Beyond the Burnout and GARD--Notes from the AARP November 2021 Webinar nad GARD November 2021

 AARP of California at Institute on Aging presented Beyond the Burnout Hear. They had 3 voices of caregiving speak to the issue of caregiver burnout, including author Patti Davis, Ronald Reagan's daughter, Roy Remer, Zen Caregiving Project's Executive Director, and Lily Liu, a family caregiver.

Notes:
In 2020, 48 million Americans are providing care to someone over the age of 18 (that's 1 in 5 Americans). Our healthcare system is dependent on unpaid family caregivers. And 93% of family caregivers report receiving no training on how to be a caregiver. 

November is Caregiver Month. I'm glad that caregivers are being recognized and given space to talk. But where is the tangible support? And how are things made better for them? There's a lot of talk about how hard caregiving is. How do we address the structural issues that make caregiving so hard? 

"We can lose ourselves in the information and avoid our emotional process," noted Roy Remer.

For Follow Up:

• What models exist for training cargivers? Remember to use https://bpc.caregiver.org/
  
  

 

The Unknowables

Lately I have been aware of my inability to really see and access my clients. Even after a year of weekly one-hour sessions with clients, I know that I do not know them, that I still cannot get to the essence of them. Sometimes I can't even grasp the problems we are navigating. Am I not paying attention? Am I doing this all wrong? Why can I not see them? Are they not showing me? It feels like I'm swimming in deep water, trying to find something to hold on to.  I'm often searching for what is real, what is important, what is the answer, what is the problem.

Luckily, I stumbled upon Irvin Yalom's "Two Smiles" in his 1989 book Love's Executioner.  Have you read any of his books? I can't remember the first book I read of his, nor how I found it. Maybe it was just on the shelf at the library; unfortunately no one recommended his books to me before. It's sad to me that I might have never found them.

Dr. Yalom uses the epilogue of "Two Smiles" to share his thoughts on how we are blocked from the knowing of the other. As he described the futile devices of our language to express our thoughts, feelings, experiences, etc, I felt a wave of relief. "The march, from image to thought to language, is treacherous. Casualties occur..."  He goes on to discuss the problem with accurately receiving information.  "It is wildly improbable that the receiver's image will match the sender's original mental image. Translation error is compounded by bias error." Written by a well-respected psychiatrist in his 50s, these words offered me reassurance that I may not be doing this work wrong. We are all inadequate at being able to see and know the "vast richness and intricacy of each individual experience." It is the unknowable. I will continue to seek and serve each of my clients to the best of my ability every single day, and I will try to embrace of this gray area as a way of recognizing and honoring that each individual's full experience is too vast and rich to ever be fully known.

And I will read more of Dr. Yalom's books. Love's Executioner offered many more lessons--lessons on the importance of the therapeutic relationship, the existential pain we all deal with, and the humanness of the therapist. I'm sure I'll come back to it again and again.

Medicare is only 52 years old!?!

Yesterday I read Alfred Chiplin's "Medicare's Future: Letting the ACA Work, While Learning from the Past." (5/13/12013) He quoted from Paul Starr's history of medicine in the USA which offered some great details on the struggle to get Medicare passed in 1965. Advocates started this debate in 1906. It took 59 years to get Medicare in place, and it was very unpopular with many. It hit me as I read this article that my clients born in 1930 (and who are now 87) were my age when Medicare was put in place. That means they had no idea as a young adult that their old age would be safeguarded by Medicare. Now those same 87-year-olds have a strong sense of entitlement to their Medicare benefits, and we all take for granted this benefit is a guarantee for us if we reach 65. I can't believe how young Medicare is. I can't believe that many of my clients did not know about Medicare when they were the age I am now. This realization has stunned me, and it has also led me feel excited and optimistic about the changes that can come. I lack the vision to see what could be, but I read enough of what others are envisioning to know that tons of smart people have some great ideas. Recently I have done some research on how individuals and organizations have effectuated great change over the decades. It starts small with a strong collaboration. I wonder what change is in store for us.

Aging in Place--I'm just not paying enough attention...

Today at the YMCA, I overheard two older women talking about a BuzzFeed article on Aging in Place. The article talked about having a community center that allowed the local residents to age in place. They were talking about the need for such a resource in their neighborhood (Candler Park). I know so much about the Metro Atlanta aging services, yet I could not think of how our current services and supports could seamlessly coordinate an effort like this for one neighborhood. I must not be paying enough attention. There must be models, ideas and organizations (NAIPC, NORC?) ready to take on such a community. The National office for the NAIPC is creating an aging in place center in conjunction with StonyBrook University in New York. Maybe a model like that? Maybe a model like the Toco Hills NORC? These ideas seemed so hypothetical to me until this overheard conversation today. Why? The need is there, yet I've only been in practice with individuals facing advanced and terminal illnesses. There is a huge gap in my knowledge, and I feel so motivated to open my eyes and learn more about caring for those just entering the aging process.

As my mind pondered the needs of a small community like Candler Park, I pictured a small team of skilled providers making house checks, errand-runs, doctor coordinations, etc., sort of like a geriatric care manager and house manager shared by several (maybe 12?) households. How would that be funded? How do you define the scope of services? Must be like a NORC... So much to learn.

Caring for Your Mom at Home

A woman from my hometown recently sent me an email with this question:

My mom is now living with us and someone said you might be able to tell me the names of some books to read.  She is having trouble remembering things, things that happened just a day ago. It is not just once in a while, it is all the time. She can't remember her grandson's names...it is killing me to see her this way.  Everyone tells me to just agree with her and don't tell her any different....but you know me, I need to tell her the right thing. Like if she says....he gave me the two pairs of slippers....I will say, No, Mom, he gave you the blue ones and the pink ones are from me. I want her to try and remember and by telling her, she says oh, yes, I remember. Am I wrong?


