In my many years caregiving, I have been drawn in to read articles that hint at some real help for the overburdened caregiver.

Here the doctor quotes statistics about the severity of the problem. With a problem this immense and real, the solution is not to throw the responsibility back on the caregiver. Caregiver's health at risk...solution: GO TAKE CARE OF YOURSELF!

Caregiving takes a huge toll on the caregiver, thousands spent extra on healthcare each year, or in my case never ever going to a doctor nor dentist in over 9.5 years. Telling the caregiver to go to the doctor and get help. With what resources? Health faltering because of sacrifices to care for frail elderly parent? Better take care of yourself so you can still do it. Better find help..somewhere...

A valuable article would be one that investigates WHY there is no real help for family caregivers, who are often abandoned by others in the family. Spread this out nationwide, these non participating family members can "participate" by paying taxes to help support those willing to do caregiving.

Where are the government aid programs?Can the full time caregiver be offered early Social Security at full payout? and full access to Medicare, regardless of age. Credits given for "work" quarters to maintain qualifying for Social Security.

I read an article once by a psychologist who said that the stresses of full time caregiving were so extreme, that the condition should be a valid mental disorder, and once diagnosed, the caregiver would be eligible for Social Security disability payments! That gave me an idea, not to condemn the caregiver with actual diagnosis of severe mental disorder (and then how qualified to act as caregiver?), but "disabled by Proxy" collecting cash benefits applicable to the degree of disablity of their loved one.

An agency could oversee, checking in with caregiver periodically offering short coaching sessions about ambulation and transferring, changing diapers while patient still in bed, communication tips for reaching those with dementia, preventing bedsores, etc. Arranging for loan of medical equipment. Using buying power to offer cheaper prices for incontinence supplies, etc.

These statistics. I have read them over and over. Everyone says it is SERIOUS. Just look at the numbers. Just imagine what will happen in next ten years with the Baby Boomers aging...as elderly caregivers now and later as a frail senior needing care themselves. Continuing to throw the solution back on the volunteer caregiver is not the solution.

A friend of mine is an advocate for caregiving issues. She talked to her governor about getting help for family caregivers. Fat chance, she said of her visit. He told her that other family members will have to step up to help. Well, government can create a program or PR campaign to enourage that. Because "family coming to the rescue" is not a US value, not like it is in other countries.

My nurse niece lives now in Texas, and says that the Latino patients' rooms are often crammed with family members, almost a party. They are going to cheer the patient into getting better. This is how it should be.

So really, I'd like to know if anyone is seriously working along these lines. I don't want to be drawn in to read another "help for the caregiver" story and see a list of tips, website links, and phone numbers.

Guess what...all the people associated with creating these info pages, they probably all get paid. They are classified in "the studies" as Formal Support, as are paid CNAs, aides, doctors, day care centers. Family caregivers are classified as Infomal Support, meaning they do not get paid. And when there is government grants to deal with the issues, the Formal Support people and agencies get monies, while family caregivers do not. They are identied as "not getting paid." This is a cruel and punishing categorization that has to be changed. The next door neighbor who offers to mow the lawn...that is informal support.

JW

1/ 6/12 3:10am

I am one of those unpaid spouse caregivers. I agree with the health problems and financial problems. I had to quit my decent job in order to continue to get state benefits for my spouse and not have a huge liability. Whatever income I make the state takes it as a spendown. We live on approx. 24,000 a year and this is considered high income for two people who pay rent, normal expenses and try to have a vehicle payment. I also no longer have insurance for my increasing health expenses. Unlike the average age of those in the study I am only 51 so I have no income or any benefits available to me. I would love to be a paid caregiver even if it meant only maybe insurance and some small cash assistance or food stamps a month!!! Love your ideas too, but I know in my state(OH) the governor is cutting benefits for those at home with the new cuts to the Passport/Waiver programs. I dont mean to complain, but telling people to care for themselves is easier said than done. Best wishes to caregivers and those affected. Its a long road to go down and I just hope to come out alive and kicking!!!!

sole 24/7 caregver

1/ 6/12 9:16am

I too started to care for Mom in my early fifities .The sisters had let her get into such a bad condition, I thought she had only 3-6 months to live. Nearly ten years later...here she, recovered in many many ways, many great (looking back now) years we had and did many things. However, I could not keep up freelance work, which was deadline dependent. I never knew how much attention mom would require.

I have harped on this caregiver govt support program for a long time in various places. I want to reframe why government SHOULD MUST actually fund the real family caregivers.

Simply our government represents supposedly the whole of the population. And although most do not want to admit it, with any luck, they will be old and fragile and needing assistance also. The current batch of frail seniors and disabled are not some blip that the current youngster taxpayers are burdened with. That is also THEM down the line.

In Martha Stout's excellent book "the Sociopath Next Door," she states a figure that 4% of the population are true sociopaths, without conscience. For the most part these unfeeling people learn to fake it so they can remain part of society, in a marriage, out of jail.

However, if you have read many of these forums, you will find that many beleaguered solo caregivers have brothers and sisters...nieces and nephews (grandchildren of the elder who probably spoiled them as youngsters).  They refuse to help, pretend that "drive by social visits" and signing name to a holiday card is just fine, probably too much.

From my years of reading these forums and reports and complaints, it seems that the sociopath percentage has skyrocketed for this group, the sons and daughters of the elder needing care. Now the percentage of those with glazed over moral values has increased. Now it seems there is a higher percentage of sociopaths...perhaps 60%.

So step back and view map of the USA. I bet that in half the families, there is some solo family caregiver giving their all for one mother/father/grandparent/great grandparent. And ALL those relatives who do NOT step up, big pyramid beneath the few doing all the work.

That big pyramid ...those are taxpayers shunning their "filial duty" to care for their loved ones. And you think they will not need assistance when they age? These deadbeats will require care as well.

Either this country should quickly reculturize itself to embrace full family shared caregiving...or the government (being proxy of the people) should honor and support those relative few who are actually sacrificing so much...time, money, job, social security input and credits, friends.

You know, in most parts, legally, family caregiving is considered a GIFT. An offspring are not legally required to care for their parents. Some states have filial responsiblity laws, and perhaps these need to be beefed up and really enforced or used as basis for more effective laws.

Another "right" of the sole family caregiver could be a more streamlined way to revamp will to be paid a higher percentage of the inheritance, without hiring expensive lawyer, long court battles with siblings, etc.