is so very hard to balance everything, all we can do is the best we can. Again, my sympathy for your loss.

By Lynn03 On 2018.05.25 16:39
Dear Greyeyed,

I am also sorry to hear about your dog. It is definitely challenging to attend to everything at the same time.

I hope someone can step in and help you out some. It seems as if the time and intensity of attention required to do everything sneaks up on us by increasing so gradually that noticing multiple needs or responsibilities is hard. I hope you can let the guilt go and get a breather. Be kind to yourself.

~ With all sympathy....

By Lynn03 On 2018.05.25 17:23
Hello Lurking,

Thank you for the note about the book. I just read a sample before hitting the "buy" button on Amazon.

I definitely agree with you about the responsibilities outside the home helping to balance the care giving. I remember care giving for my mom years ago and it was definitely different in that while I had work, she was also eligible for some hospice support workers. It provided the blessing of relief for both of us.

And I agree -- I definitely keep doing some dog walking, gardening and other craft hobbies that are done while he sits / sleeps. The distraction and stress relief of those activities are essential.

By lurkingforacure On 2018.05.25 18:00
I am so sorry for the loss of your pet, that is heartbreaking.

By mylove On 2018.05.25 22:44
Side note - Susan was a member of this board a long while ago, and was a friend. Thank you for supporting her book. Her road was tough, and she speaks very eloquently about the caregivers struggle.

By BFB On 2018.05.29 15:56
this is a refreshing read because it is real.
no one is having an easy time, but the role of caregiver feels like a lighter burden to me.
cannot imagine having PD.

hoping all, caregivers and PWPs, had a good Memorial Day weekend.

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