The Reality of 24/7 Home Care of a Loved One With Alzheimer’s: The Family Caregivers who are front line soldiers doing all the work, are seen by government as only ‘informal support…’

November 24, 2010 · Posted in The Capitol · Comment 

During this holiday, we can be thankful for those who labor 24/7 to care for our elderly and our broken mind ones. This is a Guest Contributor on The Reality of 24/7 Home Care of a Loved One With Alzheimer’s: The Family Caregivers who are front line soldiers doing all the work, are seen by government as only ‘informal support…’

by Carol Wright
Far from the purple banners of the recent “Alzheimer’s awareness” events sit an estimated 6.6 million family caregivers for an estimated 5.5 Alzheimer’s sufferers (nobody really knows the exact figures for either group.) Compare that with 300 million people in the US total +/-. It’s a lot of disabled people, a lot of caregivers who cannot work outside the home while caregiving in the home.

Some of these caregivers include supportive extended family, but all too many caregivers are toiling alone and unpaid, caring for a frail senior suffering from dementia. This often means, an aging woman caring for her elderly parents, a senior spouse struggling to keep their loved one home, out of the nursing home just one more month.

The recent “Shriver Report: A Woman’s Nation Takes on Alzheimer’s,” emphasizes that it’s the women who overwhelmingly take on caregiving duties.

But some light should fall in the corners too: More than a few families have forsaken their own. Often just a single brave, compassionate soul steps forward for that end of life walk with the afflicted one. Their other relatives, their own children, their own sisters, brothers, former friends, even spouses, turn away or come around only once in a very long while for a very few minutes.

“Informal support.” This is what we 24/7 caregivers are most recently called by government and parroted by media, we who tend to our loved ones day in and day out.

“Informal.” Inferring not serious work, when in fact each day caring at home for an Alzheimer’s patient is deadly serious work of lifting, hauling, hefting, guiding, feeding, issues of urine, feces, medicine, cooking, cleaning, bathing, laundry and so much more.

Sole caregivers are especially brutalized by this burden, and they catch the flack, the very bulldozing brunt impact of frontline dementia care. The hours can be 24 on and zero off. Days are seven on and on and on.

Perhaps a neighbor comes for a few hours to seniorsit so the caregiver can get a break that is not a break. It’s scramble to shop for groceries, medicines. To rake up the leaves so the grass doesn’t die. Take dying cat to the vet and have put to sleep. Get back before patience of friend wears thin, or person with dementia gets out of control. Hope for no sudden feces situation, or friend will not return again.

“Informal support.” Caregiverscannot snag a full night’s sleep. Often their charges are up half the night, pulling out drawers and emptying on the floor. There is assistance needed always with trips to the commode and changing protective pads on the bed. Start first load of laundry for the day at 3 am. In our house, my mother wakes up screaming about something “out there…out THERE!…oh gawd gawd!” Last night it was a fire she saw, which was really a shiny birthday hat. I spent hours extinguishing a birthday hat, reassuring my mother, and even after removing such and other items from environs, my mother continues to no longer be able to tell the real from the imagined.

“Informal support.” Communicating with someone who has dementia is often like herding cats, and one has to, in order to help with the most simple actions, give repetitive instructions for every phase of aid. “Put foot through here, no through …. the pant leg…this here. Put your foot through here. Your FOOT. Point your TOE, now foot…”

“Informal support.” Often the day comes when the outbursts need more meds (some will say). This happened to my mother. She had unexplained nausea after a fall, and I took her for many tests in the ER. No answers, and not better. Finally a four-day stay in the hospital. She had a few delusional/puzzled episodes while there, and she pushed away prodding, hurtful hands. She was labeled “combative; they said, We’ll try Seroquel.”

Two months later, my mother slumped to the side her chair so much I had to tie her in to keep her from falling. I stood guard so she wouldn’t be hurt while she thrashed in bed, now padded everywhere. Sometimes she stiffened, slid from her chair like a 2×6 board. Now on the floor, face contorted, tongue choking, eyes rolling.

I see a Seroquel TV ad with voice-over droning “Not for use by elderly dementia patients.” I see Mom writhing on floor. Is this advancing Alzheimer’s demanding a larger dose or ?? Who will tell us? I plead. Doctors don’t know. Or different docs give different answers. I research online. So many of the bad side effects -she has them! Her doctors have made my mother straightjacket insane. We stop the Seroquel, but Mom is switched then to Ativan to stop paranoia. The Ativan leads to chilling paranoia as Mom channels cold eyes up from the DeadZone.

