Andrew sits in my office exhausted and emotionally spent. Until a year ago, his life was going well. In his late 40s, Andrew found his business thriving post-recession. He worked long hours, but it was paying off. He was proud of the home he and his wife Alison had worked hard to buy. His two children were in a good school and doing well. Alison had a successful career. While always juggling, they were holding it together.
Then everything changed. Last year, Andrew's 76-year-old father Henry started to deteriorate and was diagnosed with Alzheimer's. Now, Andrew, Alison and Andrew's mom have to deal with both the emotional devastation of seeing Henry decline and the daily impact his disease has on all their lives.
Many conditions of aging require intensive, hands-on, expensive care. But, like most of us, Andrew never thought about this hardship: it happened to other families, not theirs. Now that it had hit them, they realized that the government and insurance companies do not pay for the extent of care needed in aging. It was on them. They had no plan for the work and money involved in caring for Henry.
Henry eventually needed 24-hour care, yet Andrew and Alison couldn't afford a high-quality, appropriate facility and his mother didn't want his father in an institution. So they made do, but were stretched. Andrew, Alison, and Andrew's mom became around-the-clock caregivers, with some paid help. His mom was stressed, worried and overwhelmed by the emotional and physical drain of caring for her declining spouse. Andrew and Alison both had to carve out time to care for Henry, which meant spending less time with their kids. The toll it took was tremendous — emotionally, time-wise, physically, and financially.
Most of us are like Andrew in that we don't see this coming until it's upon us. The thing no one tells us is this: each of us will likely care for aging parents or relatives, and we will likely need care ourselves.
A New Life Stage We All Will Go Through – Frailty
The first step in planning for aging parents — and, if we're being honest, in planning for our own aging — is a simple but profound acceptance: all of us will encounter the "stage of frailty" one way or another. We will go through a time when either we, or a loved one, need caring for. No one is exempt. It is now a normal stage of life.
This wasn't always the case. With the amazing advances in medic al technology, we are surviving serious illnesses that once would have killed us. We now simply live longer than ever. In the next 15 years, one in every five Americans will be over 65. And now, our fastest-growing group in the US is 85 and over. A hundred years ago, we only lived through our 50s. (http://www.agingstats.gov) We didn't need to worry or plan for living through long illnesses or into our 80s or 90s. So the "stage of frailty" is new. But, as the NY Times says, "living longer doesn't come cheap," (NY Times, July 21, 2010, Old Age in America, Dale Russakoff) and it doesn't come easy. But if we embrace it and plan for it, it will come easier.
Planning for the Stage of Frailty
Once we accept frailty as an expected stage of life, planning becomes clear. We can, and do, plan for other normal events in life, so we can plan for this stage, as well. Just as we plan for our children's education, for buying or renting a home, for a vacation, and for our retirement, we must plan for our family's and our own aging and long-term care needs.
Sure, this sounds good in concept, but how do we actually get ourselves to plan for this less-than-ideal life stage? This planning is tough. Not only is it worrisome and scary, but it involves a family working together. Plenty of families have challenges just being together at the dinner table, let alone planning for long-term, resource-gobbling, upsetting events like parental aging.
As a therapist, I find the concept of the family team essential for framing the discussion of planning for aging.
THE FAMILY TEAM: Families Planning Together, Warts & All
First and foremost, aging and illness doesn't happen to a lone individual; it happens to the entire family. It takes many people — a family and professionals — to care for an ill or aging person. It's a team effort. No way around it.
The concept of the family team needs to be front-and-center from the beginning. The plan that best suits your family, and one that will serve you well when needed, grows out of the family thinking, talking and planning together, ahead of the crisis.
Makes a lot of sense, right? Sure, but not so fast.
Plenty of advice about families doesn't acknowledge the fact that families are complicated, and while there is love, there is also conflict. As a psychologist (and a member of my own family!), I know that as well as anyone. And we all know too well that no matter how old we are, when we interact with our families, we go right back to the roles, patterns, hurts and alliances we had as children, as if nothing has changed! As crazy as it seems, it's true. And there's nothing like taking care of an ill or aging family member to put us right back in the thick of things with our families.
So let's ask again. How do we plan for aging parents, with our real-life family team — love, warts and all?
As a family team, we need to see ourselves as working together toward the common goal of caring for the aging parent. And an important secondary goal is that we want to keep all family members, the aging parent and the caregivers, connected and respected through this trying stage of life. It's essential to recognize that each person has different personalities, needs, agendas, strengths, weaknesses, resources (particularly time and money) and proximity (who is nearby vs. far away). Fully aware of these differences, we need to find a way to work together.
When to Have the Planning Conversations
Start the process while everyone is healthy and feeling positive. We don't learn to ride a bicycle in a snowstorm — it's too hard. So don't wait to plan in a crisis. Do it on a clear day. One way to do it is to have the conversation based on your parents' age. If they are age 60 or older, no matter the health, it's well time to have the first of many planning conversations with them (and about them, with other family members). If you make the reason for the conversation simply because of a natural fact that we all will age, you are more likely to have a constructive initial conversation.
Planning for aging parents is a process, a series of conversations with them and your family over time — not one pivotal conversation.
Here are some conversation-starter questions you can provide to your clients:
QUESTIONS FOR FAMILY DISCUSSIONS
- What do you hope for in your or your loved ones' stages of frailty (older age or illness)?
- What do you hope for your family as a whole during these times?
- What are some fears and worries about aging (your own or when your parents, aunts/uncles, siblings —whomever you're planning for — age?)
- What would be the worst parts of this scenario?
- Who will be impacted by caring for this person?
- What would the more positive scenarios look like?
- What small steps can you take to make the more positive scenarios happen, and to avoid the more negative ones?
- Key topics to cover:
- Money. How will expenses be covered? (including daily living expenses, health care, in-home help, housing, etc.)
- Medical care. How will medical care be accessed and paid for?
- Home health assistance. Who will provide this and how will it be paid for if you need outside help?
- Independence. What arrangements can be made so parents maintain as much independence as possible?
- Living situation. How will parents have a living situation that is safe and where they can access transportation and engaging activities?
- Social relationships. Crucial to healthy aging: How will parents maintain social relationships and activities? How will they be able to get to friends and activities?
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