Enough already with the pamphlets and the hotlines. Time to ban anyone from saying, "Put on your own oxygen first". Most caregivers know that the plane crashed a long time ago, so cut the platitudes and "You must be a saint," and lets get caregivers some real support within the medical community.
Here is a link to today's column on Caregiver Support:
http://www.timesunion.com/opinion/article/Cameron-Let-s-give-caregivers-real-help-3445761.php
Showing posts with label help. Show all posts
Showing posts with label help. Show all posts
Friday, March 30, 2012
Friday, February 10, 2012
Free Legal Services at Albany Health Law clinic
Here is another regional resource for individuals and families dealing with cancer. Experienced health advocates and second and third year law students staff the Health Law Clinic at Albany Law School. They can advise and guide you on issues that range from disability rights, employment law concerns, securing benefits and the rights and supports for caregivers.
The services are free.
For more information call: 518-445-2328 or look at the Albany Law School website: www.albanylaw.edu
Wednesday, October 14, 2009
Lotsa Helping Hands
Today at the YMCA I talked to a man who is caring for his wife who has cancer. It’s been a long haul and we talked about how a hospital can take over your life and how hard it is to “Take care of yourself”, as everyone tells a caregiver.
The hardest thing, he told me, was all the phone calls every night. Everyone wants to know how she’s doing and what the doctor said and what happened today. This man doesn’t email and the phone calls are almost the same one after the (at least ten a night) other. If you have been there you know this is true.
But here is a resource for caregivers and families coping with caregiving and trying to keep everyone connected and up to date. Take a look at the website: Lotsa Helping Hands.com It is a free web-based service that allows you to coordinate care, organize family members and helpers, best of all you can post updates and messages for everyone who wants to know how the patient is doing and what the doctor said today.
You post your update and it is emailed right away to anyone who signs on. Free for the family and free for friends. There is a calendar function to schedule chores, meals, rides etc. And tons of caregiver info as well, including, yes, “Take care of yourself!”
The hardest thing, he told me, was all the phone calls every night. Everyone wants to know how she’s doing and what the doctor said and what happened today. This man doesn’t email and the phone calls are almost the same one after the (at least ten a night) other. If you have been there you know this is true.
But here is a resource for caregivers and families coping with caregiving and trying to keep everyone connected and up to date. Take a look at the website: Lotsa Helping Hands.com It is a free web-based service that allows you to coordinate care, organize family members and helpers, best of all you can post updates and messages for everyone who wants to know how the patient is doing and what the doctor said today.
You post your update and it is emailed right away to anyone who signs on. Free for the family and free for friends. There is a calendar function to schedule chores, meals, rides etc. And tons of caregiver info as well, including, yes, “Take care of yourself!”
Saturday, February 21, 2009
The Dry Cleaning
Today in our caregiving group we were talking about what to do when someone asks, “How can I help?” Often the caregiver is so immersed in the day to day of caregiving that they can’t see what someone else could do to help.
One woman told the group that after offering help many times to her good friend: “Can I do the laundry? Can I cook something for you? Can I go to the drugstore?” Finally the friend said, I don’t know how to print something off my computer, can you do that?” It reminded me of the time in my life---years ago—when I was taking care of my brothers…both older than me and both very ill. They were dying at the same time. They lived in Pittsburgh and I lived in Baltimore. I would fly to Pittsburgh on Fridays and do laundry, go to hospitals, meet doctors and nurses and patch it together and fly home Sunday or Monday. I thought I had it all together even though it was hard. I was working full time and at work people were saying things like, “Isn’t she amazing” and “How calm she is doing all this.”
That was until the Monday I flew home from Pittsburgh and went to my closet to dress for work and there were no clean clothes. All my work clothes were at the dry cleaner or in the car to be taken to the dry cleaner. That was the day I lost it. Sobbing. Hysterical. On the floor. Gasping for breath. I managed to call a friend and between sobs choked out he words, “clothes” “dry cleaner” and “can’t do this.”