“Informal support.” Each family caregiver is front line to strong daily challenges like these, often complicated by illnesses anyone might come down with. Deafness and dementia. Leukemia and diabetes…and dementia. Colon cancer…and dementia. Congested nasal passages and dementia.
“Informal support.” Caregivers carry the brunt of the work at great personal sacrifice on every level, their health and dental go downhill, they are not able to earn income, a certain amount of sanity that one has charge of one’s own life goes out the window. A social life; there is none. An eroded future occurs because a dedicated caregiver has no idea when this vigil might draw to a close, and can only plan to remain in situ.

For caregivers, there is little outside direct assistance available. We’re not even in the system noted as having a need. No cash grants, no benefits, no medical or dental coverage for us in any quarter; there are no unemployment checks. Some benefits overshoot the caregiver; the patient is qualified (vets qualify for some home caregiving hours) but payments go to licensed caregivers only, not to family members. Government sees the home caregiver as a resource until worn out, then tossed aside when parent dies or is placed in a nursing home. The governments, state, local, federal…the corporations… call it “informal support.”
I cannot quite tell you what it is like to be surrounded on almost all sides by government ‘officials,’ people who say do this or that with what meagher resources are left to us, medical personnel of many different and often opposing ideas, deadbeat relatives, drug companies… too often many wear a smug face of impunity. Something goes wrong, say a bad drug reaction, or financial abuse by a government employee who is supposed to have squeaky clean and timely oversight… it is only the sole caregiver who is cornered, totally responsible for others’ errors, lateness, underperformance. It’s the caretaker who has to scrounge, beg, step up threadbare. Everyone else walks free.

The Shriver Report and Alzheimer’s Association step up their action plans. I poked around the Alzheimer’s Association website to see if there was a hint of direct aid to family caregivers. In the report at http://www.alz.org/documents/national/World_Alzheimer_Report_2010_Summary%281%29.pdf
I read the summary report and recommendations. There I could finally see myself. Twice was I, the unpaid family caregiver, mentioned as “informal support.” Unpaid family caregiver. Excuse me, INFORMAL?? Recommendations to help us, even informally? There was nothing written to help us. Nothing. Big report, but nothing’s changed. Things are stable and predictable according to report writers. No support will be given to ‘informal support’ that is, human beings who nearly single-handedly are giving all they’ve got, now, again or it seems ever.
I wondered: Was this moniker “informal support” commonly used in studies, theses, and legislation. I Googled the term, and found this to be true. Basically, it means our caregiving is a “contribution.” Not a life and death necessity to keep a loved one as safe as possible, clean and fed and helped in whatever way we can… and without leave.
And as Maria Shriver points out in “The Shriver Report: A Woman’s Nation Takes on Alzheimer’s,” three-fifths of the US caregivers are women. “The truth is,” she writes, “it’s women who are the ones who generally do the hands-on grunt work of caregiving—cleaning their parents or spouses and changing their diapers, feeding them, babysitting them, dispensing medicine to them. While men do represent about a third of family caregivers, they tend to arrange or supervise outside services.”

http://www.shriverreport.com/shriver.html

The time is now for direct support for the family caregiver.
Researching the cause and treatments for Alzheimer’s or other diseases tends to draw the most attention and official funding.
But please, it is now time to actively support the real FORMAL caregivers on the front lines of eldercare, the family caregiver. Caregivers need assistance with respite care (typically the only aid offered), and though there is now some protection for caregivers to some day, perhaps, return to a job they may have left to take on caregiving duties… that assumes a short duration and no pay throughout. But, Alzheimers disease, is not a killer like cancer per se. It is a disorder that makes a person eventually as helpless to care for themselves as a new born infant, though often combative as well but with the body of an adult. And a person with dementia and no other illness can live to be in their nineties, as my mother is presently, and beyond.
What about people like me with so far over eight years sacrificed of sole caregiving? We need help with medical and dental, and with reentry into the work force.
I suggest a few simple approaches to help the formal family caregiver continue in their important duties and caregiving. One idea is to give the family caregiver payments in a “like amount” in a kind of disability pay. If their loved one is fully disabled from dementia, then the caregiver is also “disabled from being able to earn a living”—which is so true—anyone who has ever cared for a person with dementia, in home, knows one has to stop even a home business, for the loved one needs constant aid and supervision.
Another solution is to make the family caregiver eligible for welfare, full Medicare and Social Security benefits while care giving. If the caregiver returns to the workforce, then benefits are stopped until normally eligible at x age. This kind of approach does not add a whole layer of bureaucracy, no new programs; it just extends eligibility to a new level, to a new recipient.
But, how to replace the phrase “informal support” that so covers over the often desperate reality? I note a visible name change in the daily news is the change from “illegal alien” to “undocumented immigrant.” However, the immigrant issue is always hot news, where family caregiver headlines (until last month’s of Maria Shriver’s media appearances) are nonexistent. The term “Informal support” generally shows up in studies, scholarly theses, and reports; and these reports and studies are often the basis for legislation and grant requests, and carry the profound bias of naming THE essential caregiver as some seeming ‘nice but not necessary’ support. But what an impact this diminuizing term has had on the real front line for PFCG? That’s me, primary female caregiver.)
My next article will deal with what is called the Beers Criteria, a list of medications and protocols for weaning elderly patients off some of their prescription drugs. This drug free approach has resulted in a dramatic improvement in my mother’s mental and physical condition for periods of time. Three months ago, she was slumped over and headed for hospice. Most recently, she is attentively watching a DVD about a Cuban jazz musician while reading “National Enquirer.” This past week, we had to go to the ER, however. It is as they say, a roller coaster ride, of needs and aid to the one who has Alzheimers. It does not have an ending point.
_____________
Guest columnist Carol Wright was 54 when she left her home where she’d lived for the past eighteen years, to travel across three states to care for her mother in her final few months of life. That was 8.5 years ago. Carol has been primary, sole caregiver for her mother all this time, and has had some respite caregiver assistance only for the past year. She recently was honored as Caregiver of the Month by the Caregiver’s Voice here.

