Sometimes, you hear a diagnosis that hits you hard. A doctor says your aging loved one has dementia.
Not much.
What does matter is that you don't get sucked into denial and pretend that everything is going to be the same from now on.
Unfortunately, we don't get a course in school telling us what to do and how to be helpful when an aging parent develops dementia. We may not even be clear about what the word means. A startling reality is that by the time a person is 85 years of age, the odds of developing Alzheimer's Disease, presenting as dementia, are about one in two.
Dementia is a symptom of brain disease, often Alzheimer's Disease. We don't have a cure and we don't know the cause. We have good ideas about how to prevent it, but it's too late for prevention when your aging loved one already has significant problems with memory loss. There is no medication that changes the overall course of the disease, though some medications provide temporary improvement in short term memory.
I was having lunch with a friend whose Mom has dementia. My friend asked, "What can I do for my Mom? She lives so far away. My sister is taking care of her. My Mom is difficult. I feel useless."
We talked over what she could do. It's much like my work at AgingParents.com, coming up with a strategy. Here's the gist of our lunch table conversation.
If you want to "do something", develop a clear idea about what that means. You do need a plan. Here are some suggestions:
Pitch in. Make sure your sister does not have to carry the caregiver burden all by herself. It's a heavy load. Give her some encouragement, appreciation, or relieve her yourself when you can, on a regular basis.
Take on a task long term. If paying bills for Mom is easier than getting on a plane or driving long distances to visit, then offer that help. Managing property, bookkeeping, communicating with essential people, doing banking, getting prescription refills and other chores can often be done online or by phone. You can "do something" even if you live far away.
Think creatively about things your Mom might enjoy and offer to do them when you visit Mom. Suggestions for caregivers are available through caregiver organizations, such as the
Be sure the legal paperwork is in order. Before too much time passes, Mom may not be competent to sign anything. Take the lead and find out if your loved one's legal documents, such as Durable Power of Attorney, Will, Trust, and advance healthcare directive are up to date and signed.
Avoid criticizing your sister, no matter what. She may not be perfect at the job, but there is nothing more disheartening to a caregiver in the daily grind of the job than to hear fault-finding from a sibling who isn't doing the work. If you think more help is needed, offer to give it, pay for it, or find it.
Be a good listener. If your other family members are on site and doing the hard work of day to day caregiving, you can check in on a regular basis and let your sibling or other family members vent. It costs you nothing. It requires no more than a patient attitude and the will to show your support by asking how things are going. This can be more helpful than you realize. Watching a parent in decline is often sad. Talking about the emotions involved can relieve everyone's stress.
So, for anyone who also feels useless in the face of a parent's dementia, there is a way to become useful. You don't need a special skill or expertise. You'll need to learn about what is needed, be wiling to extend yourself, and stick with your efforts. If you do, you'll look back on this time in your life without regret. Life without regrets is indeed a worthy goal.
Until next time,
