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Topic What can our loved ones do to help PD Caregivers? Go to previous topic Go to next topic Go to higher level

By Reflection On 2012.04.28 10:44
A post by a new member, Cork, who has had PD for ten years, made me think about what our loved ones could do that would make it easier for the caregiver.
Yup, selfish in a way, but ultimately for the good of both.
We all vent in this forum, and come from very different circumstances - but often, we share similar issues.
A first cut, from my limited perspective:
1) Appreciation: Telling us, telling family & friends, how much you appreciate what we're doing. Doing thoughtful things for us.
2) Financial/Legal: make sure as much as possible you've protected your loved ones legally & financially. A good elder care lawyer can help here. Power of Attorney, thought-through health care proxy, etc.
3) Driving. Very fraught issue, but listen to family if they say there's an issue, and get educated about what PD can do to driving. A start:
Avoiding driving at night, or in low-light conditions (fog, rain, snow); using a GPS to help anticipate, eg, what lane to be in; avoiding highway driving can help make driving safer, longer.
4) Communication with Doctors: including loved ones in doctors visits; allow/encourage them to communicate directly with doctors.
5) Sleep: very individual, and PD disrupts sleep, but figuring out non-defensively whatever arrangements help the caregiver get a decent nights sleep is helpful
6) Messiness/organization: Negotiating "zones" so the messiness that's common to PD doesn't overflow everywhere; allowing the caregiver to help with organization and perhaps finances.
7) Education/support. Neurologist don't have time to communicate all that would be helpful for both the person with PD and the caregiver to know. So checking out forums, reading up on PD and PD meds, support groups etc. can help.
8) Communication.
I'm curious what other caregivers think - and also curious what our loved ones would say would make their lives better. There may be some conflict between the two, but communication can help.

By plcpainter On 2012.04.28 11:39
This is a very good post, full of a great deal of wisdom. Thanks! I would add: Sharing -- tell me how you are feeling; both physically, emotionally, and mentally. PD robs you of your facial expressions and my ability to "read" my beloved's expressions and feelings. Most of the time I only know what he's thinking if I ask and he's able to communicate it to me. Just knowing makes my part easier and makes me feel more connected to him.

By parkinit On 2012.04.30 23:24
These are my very personal additions:

Help ME when you can by taking dishes to sink (yes, and sometimes mine)

Dumping your own urinal rather than leaving it set until I do it.

Dumping your own urinal bag from the night before when you feel well enough.

Sometimes I think my PWP doesn't do these things because he has others to do them for him.

I know our PWP only have so many good hours in the day, and I realize they want these hours to do quality things (I've been told this many times), however, my day is spent doing for my PWP with very little time for "quality things," too.

By the way, I mentioned to my PWP that KK had suggested on here that she and her PWP have a day they don't talk about PD. He said he didn't think he could go a day without talking about it "right now."

By barb On 2012.05.01 12:34
Two nights ago I went to bed at 7:30. My DH watched a movie, avoided getting crushed ice, didn't use the hoverround, went into his office. He did everything he could to let me sleep knowing that I'm exhausted all day because he is up half the night. He naps during the day but I can't. Just helping me get a couple of good nights sleep every week is much appreciated.

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