This is not a piece about the many healthy, vibrant elderly living happily and autonomously on their own.
It's not a piece on all the many problems and stereotypes
that people with disabilities have to deal with every day, although some of these observations may be relevant to them.
It is a piece about older people who are frail and suffering from dementia and other signs of cognitive aging.
Growing Old Is Not For Sissies.
I hear that phrase the time, but didn't really think about it. At least not until my dad really started to go downhill.
I spent a lot of time with my father this week: running to doctors, sitting through meetings with therapists and home health aids, and going through the everyday business of life.
My dad looks and acts 'old'. Every medical form he signs describes him as 'frail' and lists him as 'alert confused'. His decline had been long and slow, but suddenly it's fast and steep. Everything is effortful for him: walking, eating, talking, even looking. His memory is fading and his speech is slow.
He needs a lot of help. Not a little help, but the full time care that my mom devotes to him.
Kids and the Frail Elderly: Similar Problems
It takes patience to work with people like my dad, despite how much he loves my mother and how hard he tries to care for himself and remain independent.
Watching him in many settings, I was struck at how similar the skills needed to work well with people sliding into dementia or with severe disabilities are to the skills needed to work well with kids. It is very easy for well-meaning folks and caregivers to make the same mistakes with my dad as we too often do with little kids. For the same reasons. Just like little kids, the frail elderly have problems with many daily activities:
- Getting dressed and washed
- Organizing complex tasks like taking pills, scheduling events (my father had FOURTEEN appointments this week)
- Eating, which is a lot more complex than many of us remember: moving food to the plate, cutting, managing fork, knife, and spoon, swallowing effectively, staying neat, pouring and drinking beverages . . .
- Communicating what they want, what they need, and how they feel
Simple Steps To Make Help Really Helpful
- Ask people what they WANT. It's really easy to look at someone else and tell them what they need or what they should do. You WANT to watch this tv show. You LIKE it. Or these carrots. Or to take a nap. We do that with kids. We also do that with adults who, for whatever reason, seem to need care. What to do? Start with the assumption that people know what they want. Or know what they DON'T want. They tell you they're not hungry, assume that they know. They tell you they're hot or cold or tired. Believe them. Who knows better than they?
- Listen to what people say. When people tell you something won't work, listen to their reasons. They could be right. Don't assume you know better. Listening will help you learn more about what is important to them so you can offer more effective advice.
- Suggest alternatives they haven't thought of. Lots of times we get so used to doing things one way that we can't think of any others. For example, my mom was having trouble reaching her plates on the top shelf. Moving them down to the lower shelf and putting some less used items up top made the plates easier to access. No big deal, but it was just different than it was. Sometimes when we've had a problem, we've tried everything we can think of and nothing works. Offering different ideas can give people more to mull over. Something may work for them. And remember, we often need time to mull over an idea before we come to decide it may work and give it a try.
- Be insistent about safety issues. Safety isses are not an area to compromise on. For example, the elderly have to protect themselves from falls. We ALL do. If there is a safety issue you're concerned about, push it. No one wants to think they're vulnerable and things can creep up on you so you don't realize there's a problem. My husband's 95 year old grandmother had been walking down her dark basement steps for 75 years without a bannister. Sure she had to reach overhead and grab the string on the light. But she'd always done that. When the bannister finally went in, she realized how much easier it made her life. Safety issues are often like that. Help people listen to the doubts in their own mind.
- Safety is something that you don't want to compromise on. HOW safety concerns are met depends on the needs and wants of the person concerned.
When Caring for Vulnerable People
When people can't speak for themselves or when they do daily tasks more slowly than we want them too - especially when WE'RE troubled and need support ourselves - it's easy to forget ourselves and move too quickly.
Some things to keep in mind:
- Talk TO people, not over them. You're talking to a doctor or an adult child. They ask about the person you're caring for. And you tell them: about the memory problems, the dementia, your frustrations. You talk as if they're not there. We do that with kids too. But we shouldn't.
- Take time. People who can walk can't always walk quickly. Just as it's often easier to push kids in a stroller than to let them walk at their own pace, we can do the same thing with the elderly. It takes a long time to walk in a walker. Pushing yourself in a wheelchair is exhausting, especially when you're physically weak. Walk with people slowly. Take your time. Follow and support, don't lead. (Perhaps that's the bottom line of this whole piece.)
- Listen. When my dad wants to say something or I ask him a question, it can take a long time for the words to come. You have to wait. Several times this week, I've heard professionals ask what seems a simple question: What month is it? How many children do you have? How old are you? You can see him formulate an answer, but often the person asking goes on to something else before it comes out. Take time.
- Let them do it. There are lots of things that people who have trouble with daily skills need help with. But it is critical that they do what they can for themselves. Both because it helps support continued psychological autonomy, but also because it maintains skills. Use it or lose it. There are days when my father can barely open a package of Sweet and Low to put in his tea. Other days he can easily take his walker from the couch to the car. Pace your support according to what they can do that day, not your own schedule.
- Hold their hand. Sometimes what people need most is to know that they're loved. Often we care for the people in our lives because we love them. That's what makes it worthwhile. Letting them know how much we care about them reminds them when they may be feeling vulnerable and also reminds us about why we're doing it.
An excellent guide to resources for the elderly is available through the New York Times blog The New Old Age (http://newoldage.blogs.nytimes.com/)
My father and mother both gave me permission to talk about our family in this post.