Caring For Our Parents

Like many people of my age, I am in the midst of living with my new reality of trying to assist a parent who is increasingly unable to manage life’s daily routines on their own. The experience has brought me through the utterly awful systems we have to take care of our elders — hopefully some of the lessons I have learned will help others facing similar circumstances.

Facing The Hard Questions Now

What I have taken from this experience (aside from the many lessons learned about the challenges of aging) is the immediate need to reevaluate my own plans and preparation for the day when I will need this system too. It is difficult to imagine oneself unable to move or perhaps unable to understand the world around you — for this reason, I think many of us put off the hard questions about what we want in these situations. But not facing the scariness head on now risks living the scariness later in ways we would never want.

Below are the issues I now know must be considered. I am not including the easier ones — a will for example — but rather the ones that I suspect many of us put off for too long.

Planning For The Future Now

We all need a health care proxy and a living will — who will make the decisions for us when we cannot, because we are physically or mentally unable to do so?

You may have these documents, but there are some complicated questions the standard forms don’t address:

Many of us simply name our spouse as the person who will make decisions for us when we cannot. But what is our spouse is physically or mentally unable to fill that role? Who do you trust after that? Are they young enough that it is likely they will still be around when it matters? Do they know your desires in the hard situations or have you placed those wishes in writing?

A few thoughts on this:

find someone who unquestionably has your interests, and only your interests, as their sole motivation. Make sure they have endless energy, a willingness to research every option, the strength to push back against the medical system and the government to demand you get the best and the most care you are entitled to. Because at a certain age, these systems begin to assume that you are no longer worthy of the best and most care because, in their view, you have lived a long life and the assumption becomes one of death instead of life. If you don’t want this assumption applied to you, your advocate must be willing and able to check and double check every assertion about your care and the rights you have.

Make sure you are comfortable with who will decide whether you have the chance of continued life and who will make the call as to your mental competence. My documents require two physicians to make these sorts of judgment calls because I don’t want to rely someday on one person who had a long day and happens to believe that 85 years is a long life that I should be happy to have had. I see this as a reasonable protection against my life being decided by one person who remains a complete unknown to me at this point.

Consider long and hard how you want to manage your life if you face dementia. Progress is continually being made in this area — do you want to be put on every possible medication that might help, whether off-label or within a research study? At what point —if ever— would you rather end life instead of living in the final stages of dementia? Because if there is a sort of life you don’t want to live, this will require a lot of complex planning. By the time you are living that way, you will no longer be making these decisions for yourself.

Research and plan for the financial aspects of your care now. Medicare and Medicaid are more limited than many of us (or at least I) understood. The sort of life these programs will support may not be the sort of life you want. Research now exactly what will be covered and make sure to explore all the details — you don’t want to be surprised down the line that some arcane exclusion precludes certain types of coverage.

Long-term health care insurance exists but this too needs to be researched at length. Too many people pay premiums for years to later face denials of coverage and uphill battles that require attorneys and courts to resolve.

Be brave enough to take control of your life as soon as you suspect your physical or mental abilities are waning. This requires acceptance of that reality, which is enormously difficult. But it allows you to exert control over your future before it is too late to do so.

Most of us want to live at home until our death. That will usually require in-home care, though, so know what options are available. Making our houses conducive to living as an older person is a first step. One floor homes, wide doorways for wheelchairs, emergency call devices, grab bars, wheelchair ramps — these and many other modifications can facilitate living at home longer. Consider who will help with your care when you require it. Maybe that’s a family member but remember care may eventually mean a 24/7 job. Don’t assume Medicare or Medicare will cover what you need and want. Some things are likely covered, but by no means all.

Many of us can’t really imagine ourselves unable to care for ourselves. And if we are lucky, we will be able to do so until we pass peacefully in our sleep. So part of our essential planning for the future is to take care of our physical and mental health now. Exercising to keep our muscles strong, exercises to maintain our balance, preventative health care, exercising our brains in new ways so that it too stays limber and strong. Things as simple as crossword puzzles, sketching, math games — these all help and the most important thing is to constantly use your brain in new and challenging ways.

I haven’t listed every part of the planning process that will best protect us and it is impossible to plan for every situation. But I do hope we all have the hard conversations now when it matters the most.

Additional Resources

https://www.aarp.org/caregiving/prepare-to-care-planning-guide/

https://seniorsathome.jfcs.org/aging-in-place/

https://www.nia.nih.gov/health/aging-place-growing-older-home

https://www.ncoa.org/article/14-steps-to-get-ready-for-retirement

https://www.nia.nih.gov/health/getting-your-affairs-order-checklist-documents-prepare-future