Caregiving Tips: Understanding Your Parent’s Perspective

Shirley Tulin, 93, feels lucky that her adult children don’t make care decisions or call the shots for her. The former social worker knows it’s not always that way. Friends tell her that their adult children treat them like children. Others feel that they’ve given up control, independence, and their voice to family members.

Not in Tulin’s case. “My kids very much honor my wishes. They are careful not to overstep with me,” she says of her adult son and daughter. She is careful to do the same. Four years ago, her son moved from Connecticut to San Diego to live nearby. “I try not to call on Eric too much. I don’t want to be a burden,” she says.

When we talk about caregiving, it’s usually from the adult child’s perspective. But when it’s our parents who are receiving the care, we need to understand their mindset and concerns. Of course, if they are cognitively impaired, that is a different situation. Knowing their feelings will also help with necessary but difficult conversations, whether it’s about driving, banking, hiring help, safety, housing, or something else.

Caregiving From an Aging Parent’s Perspective

When you are older, loss and change are inevitable. These losses may be people you love, including those with dementia who are no longer mentally “there,” physical limitations, or the comfortable status quo. Anticipating these losses can be worrisome and cause fear.

Often parents react out of fear, says Suzanne Modigliani, a Boston-based Aging Life Care Manager (formally known as a geriatric care manager) who works with families to provide solutions to complicated eldercare problems. Her job puts her in constant contact with care recipients, as well as with their family caregivers. She says adult children need to understand what their parent’s fear is about.

The biggest worries, she has observed, are losing control (or giving it to someone else) and losing their independence (such as when they have to stop driving). But there’s also the fear of loss, and of being without those they love.

Understanding Feelings of Fear

As the adult child, it can help to have prepared responses for the inevitable fears that will arise. Here are some common scenarios.

Parent’s fear: “If I move into assisted living, you won’t have to do as much for me, so I won’t see you as often.”

Consider saying: “You are not losing me. It will free me up for lunch with you. I can go back to focusing on being your son [or daughter].”

Parent’s fear: “I can’t afford to get help at home or to move to a senior living community; it will bankrupt me and I will literally be out on the street. Plus, I am spending your inheritance.”

Consider saying: “It would make us feel better and give us peace of mind if you would spend your money on you. That’s what it’s there for. It’s true people can go through a lot of money paying for long-term care or home health aides, but there’s enough so you don’t have to worry.” Or, “If you were ever to run out of money and were in long-term care, we could qualify you for Medicaid. You’ll never end up on the street.”

The Big One: Having to Give up Driving

Fear: “If I stop driving, I won’t be able to go anywhere and I will have to sit at home all day.”

Consider saying: “Let’s have impartial professionals make the decision about whether it’s safe for you to drive.” This way, it’s not you versus them; it’s more objective.

Explain to your parents that there are many ways to get around that are easy to arrange; have your list ready. There are the apps Uber and Lyft, as well as cabs. Geared specifically to older adults are GoGoGrandparent (no smartphone app required, just call a number), SilverRide, and ITNAmerica (Independent Transportation Network). Too bad driverless cars aren’t available yet; they could be a game changer for older adults in the future.

Tip:

The Hartford’s guide to comprehensive driving evaluations is a great resource for finding a program, understanding the process, and answering commonly asked questions about driving evaluations.Many hospitals offer driving assessments; to find one in your area, consult the American Occupational Therapy Association.

More Worrisome Thoughts

“If I ask for help (such as with banking, dressing, driving, care), I’ll be perceived as weak and incapable. My kids will think I can’t take care of myself, so I’ll just say I’m fine.”

“If I get help, they won’t do things the way I like. I want to do it myself. I also don’t want some ‘stranger’ hanging around with me.”

Older adults also fear rejection: “What if my new living situation doesn’t work out and I’ve sold my house? What if I don’t like the people there or they don’t like me?”

“Everyone is afraid of change, so,” for many older adults,” sticking with what you have is less risky than changing, even if things are falling apart around you,” says Modigliani.

Strategies for Parenting Your Parent

Figure out what your parent is afraid of, and then take that into consideration when you’re having a conversation with them. If they’re resistant to your suggestions or help, what might be the reason?

Give them choices, so they feel they are still in control. If you’ve researched assisted living facilities, for instance, hone your list to two or three and then have Mom or Dad look at them and see which they like better.

Be empathetic. Acknowledge what they are going through (for example, “I understand you wish it were different”) and reassure them that you will be there every step of the way and they are not going through this transition alone.

Be matter of fact. If they say they’re capable of taking care of the bills, for example, or “Why are you doing this to me?” show them that their bills haven’t been paid, or that they’ve overpaid, or papers are scattered around the house. Saying, “I don’t want you to have to worry about this” could also be helpful.

Ace the Golden Rule test. If the situation were flipped, would you like to be treated or talked to the way you’re doing with your parent? Under the circumstances, would you think it is the best choice or decision?

Be partners. Confer when you can. For example, on the topic of writing checks: Instead of Mom’s feeling that you are doing the finances for her, make it with her. “We don’t want you to worry about your bills. Why don’t we sit together and I will write the checks and you can sign them?”

Don’t be patronizing. Your parents are adults, not little kids. Don’t talk down to them or speak to them in a singsong voice. Treat them with dignity. Ever heard of elderspeak? It might be the way you’re oversimplifying what you’re saying even if they can understand it perfectly well, or speaking louder than you have to. It can make older adults feel incapable, irritated, or depressed.

Get their ducks in a row before there’s a crisis. Have the legal documents you need signed and know where they are. Scrambling at the last minute to get them can trigger contentious exchanges with your parent or siblings. The legal papers you need may include: a durable power of attorney for finances, an advance medical directive or living will, a durable power of attorney for healthcare and a HIPAA release, in some cases a revocable living trust, and, of course, a will.

More than anything, your parents need to feel that they are part of the process. If they’re reluctant to discuss or sign these documents, you can always take the blame (that it worries you, the adult child, and, by signing them, they will help put you at ease).

You might want to point out something they may not have thought of: If they don’t have the proper papers, it’s possible that someone they don’t know, such as the court or healthcare workers, might end up making their care decisions.

Lay the groundwork. With respect can come collaboration and effective, loving communication — all of which will contribute to creating a positive environment for making whatever decisions ultimately have to be made.