AlzCaregiver Asked December 2009
Where is direct aid to family caregivers?
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What would you like to see, what makes sense, for govt aid directly to burdened caregivers? I see legislation for assisting the elderly/patient directly, but nothing to assist family caregivers directly. There is one state in the NE that pays family caregivers $45 day; this keeps people out of expensive nursing homes.
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I fall through every assistance crack there is. Been sole caregiver for mother with Alz for 7.5 years. Lots of times, it's 24/7 literally. At the beginning, I tried to work in some freelance work, and certainly there are "down hours" where computer graphics work is possible, but overall, demands and emergencies made me an unreliable worker for a field that demands meeting deadlines.
So, legislation, including one that is making its way through congress, helps Alzheimer's caregivers by giving us opportunities for more training, hey, so we can care better and longer. I think it provides for more day centers, etc. This is touted to help the Alzheimer's Caregiver. Also read with hope recent studies that show how stressful it is to be a family caregiver. REALLY, they needed a STUDY for that? Then there's no offer of help. That's like recognizing how bad starvation is in Somalia and sending no food.
So these are some suggestions of easy-quick to implement ways to financially assist the family caregiver. Assuming there will always be sticky requirements to qualify...how long at it? how much assistance? fraud checks, etc.
1. Fully, perhaps temporarily, make caregiver eligible for full Social Security draw at whichever rate is higher, the parents' SS amount or one's own. Make caregiver immediately eligible for Medicare, regardless of age.
2. One psychologist said that family caregivers should be Dx'd with a caregiver disorder, depending on symptoms. Stress, depression, etc. Then they'd qualify for disability. For pete's sake. Some of us are more resilient than others, but that gave me the idea, that we are disabled by proximity, being stuck sometimes 24/7, limited by the disability of our charge. That way, WE collect disability, without any stigma of being declared nuts ourselves.
2. Pay a per diem amount for just care, more if offering own home and resources to care for parent.
3. Create a fund to be collected upon death or ceasing of care, a startup fund.
4. Create a Caregiver Assistance dept somewhere in government to look after RIGHTS of caregivers (like let's even get some rights in the first place) to assist with deadbeat siblings, accusations by parents, respite care, etc. They would also assess the situation to make sure you are actually caregiving and not just collecting $$. Did anyone see Precious, where the evil mother had her granddaughter come over for just the interview with the social worker? She was on best behavior for ten minutes, then threw the kid aside when the interviewer left.
These are a few ideas, but even upping the date to collect social security and be eligible for Medicare would be a tremendous help...for us younger ones, anyway. That would be easiest and quickest to implement.
Interesting that you should bring up this issue...I was so tired one evening; thinking about all that caregivers do that cannot always be put into "dollars and cents," so I wrote to the President:
Dear President Obama,
I write to you respectfully to ask that you reconsider policy changes that will negatively impact the well-being of senior citizens and their caregivers.
Like many women my age, I take care of my 82 year-old mother. I work and care for her fulltime. Even though her income is below the poverty level, she makes too much to qualify for most government programs and, therefore, must rely on me for her care. Only someone who has tended to an infirm, elderly parent knows how utterly exhausting and taxing the daily grind can be. Every spare moment is focused on doctor's appointments, hospital visits, and figuring out how to pay for everything.
Many of my fellow caregivers are living in far more dire circumstances. Their parents have Alzheimer's, and other debilitating illnesses. They are caring for ailing parents, adult children, and even young grandchildren under the same roof. Many seniors are forced out of their homes. Elderly couples are told to divorce one another just to receive more benefits. Shameful.
The burden of care can no longer be placed on the shoulders of the caregiver. We are a quiet army of caring individuals who take on this responsibility because we love our parents and, frankly, there is no one else who will help. However, we are exhausted and need financial, spiritual, and emotional respite.
My mother would choose to live in her own home. The current system has all but negated her wishes. If she could have in-home help, that would help us as well as reduce the burden on hospitals and care facilities.
You seem like compassionate person who will listen to his constituents. Can we not find other ways to fund care for seniors? Should we scale back our military involvement in other countries and focus on American citizens at home; many of whom have given the better part of their lives shaping and building the country we live in today? Could we provide fulltime caregivers a tax credit, stipend, or voucher for the work that we now perform gratis? I fear that in our youth-fixated culture we have all but forgotten the members of our "greatest generation" as well as those who will follow. However, we are all citizens and we demand a change.
Please consider the needs of those who do not have all the advantages that most people take for granted. We are losing hope.
Thank you.
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Note: if you would like your voice to be heard too, here is the website: http://www.whitehouse.gov/contact
https://www.agingcare.com/articles/how-to-get-paid-for-being-a-caregiver-135476.htm