The Child Becomes The Parent

You’re a parent, but you’re also a son or daughter and the question your family is dealing with, or may deal with, is what do we do about mom (or dad)?

In our poll of 310 parents, this much is clear – mom or dad won’t be living with us (or we don’t think they will), and those with kids still in primary school and college bills ahead believe mom or dad may have to remain independent. Others tend to see Assisted Living in some form as the likely option and, interestingly, those who don’t work in the healthcare field–as much as they abhor the notion of a nursing home for mom or dad–still believe that is the likely end of life residence, despite efforts afoot throughout the U.S. healthcare system to change that. That’s interesting.

Slide1This poll tells me a few things. One obvious being that a lot of us have our own lives and taking care of mom or dad would disrupt that, or that mom or dad don’t want to live with us, or both. They would rather be alone – or so they say. I did this poll because I thought it was an interesting question about our attitudes but part of me thinks I asked the wrong question, that where mom or dad live is far less the issue than how.

* * *

The mom was 77 but acted like she was 94. She had a Cadillac Medicare Advantage plan in Massachusetts, occasionally seeing her doctor for bizarre rashes. Her PCP prescribed various creams, never once getting to the bottom of the rashes – sedentary life, lack of H2O, depression. Mom, who was a widow in 1998, had waves of reliance on Chardonnay and had isolated herself over time from family and friends. She never saw a therapist or grief counselor back then. Her memory seemed to come and go but it always just seemed like general forgetfulness, and by early 2015 she was forgetting to eat and drink fluids or take her pills for cholesterol. Dehydration, all too common in the frail elderly Medicare population, led to a fall and 3 week stay in inpatient rehab. Rather than go home alone, mom was moved to the daughter’s house for round-the-clock care and preparation for life after the fall. Things had to change for the mom. The daughter included her in a volunteer teaching role for 2 hours a week – almost as a tutor rather than lead teacher – the son-in-law walked with her daily, the grandkids read with her, and the home health OTs helped her with exercises to improve range of motion in her partially broken shoulder. Visits to a psychotherapist revealed significant unresolved issues in the wake of her husband’s passing 17 years ago. All of these changes seemed to be valuable ways to help mom improve her quality of life. Memory continued to be a clear challenge to independence, however – as mom would never remember to eat or take pills or lacked awareness about why she was moved to Connecticut, and for how long she was there. ‘That was a nice visit to the hospital – I was there for 1 night, right’?

A new PCP wasn’t accepting new Medicare patients but did a favor for the daughter and ‘guessed’ that an anti-depressant may address the forgetfulness, but meantime ordered testing to address possibility of dementia or Alzheimer’s. Home health aides from the local hospital system also conducted regular tests during visits. Results were unclear initially and then, suddenly, after 7 weeks at the daughter’s, the mom resorted to isolating behavior again and asked to go back home. Signs were all too obvious: anger, agitation, non-communication, apathy.

There was a support system back home – but not within mom’s 4 walls. Once back home, the mom was switched back to her Medicare Advantage plan and found a new PCP, who promptly declared that mom was healthy – that she didn’t need the anti-depressant, had no memory issues, and should check in in 6 months. These health plans today are taking great strides to incent physicians to ask more questions and get more involved, but this one did not. Mom’s local family didn’t engage her in activities or social support and instead opted for getting mom weekly visits from a home health aide – not paid for by her health plan. The aide cleaned mom’s home and the mom began to refer to her as the cleaning lady. Three months later now and the mom, perhaps without realizing, had generally cut off contact with the family that had taken her in after the rehab. She resorted to Chardonnay again and random visits to the mall and other towns in her care, without communicating her whereabouts. She was driving – an important element of independence for 77-year-olds – but was not fully aware of where she was going. She once said she drove to Maine and when she got there had to go to the bathroom, then turned around and came home, not sure why she went to begin with.

Depression in the elderly is going to be a bigger problem than we realize. Check that, it is going to be one of the largest costs to the healthcare system and ultimately to society. Sons and daughters leave their own families for weeks to care for mom or dad, juggle work, struggle with the failures of mom or dad’s care plan or lack of one. Maybe we all do realize the problem but just don’t know how to address it.  I hear great stories of health plans paying doctors bonuses for helping to diagnose patients and spend more time with patients, but I’m unsure if the real underlying psychosocial issues are being addressed. I talked to a doctor who works for a Medicare Advantage health insurance plan who said she believes in therapy services and home care for patients like this, but has herself struggled with what to do about her own dad who’s alone, aging, depressed and has had two hospital visits since January.

Caregivers, like the daughter, face their own depression – sleepless nights, lack of exercise, anxiety – they all develop as we see mom and dad age and fall and fail to embrace life the way we think they should. For all the advances in sharing information with doctors and paying doctors bonuses to ask about a patient’s health and write down the information, I still believe there will be a gap and unresolved problems if the patient’s family isn’t represented in the room. The patient may not share their full history, or be willing to, or remember. Expect more falls and rehab stays and discharges and then more falls. Sad cycle.

Unless….

I believe the role of personal care aides or volunteers or PCPs turned Dr. Bakers or something will become vitally crucial in behavioral health for elderly over the next 5 years. There’s value in some model to deliver support but that support has to take into account the entire family, not just the mom or dad. Expect greater attention in the future on whether aides going into the home are really equipped to diagnose and solve issues. Further, what sorts of criteria will Medicare insurance plans implement to ensure these aides are adequately trained in assessing, recognizing and managing things like depression and anxiety, and fall risk. Apparent to me and my family is just how disconnected the physicians are from the patient and how much the IT advances like electronic medical records – while helpful to the home care providers – aren’t really going to change behaviors. Patients with significant psychosocial challenges or events – like the passing of a spouse at a young age – don’t need a PCP to give them a cream for their rash or a piece of paper with a care plan. They need a human being to support them. They need the PCP to ask questions and advise, and to work ‘with’ the family. Sons and daughters need to accompany mom or dad to visits with the PCP, otherwise I’m afraid decisions will be made without the full story, scripts will be changed, referrals will be made but without the right people involved.

There was a swift decision to move the mom off her blood pressure medication after she was determined to be orthostatic, but unfortunately discussion about the true reason for the falls was limited. Sadly, to have a new PCP dismiss the real reason for the falls was not surprising. A good friend and physician, Michael Yanuck, has told me time and again that ‘these cases are unfortunately far too common’.

So….is there a way to make them less common? Some health insurance plans are trying to assess risk by incenting doctors and others are trying – mostly unsuccessfully – to directly reimburse sons and daughters and other caregivers for helping elderly mom or dad (rather than using home care workers). I like the idea, frankly, because family–despite the inherit flaws in this system–are closer to mom and dad’s situation and history, rather than a home health aide who becomes a defacto cleaning person. Kids with an elderly parent need to get ahead of such issues by getting support from clinicians but working to drive decisions, being willing to utilize therapists, going to therapy sessions together, and finding healthcare services that focus largely on diagnosing the true reason for things like falls and dehydration.

Note: This essay is part of an ongoing series for families.

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