Caregiver feedback

This forum was created for those with an incredibly hard task: taking care of someone they love who is ill.

Caregiver feedback

Postby Catherine Poole » Wed Nov 02, 2016 6:52 am

Do certain things people say sometimes irritate you? I am told all of the time that "you have too much on your plate." Another one is "I can't imagine what you are going through.:" Of course there are great ways to handle this and empower those who care to pitch in. Love to hear your ideas.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Caregiver feedback

Postby jeffb » Wed Nov 02, 2016 8:20 am

Hi Catherine. How are you doing?

Yes, people said things like that to me for quite a while (especially the second one) and I too found them irritating, even if they were well meaning in intent, as they don't really offer anything constructive. I still get such comments with my own struggles concerning my son's addiction. The ones I especially got/get annoyed with are sentences that begin with "You should...", "You ought to... ", "You need to..." or some other such comment. I typically take them to mean I'm not doing something right or I'm being judged. The trouble is I have my own internal "shoulds" as well and I don't need extra external ones too.

The best I have come up with with is something like "Thanks for trying to understand, I appreciate that." and depending on my relationship with the person I may ask them if they have a few minutes to talk or listen a bit. Having someone to really take the time to listen is one form of pitching in that really works for me.

I hope this helps a bit Catherine.

Jeff
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Re: Caregiver feedback

Postby Catherine Poole » Sat Nov 05, 2016 5:50 am

I am quite interested in the caregiver perspective, thanks Jeff! I am experiencing a lot of sadness and seeing my loved one become another person. He is progressing in the illness and there's nothing to do about it. But it has given me the resilience to consider a positive way to help others and now I would say I do know how they must feel. Sorry you have to go through another tragedy too. I certainly appreciate you coming back to visit us here!
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Posts: 10782
Joined: Wed Jan 02, 2008 12:09 am

Re: Caregiver feedback

Postby abdorma » Tue Nov 29, 2016 10:44 pm

Catherine Dear,
I logged on to the MIF page tonight for the first time in many moons to donate money and took a tour through the Forum and found several items from you that lead me to think you have become the caregiver for your husband who I think has Lewey Body Dementia?

Many many thoughts come to my mind: how is that you who have provided a lifeline to so many of us, must now struggle with the difficulties of caring for someone with a horrible disease and who must watch her spouse of many years deteriorate? It is not right. I am thinking of all the things you have posted over the years about mindful meditation, taking care of yourself, letting others help, etc. You do not need to be reminded of any of them. Watching the person you love die right before your eyes is like having open heart surgery with no anesthesia.

My heart is breaking for you. You and your family will be in my prayers and thoughts. May you be surrounded by people who wish to support you and your family. Let them in. Strong women used to being in charge have a hard time admitting it is time to allow help in. Trust me. I was one of them. Hopefully you have let them help you.

Three years after losing my husband to melanoma, I can only say that taking care of him was one of the great gifts of my life. It was also one of the most difficult, physically and emotionally draining experiences I have ever had. I hope you have found a forum that was as supportive as the one I found right here! Again, I will be praying for all of you.

Most sincerely,
ann

p.s. About three weeks before Tom died, somebody hacked the caregiver site with an "ad" about losing weight or skin care or something. I believe I went ballistic right here on this forum. And of course it really wasn't about the hacker and you totally understood that. And you said something to the effect of "I am glad we are here for you." So, the next time someone tells you have too much on your plate, you just come here and vent!
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Re: Caregiver feedback

Postby Catherine Poole » Fri Dec 02, 2016 11:34 am

thank you Ann for your kind words I find myself asking why a lot and then just feeling sad. There is no explanation why a perfectly fit person should get this nightmare disease. Trying to make the best of the situation is all we can do. Kind words do help!
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Posts: 10782
Joined: Wed Jan 02, 2008 12:09 am


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