How To Care For A Parent With Dementia
The time you spend with an aging parent could well extend their lives.
Have you noticed that your mother has started forgetting things, that she is writing notes to herself that she leaves all around her house, often reminders of simple tasks?
When I visited my 97-year-old mother at her apartment, I found scraps of paper everywhere, scrawled with reminders to go to the bank or to send a birthday greeting, the same messages written over and over again. When she made a cup of tea, my mother used a cooking pot to heat the water, forgetting about the electric kettle she had used for decades.
I knew she was losing her mental acuity, but I resisted stepping in, choosing to believe her claim that “everything was fine.”
When my mother ended up in the hospital with a fractured pelvis I realized that her mental confusion, her dementia, had contributed to the fall. Looking at her small sunken body in the hospital bed, her lips swollen and bruised, I saw how easily she could slip away.
After that incident, however, I decided to take responsibility and do what was necessary: openly address the issue and care for my mother as best as I could.
Here’s how I tackled the problem and what I’ve learned works best in caring for a relative with dementia.
1. Study The Illness & Step Into Your Role
Like many of my friends who had cared for an older parent, I jumped into the role without much knowledge. It took months to understand how to try to slow the symptoms of dementia while ensuring safety and dignity.
I soon learned that dementia takes many forms: first forgetfulness about names and numbers, then confusion about how to perform simple everyday tasks or an obsessive-compulsive search for one’s purse or wallet. Alzheimer’s disease develops in a majority of dementia patients but many, like my mother, never advance beyond short-term memory loss and confusion.
When you take over the care of an aging parent, the reversal of roles can be confusing. Parents are expected to make their children’s wellbeing paramount, not the other way around. You now have to take charge and shepherd your parents, an act some independent-minded seniors will resist in subtle and not-so-subtle ways.
2. Determine The Level Of Care You Can Afford
Next, you must assess your options for caring for your parents. Do they have enough resources to pay for in-home caregivers or to move into an assisted living facility that provides medications and basic daily oversight?
A good place to start is with the Administration for Community Living, a federal agency that works with Medicare, Medicaid and the Veterans Administration to provide information about the availability and funding of services for the elderly in every state. The ACL also coordinates Aging and Disability Centers and Eldercare.gov, where local residents can find out what resources are available for them. Once you get a list of potential facilities, whether it is an adult daycare center or assisted living facility, be sure to tour each place to evaluate the type of care your parent will find there.
Some families open their homes to aging parents and, if they are embraced by the family with love, it can help heal the anxiety and isolation of old age.
3. Spend As Much Time With Them As You Can
This is the most important aspect. Regardless what form this takes, the time you as a close relative spend with them may be the single biggest determinant of the progression of their journey.
Here are several ways you can do this.
Be Physically Present
After my mother fell, she landed in a rehab facility to regain her strength. My daily visits revealed just how critical this period is.
Physical therapists would give her exercises, but if I had not reminded her to do them, she would have not regained her strength. When my mother waved away the bland food served, I had to coax her to take another few bites. Dietary aides were quick to whisk my mother’s food tray away even if it was not eaten. I kept peanut butter and Saltine crackers, her favorite snack, in the room and I would offer her one along with a big glass of water.
Over time, I learned that my mother could improve her mental and physical conditions with the right kind of care. Always proud, she never admitted to her failing eyesight or the confused thoughts that rattled around her head. She had no one to calm her anxieties when she forgot what time dinner was served or whether she had bathed that day. She needed thoughtful, caring people around her.
Talk, Talk, Talk
A study published this year in England showed that even ten minutes a day of conversation with dementia patients can improve their quality of life.
Nursing homes and assisted living facilities are not staffed to provide the type of social interaction that helped my mother improve her mental state at age 100 but there is still a lot you can do. Daily visits from family members provide a lifeline to a world they recognize, reducing anxiety. Take a stroll through the facility to socialize with other residents or staff.
If your parent lives in your home, interaction with family members throughout the day provides the security of being safe at home. But don’t be lulled into thinking you can leave unaccompanied parents on their own. Another adult should be present at all times, even when a parent has mild dementia. It’s too easy for them to forget to turn off the stove or to wander off for a walk and get lost.
Consider Having Them Come Home
Accepting an aging parent into your family home requires compassion and patience in your new role. The time you spend together may very well extend your parent’s life.
Dr. John Cacioppo, a scientist who studied human interactions, told the Guardian newspaper that chronic loneliness increases the odds of an early death by 20 percent. You can beat these odds. Dr. Cacioppo also realized that love and social connections are what really matter in life. With a bit of creativity, patience and time you may find your parent’s mental confusion easing and their contentment on the rise.
Integrate Your Parent In Daily Activities
If your parent is ambulatory, consider taking him or her with you on errands. Most seniors I’ve met want to feel that they are still in control of their lives and engage with the world. A visit to the grocery store with your mother-in-law may involve talking about foods she prefers or recipes she would like to try. She may have forgotten about it by the time you get home, but the interaction stimulated her brain.
A trip to the local public library to look through picture books can provoke memories and provides a chance for both of you to talk about where you’ve traveled or where you would like to go. Even 99-year-olds like to listen to concerts or lectures that are often free at the library.
Key to the success of family caregiving is time off for the person who stays at home. If you can afford to hire a professional home health aide for a few hours each week, do it. That gives the other adult at home a chance to visit the hairdresser or take a yoga class.
Give Them A Reason to Live
Not every home situation allows you to bring your parent into your household, so you can work with Medicare or state programs to discover the services that are covered. Whether you and your parent decide that an assisted living residence or nursing home is their best option, your role will be to provide the stimulation that helps them thrive.
If you work or live in a distant location and are unable to visit your parent regularly, look into volunteer organizations that offer in-home social visits like ElderHelpers.org or the National Council on Aging. With resources, you can hire a home health aide whose job is to stimulate and engage.
My mother was lucky. She had saved all her life and now she has aides, “friends” she calls them, who spend the day with her. The energy they project has attracted an ever-larger group of women from her assisted living facility who get together every afternoon to listen to old-time music, fill-in crossword puzzles, laugh and just live!
I hope these steps will help you and your parent struggling with dementia to do the same.