So, your mom is living with you now. That is quite an adjustment, but I'm glad she's in a loving home with family. Sounds like she is having some short-term memory problems, or dementia, and this could be caused by a lot of different things. To learn more about dementia, I recommend the 36 Hour Day. It's a great book for families facing dementia for the first time.

Most folks in the elder care world do suggest "meeting a person where he/she is," in other words, just go along with them and with whatever they believe as long as they are not harming themselves or others. Since your mom will likely not be able to recover the ability to remember events or people, correcting her will only make her feel bad and ashamed, or get agitated. So, you just smile and nod when she says that the cows are in the front yard eating blue hay. This can be difficult and very trying for family members, especially when you are living with it 24/7, so I recommend getting support from others. The Alzheimer's Association has some great recommendations on their website www.alz.org including a list of support groups that meet monthly. I strongly recommend connecting with others that are going through this; their insight and experience will be invaluable.

The other book I would recommend is the AARP's Caring for Your Parents.  And here is a blog that I really enjoy http://newoldage.blogs.nytimes.com/

I hope some of this helps.  Caring for a loved one at home can be difficult. Finding support from others will be helpful as you make this journey. 

Raising the Eligibilty Age for Medicare and SS?

I just caught wind of this discussion, and I'm afraid this could become a reality.

The CBO just released its "research" that supports raising the Medicare and SS eligibility age:
www.cbo.gov/ftpdocs/125xx/doc12531/01-10-2012-Medicare_SS_EligibilityAgesBrief.pdf

The report indicates that more people will have to work longer--did they realize it's especially hard for those in their 60s to find jobs? (see: www.pewtrusts.org/uploadedFiles/wwwpewtrustsorg/Reports/Fiscal_Analysis/Long-term-unemployment-addendum-November-2011.pdf) 

The report claimed that about 5% of those using Medicare would be uninsured but that most would get insurance from the private sector (Really--who's underwriting folks in their 60s and offering affordable premiums? The ACA has charged states with creating health insurance exchanges, but those are being challenged and states like Georgia are sitting on their hands waiting for it to be repealed: http://www.ajc.com/news/georgia-politics-elections/waiting-game-may-cost-1291709.html ) or from their spouse's employers (sorry same-sex couples, entrepreneurs, and single/widowed folks).  Here is a quote from the report:

CBO assumed that people who became ineligible for Medicare under the new age limits could purchase health insurance through the exchanges, and, depending on their income, might qualify for federal subsidies. CBO also assumed that people with the lowest income would qualify for Medicaid benefits. Without those changes to the recently enacted health care laws, CBO anticipates many more people would become uninsured if the MEA was raised.

Compare that to Robert Reich's thoughts (found at http://robertreich.org/post/7941066493):

So what’s the answer? For starters, allow anyone at any age to join Medicare. Medicare’s administrative costs are in the range of 3 percent. That’s well below the 5 to 10 percent costs borne by large companies that self-insure. It’s even further below the administrative costs of companies in the small-group market (amounting to 25 to 27 percent of premiums). And it’s way, way lower than the administrative costs of individual insurance (40 percent). It’s even far below the 11 percent costs of private plans under Medicare Advantage, the current private-insurance option under Medicare.

In addition, allow Medicare – and its poor cousin Medicaid – to use their huge bargaining leverage to negotiate lower rates with hospitals, doctors, and pharmaceutical companies. This would help move health care from a fee-for-the-most-costly-service system into one designed to get the highest-quality outcomes most cheaply.

Estimates of how much would be saved by extending Medicare to cover the entire population range from $58 billion to $400 billion a year. More Americans would get quality health care, and the long-term budget crisis would be sharply reduced.

I really hope the President and Congress take a harder look at their proposals. Perhaps we could save money by allowing them to get health insurance from their spouses or purchasing it in the private market?

Thanks for listening to my rant. I'd love to hear your thoughts.

Medicare's Mental Health Coverage

A number of my clients depend on the expertise of geriatric psychiatrists to appropriately address depression, anxiety, or agitation associated with dementia.  They see their doctors and counselors/social workers in inpatient as well as outpatient settings.  How are these services paid for?  Traditional Medicare, like most health insurance plans, provides mental health benefits (Medicare Advantage plans may provide different coverage). The coverage differs, though, for inpatient and outpatient services.

If a Medicare beneficiary receives inpatient services in a psychiatric hospital (i.e., Peachford Hospital or Ridgeview Institute in the Atlanta area), they have the same deductibles and co-pays as for general hospitals.  The big difference, however, is that Medicare beneficiaries have a 190-day lifetime max for inpatient services in a psychiatry hospital.  Beneficiaries can also seek mental health services at a psychiatric unit within acute care hospitals (i.e., Emory's Wesley Woods or Eastside Heritage).  Here is the list of deductibles and co-pays for hospital coverage:

Hospital deductible: $1,156 (waived if the beneficiary is admitted to a psychiatric hospital within 60 days of being discharged from a different hospital) 
Hospital co-pay for days 61-90: $289/day
Hospital co-pay for days 90-150: $578/day

As for outpatient coverage, Medicare will pay 80% of the initial visit to a licensed psychiatrist to determine diagnosis; this is similar to the payments made to other doctors.  Currently, however, the visits made to mental health professionals (e.g., general practitioners, nurse practitioners, physician assistants, psychiatrists, clinical psychologists, clinical social workers and/ or clinical nurse specialists) after that initial visit, is covered by Medicare at 60%, leaving the beneficiary (or their Medigap plan) covering the other 40% of the services.  This coverage will change in the coming years; in an attempt to create mental-health parity, Medicare will cover 65% in 2013 and then 80% for 2014 and beyond. 

For more information, visit www.medicare.gov