That friend came to my house. She brought me a clean shirt and blazer and she took the dry cleaning tickets and my bag of dirty clothes. For the rest of that summer she took care of the dry cleaning. Just that. The dry cleaning. That was the task that broke me and that was the help that saved me.
It’s the seemingly small stuff. It will be something different for each caregiver. So probe and watch. Then figure out how you can help.
One woman told the group that after offering help many times to her good friend: “Can I do the laundry? Can I cook something for you? Can I go to the drugstore?” Finally the friend said, I don’t know how to print something off my computer, can you do that?” It reminded me of the time in my life---years ago—when I was taking care of my brothers…both older than me and both very ill. They were dying at the same time. They lived in Pittsburgh and I lived in Baltimore. I would fly to Pittsburgh on Fridays and do laundry, go to hospitals, meet doctors and nurses and patch it together and fly home Sunday or Monday. I thought I had it all together even though it was hard. I was working full time and at work people were saying things like, “Isn’t she amazing” and “How calm she is doing all this.”
That was until the Monday I flew home from Pittsburgh and went to my closet to dress for work and there were no clean clothes. All my work clothes were at the dry cleaner or in the car to be taken to the dry cleaner. That was the day I lost it. Sobbing. Hysterical. On the floor. Gasping for breath. I managed to call a friend and between sobs choked out he words, “clothes” “dry cleaner” and “can’t do this.”
That friend came to my house. She brought me a clean shirt and blazer and she took the dry cleaning tickets and my bag of dirty clothes. For the rest of that summer she took care of the dry cleaning. Just that. The dry cleaning. That was the task that broke me and that was the help that saved me.
It’s the seemingly small stuff. It will be something different for each caregiver. So probe and watch. Then figure out how you can help.
Sunday, September 21, 2008
Let Them Help
Another conversation.
A friend wants to organize folks to prepare and deliver meals.
“Just one a week” she says. I’m stalling. I tell her, “He’s going to work, he’s OK.”
“This isn’t for him”, she says, “This is for you. You need the help.”
I am reluctant.
I keep thinking we’ll need food later, need more help later. I live as if there is a finite amount of help and I don’t want to use it up now while things are relatively manageable.
I think they are but “relatively” is key.
I am stressed and I know it. There is no downtime. I get angry in the car. I feel like every second of my life is scheduled and accounted for. I have a list on my desk and a list in my purse and a list on the passenger seat of my car. I can’t breathe.
John is tired. Yes, he is back to work but that’s all he can do.
I have my job, my writing and then all the errands.
Having some one else prepare a meal once a week would be great. It would cover two meals and cut down on shopping and cooking. John can’t help with those things because of the sensitivity to cold and the neuropathy. He can’t shop or cook.
But I am stalling.
Asking for help means something.
It means I cannot do this alone.
I want to be the one who takes care of him
And I can’t.
That feels really bad.
A friend wants to organize folks to prepare and deliver meals.
“Just one a week” she says. I’m stalling. I tell her, “He’s going to work, he’s OK.”
“This isn’t for him”, she says, “This is for you. You need the help.”
I am reluctant.
I keep thinking we’ll need food later, need more help later. I live as if there is a finite amount of help and I don’t want to use it up now while things are relatively manageable.
I think they are but “relatively” is key.
I am stressed and I know it. There is no downtime. I get angry in the car. I feel like every second of my life is scheduled and accounted for. I have a list on my desk and a list in my purse and a list on the passenger seat of my car. I can’t breathe.
John is tired. Yes, he is back to work but that’s all he can do.
I have my job, my writing and then all the errands.
Having some one else prepare a meal once a week would be great. It would cover two meals and cut down on shopping and cooking. John can’t help with those things because of the sensitivity to cold and the neuropathy. He can’t shop or cook.
But I am stalling.
Asking for help means something.
It means I cannot do this alone.
I want to be the one who takes care of him
And I can’t.
That feels really bad.
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