Caregivers

[Parkiewife]

Question for any caregivers. Do we have a separate site to pose questions and share our experiences with our journey as caregivers? I want to post frank observations without upsetting pwp. Thank you!

[park_bear]

There is not a separate site as far as I know. Plenty of caregivers post here very frankly and usually receive warm support. Parkinson's is highly variable. If you keep to the specifics of your personal situation without making broad generalizations nobody here will be offended.

[Hidden]

I’m with you on that! I think if I read between the lines I know why you ask that. I to am a caregiver!

[wifeofparky]

As a former caregiver and RN, I facilitate a Caregiver Support Group through our local PD chapter. We meet once a month and our members are very frank and open in our discussions. I strongly urge you to go to Parkinson.org and search for meeting places in your area.

[Parkiewife in reply to wifeofparky]

Unfortunately, our caregiver support group doesn’t like to discuss problems with caring for pwp. More of a chit chat social hour. I stopped going after I asked a few questions which were ignored. Basically, folks in denial. I am a realist and perfer to have questions answered in an adult way. 😩

[wifeofparky]

I am so sorry. Wish you could join us. We do have chit chat sessions but usually at the end. I promote planning ahead and being realistic about the current prognosis. We have speakers that the group agree on so we can stay on top of new treatments and studies. If you have a local Chapter that the group operates through, I'd let them know that they are not meeting the goals of a support meeting.

We have had a few partners come and not return until they are in crisis because of the denial factor.