20220527 Elder care

Friends have asked for guidance around aging parents. Here are some of my thoughts as a caregiver.

Engage and encourage elder(s) in as much physical and mental activity as they can enjoy/tolerate. Of course everyone needs rest, but it's astonishing how quickly abilities degrade without use.

There is a gap between operating independently and ran out of money and needs daily medical care (when federal/state benefits kick in for a skilled nursing facility). Some people decline so rapidly there isn't much between, but most decline gradually—in which case the gap expands to a chasm.

If elder or family has a lot of money, professional help or residence can bridge that chasm. The premium professional solution is a CCRC (continuing care retirement community) sometimes known as LPC (life plan community) that provides as needs progress (residential living, assisted living, memory care if appropriate, skilled nursing, hospice).

Otherwise—and more typically—the needs must be addressed by family, friends, and community services. This can be, simultaneously, a loving decision to keep your elder(s) close as well as the only viable financial option.

Here is the conversation to have with your elder(s) early and often: how to escalate the level of care given available resources? Age-in-place in their current home with specific help? Get a roommate and care for each other? Move closer to family? Move in with family? Move to basic retirement community or full-blown CCRC? Who will take them to appointments and run their errands when they can no longer drive? Manage the endless medical administrivia? Plot multiple scenarios far enough to check feasibility and emotional fit.

If decline is gradual, it's hard to decide when to transition to a higher level of support. It will be a Quandary in that there isn't one correct answer on how to balance resources, agency, safety, and quality of life (for elder and caregivers). That's why it's good to remain open to various scenarios.

Generic lists of signs to watch for aren't as useful as knowing your elder's historic and current patterns, and spending enough time with them that you can notice changes and watch how they play out. Some changes may seem alarming, but brains are amazingly plastic and can often compensate for deficits.

Understand that your elder bringing up a concern isn't necessarily a request for direct help. They might just be looking for reassurance, or to talk it through—likely multiple times—until they decide what they want to do about it.

It's tempting to leap in to help, but wait until they explicitly ask for assistance/guidance or the situation becomes unsafe. If they prompt you instead of you grabbing control, you're less likely to fight about it then or later.

It's common for an elder to gradually regress emotionally, and tempting to treat them like a child. But they are still full of wisdom and not a child. Make things as simple as necessary for their ability to navigate, but no simpler.

Listen to elder. Even if there is advancing dementia, they still know more about themselves and what they need than you think.

Have them retain as much responsibility as they can handle (e.g., managing their own activities, food, meds).

In other words, encourage as much confidence and autonomy as possible for their current level of ability. This is sometimes frustrating as you watch or hear them struggle to complete a task. Take a deep breath and let them do the best they can. It doesn't have to be perfect.

Sometimes the situation will call for an action or change your elder doesn't want. Be gentle and give them plenty of time to mentally/emotionally process. They are their own person and you should respect their agency—even if it might shorten their life (e.g., refusing a medical procedure). Once you begin overriding their resolve, you're on a slippery slope to codependence and loss of dignity. Of course, if their behavior endangers others (e.g., no longer fit to drive, sets kitchen on fire more than once) then specific shifts are mandatory, obviously.

Strongly prefer non-profit orgs over for-profit companies. The former typically provide higher quality care than the latter whether it's medicine, residential facilities, or in-home help.

Besides the personal care activities, being an advocate in the medical/insurance complex amounts to another part time job. Allow for that. Keep complete notes. If you are unable to engage a gerontologist to manage your elder's overall health plan and be alert for interactions between meds/treatments, congratulations! You are now their gerontologist.

Involve all the children of elder (if none, then grandchildren or siblings). Everyone needs to agree on, or at least be clear on, their roles and responsibilities.

Take care of the caregivers whether family, friends, or hired. Give them breaks and resources. (Yes, this includes you. Especially you.)

Most of the aging/caregiving links I have are for California, but here are few that are more general:

https://www.caregiver.org/
https://www.caregivercenter.org/
https://eldercare.acl.gov/Public/Index.aspx
https://www.medicare.gov/care-compare/

Bonus section: preparing for incapacitation or death

As hard as it is to face, once the plans are in place you will breath easier.

Review current legal docs if they exist: advanced health care directive, power of attorney, last will and testament. These are the minimum three. You can fill out templates, but those are suitable only for simple cases. If something doesn't seem right, or there is likely to be contention, hire a family or estate attorney.

To bypass court/fees/delay, set asset beneficiaries/titles either to individuals POD (payable on death) or to a living trust. The latter is good if POD would not divide assets suitably or there are management complications like sub trusts. If a living trust seems appropriate, hire an estate attorney to draw it up properly. (Btw, transferring real estate property into a trust must be done a certain way to avoid triggering property tax re-assessment).

People who are first and second in line as executors of the above docs need the following so they can fulfill their responsibilities if elder becomes incapacitated or otherwise unable to successfully manage their own finances and medical processes:

Photograph front and back of every card in wallet (obscuring bank/credit card numbers, obvs) for emergencies and so you know what to replace if lost. Review/update periodically.

With their permission, flip through your elder's paperwork/files of last few years to get a better sense of the overall financial and medical situation not already verbally conveyed to you. There will likely be stuff you didn't know, fodder for more discussion. Take note of all types of accounts.

Obtain numbers and contact info for all those financial and medical accounts: bank, investment, retirement, social security, insurance. Review the beneficiaries. If there is a living trust, most likely that trust should be the beneficiary. If not, adjust as necessary to honor the will. Review/update annually.

If agreed by elder, especially as they need frequent help, get login credentials to above accounts as well as devices (phone, pad, computer).