6 Ways to Stay Ahead of Alzheimer’s Disease
Advocacy As the family caregiver, you need to learn to coordinate it all, without being the only one to do it all.
Taryn’s mom began showing subtle signs of memory loss – repeated questions, confusion using the microwave, getting lost when driving home – long before she was diagnosed with Alzheimer’s disease. “Not only was I saddened by the eventual loss of this vibrant, strong woman who had always been there and cared for me,” she reflects. “I was scared of what this meant for both of us. How would I handle it?”
Like most people in this situation, Taryn was overwhelmed by the decisions she now had to make for her mom. Should she find an adult day-care, a nursing home or even hospice when the time came? How did other family caregivers in similar situations manage and cope? Taryn often thought, “What questions should I be asking and what other resources will I need that I’m not even thinking of? How do I plan for what’s to come?”
When Alzheimer’s disease strikes, it is not just the patient who is affected. The disease invades the lives and homes of families and friends who must provide ever-increasing care. Family caregivers find themselves in the middle of a dizzying whirlwind of decisions to make, medications to manage and appointments to coordinate. And through it all, caregivers need to take care of themselves so that they are able to care for others.
Some caregivers, like Taryn, are able to see the symptoms emerge and progress. Other family members are thrust into the role of caregiver with little or no warning. Perhaps your loved one’s changing behavior was written off as aging, or depression or masked by another chronic condition. Then one day an event occurs that feels out of the blue. Erratic behavior. Wandering. An undeniable loss of communication – and all of a sudden you are the family caregiver for a loved one with Alzheimer’s disease.
Todd and Alice had been married for over 50 years. Like many couples of their generation they finished each other’s sentences, they went everywhere together and supported each other through the assorted health challenges of growing old together. But one day Alice called her son, distraught. Todd had gotten lost and had to call Alice for directions home.
No one had ever suspected that Todd had memory issues, much less Alzheimer’s disease. No one suspected, because for years Alice had been innocently covering for Todd’s lapses. Now, all of a sudden, they had to confront a diagnosis of Alzheimer’s disease.
It doesn’t matter if your caregiving journey started gradually or all of a sudden. What matters is that you made a promise to care for your loved one and you will live up to that promise.
Here are a few things you can do to prepare for your future as an Alzheimer’s disease caregiver:
1. Think about joining a support group.
If you can’t join a group that meets in person, seek an online community.
2. Learn about medication management.
And create a medication list that works for you and your loved one.
3. Work with your loved one.
Make sure all of the necessary paperwork is in place; advance directives, living wills, powers of attorney, etc.
4. Talk openly.
If possible, have a discussion with your loved one to learn their wishes as the disease progresses. Does she want to stay at home? Does he want to move in with other family members?
5. Assess your finances.
Talk to your family to learn what financial resources – if any – are in place.
6. Tackle the all-important question of who is going to help.
Maybe your brother across the country can handle medical bill reconciliation. Your mom’s sister can be assigned the task of keeping the rest of the family informed.