You can read and see more about her caregiving experience at her blogs here and here, and at and at YouTube

The Shriver Report’s book, written with the Alzheimer’s Association, is titled “A Woman’s Nation Takes on Alzheimer’s”; it is available in ebook format for $ 9.99. You can read excerpts here.
Government report from 1998 showing expectation that women shoulder the burden and take on the sacrifices of eldercare, and that their growing preference to stay in the workplace will rock the boat. Basically, the government assumes women will/should contribute this service, and their choice to now stay at their careers is a troublesome trend. Read more here.
There are a few programs to help pay family caregivers, and resources will vary from state to state. Read this article from the Alzheimer’s Association website.


The Moderate Voice

9/11 Victims’ Families Group: Sept. 11 Mosque Protests ‘Disrespect The Memories Of Our Loved Ones’

August 31, 2010 · Posted in The Capitol · Comment 

protest3 One of the chief arguments critics have employed against the construction of the proposed Islamic center near Ground Zero in New York is that the center would be “insensitive” to the families of the victims of the 9/11 terror attacks. “[T]he overriding concern should be the sensitivities of the families of the victims,” wrote Abe Foxman of the Anti-Defamation League, who surprised many by coming out against the Islamic center. “The question here is a question of sensitivity, people’s feelings,” said former New York City mayor Rudy Giuliani. Some 9/11 families “are crying over this,” he added.

But now a “key” 9/11 victims’ families group is breaking with the mosque opposition movement, demanding that an anti-mosque protest planned for September 11th be rescheduled, “and, if it isn’t, that participants back out.” In an email to members reposted by Politico, Dennis McKeon (who started the group Where to Turn as a clearinghouse of information about the attacks and subsequent plans to redevelop Ground Zero) wrote that any protests planned for the ninth anniversary of the attacks “disrespect the memories of our loved ones on this sacred day at this sacred site”:

As most of you probably know there is a proposed protest rally against the mosque being planned for 9/11. There are also reports that there is a pro mosque rally in the works for 9/11 as well. … We have always stood against any rallies scheduled for September 11th and we will do so again with these events.

We will be joining other 9/11 organizations in asking that the organizers change the date for these events. If they refuse to change the date we will also ask those scheduled to appear to withdraw from the events.

Over the past 9 years more and more of what’s been going on at Ground Zero has excluded the families. …
We will never support such activities that disrespect the memories of our loved ones on this sacred day at this sacred site.

Indeed, while conservative critics have attempted to co-opt the families of the 9/11 victims for political purposes, painting them as monolithically opposed to the proposed community center, in reality, their opinions are split, much like those of other New Yorkers.

The September 11th protest is to be the biggest yet, featuring former U.N. ambassador John Bolton, right-wing media tycoon Andrew Breitbart, and Dutch Parliamentarian Geert Wilders, a proud hater of Islam. Former House Speaker Newt Gingrich was scheduled to deliver a video address, but canceled under mysterious circumstances. The protest is being organized by anti-mosque crusader Pamela Geller, who has organized other demonstrations against the proposed center, and uses her blog Atlas Shurgs to pump out new smears against the project’s organizers every day.

Think Progress

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