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CARENOTES | Past Carenotes | Let's Talk


Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 05/14/13


I think we caregivers are not noticed for what we do. We save the government a lot of money every year. What benefits do we have? I am a caregiver 24/7 with no breaks.


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Name: Nancy
Location: Bartow FL
Date: 05/27/2013
Time: 11:50 AM


I had to go on three different depression and anti-anxiety meds. The exhaustion is overwhelming. My partner will not get Medicare for another month when she turns 65. She has no health insurance. Her insulin and other medications have all been out of pocket for the past 3 years. friends send me well meaning cards with restful pictures and pithy sayings like, "My help cometh from the Lord." No disrespect to anyone's beliefs but the Lord has not changed sheets and bed bathed her at 3 am for the third time since bedtime when her diarrhea overflows her diaper. Her wonderful church friends call more to complain about her absence at church meetings than to offer help or even ask how I am coping.

Name: Bette
Location: DelCo, PA
Date: 05/22/2013
Time: 05:58 AM


Beverly in Berkley: I have family out in the East Bay area, who also have no insurance. There are several free/low-cost clinics there, where you can get basic health screenings, check-ups, and health care. Please Google them, and contact them.

Name: Meredith
Location: Olympia, WA
Date: 05/20/2013
Time: 10:24 AM


Ditto what Teresa and Bette stated earlier. Check your local (county) area agency on aging. They may offer in home consultation if you can't leave your loved one to go to their office. Check out Caregiver Support Programs such as "Powerful Tools for Caregivers" and local area Caregiver Support Groups. Some may provide subsidies for Respite Care, Housework and Errand help, Legal Assistance, or know where to refer you if they don't have the service in house. Get help now, BEFORE you burn-out, don't wait!

Name: Renee
Location: Chicago
Date: 05/20/2013
Time: 05:26 AM


I agree with Art and the two replies that have been posted so far. No employer would be able to have an employee work 24 hours a day with no time off for 365 days a year. I often feel like an indentured servant. There should be laws that protect primary caregivers. 40 percent of us will die due to stress and other medical conditions which are caused by care giving. There is no ICD9 code for care giver syndrome, (ask your doctor what an ICD9 is) yet there is an ICD9 for chronic fatigue syndrome. The expense of caring for AD patients would escalate so fast if primary care givers stopped providing the care they give. Or perhaps the government would just let the AD patients become homeless like the other mentally ill. We need to fight for rights and we need to do it now before 4 of the 10 caregivers you know die.

Name: Jim
Location: Boynton Beach, Fl.
Date: 05/20/2013
Time: 04:34 AM


It's not just the government taking advantage of us it's hospitals. I gave my ex-wife a place to live when her current husband decided he's rather buy drugs than pay rent. She had chronic pain at that time but could get around on her own- no car- not much money. Recently she had an infected knee that needed surgery- TWICE- then she fell- she can no longer function on her own and the hospital never asked if she had someone to care for her- they released her at 1040PM- who gets released at 1040PM. The family of my ex are deadbeats- not one of them (2 sisters 4 brothers within an hour's drive) visited her in the hospital- only one sister calls - infrequently - and that's more about her guilt than any concern for her sister. Since I am not related I have no rights to information about her health nor do I get to give much input - the US is going to hell. I wish I had some advice for you but you need to contact Social Services in your area before you need a caretaker.

Name: Ravyn
Location: Florida
Date: 05/19/2013
Time: 01:40 PM


I have checked into various agencies with benefits or helping hands for caregivers. Sadly, my husband has young onset parkinson's and is only 50 years old. The agencies I've found only provide assistance to caregivers of people 60 and older. I work full-time as our main income and then work full-time at home in managing the home, his medications, his doctor's appointments and everything else that comes up. Where's the acknowledgement that it's not just our senior citizens who need full-time caregivers?

Name: Beverly
Location: Berkeley
Date: 05/19/2013
Time: 06:48 AM


Hi. I'm also a care provider , working 7days a week; without health coverage. I'm providing care for those that need daily assistance, yet I'm unable to seek medical assistance for my self. What should I do about this?

Name: Linda
Location: Kansas
Date: 05/15/2013
Time: 10:10 AM


I do agree that we need more benefits for the work we do. However, I keep plugging ahead to do what I believe God put me here to do. I too am a caregiver 7 days a week, plus another job. Occasionally, I get relief help (in 2 1/2 years, I have had about 2 weeks off). I always tell people, the benefits I get from being a caregiver I can't put on paper. I don't take near as much for granted in my life anymore. God Bless the Caregivers!!!!

Name: Bette
Location: Delco, PA
Date: 05/14/2013
Time: 05:56 AM


Many Area Agencies on Aging have caregivers' support programs. Check out this government agency (they're under various names, depending on the county), and don't forget the VA if your loved one is a vet.

Name: Teresa
Location: MD
Date: 05/14/2013
Time: 05:16 AM


Check with your state government\local for your area's Deparment of Aging. You might be able to get some respite through them.



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