Caregiving advice from someone who has been there
Here’s my advice based on my experience as a daughter, caregiver and health journalist, but I am not a medical expert:
Cherish your time together. Spend as much time with your loved one as possible. Try to call daily if you’re out of town. Besides strengthening your bond and lifting both of your spirits, you’ll be better able to monitor any changes. Focus on joy.
Have the talk(s). It’s best to know your family’s preferences on everything from caregiving to emergency or end-of-life care long before you need to act on them. Designate a point person to serve as the health-care advocate, and complete the necessary paperwork to ensure that medical personnel will share information with you.
Do your homework. Learn as much as you can about dementia, its symptoms and its relation to other health conditions.
Know your options. Investigate resources and support services in your area.
Roll with it. Enjoy the conversations, and make the most of the journey. Allow them to be the adults that they are, without patronizing them. Avoid finishing their sentences or cutting off repetitiveness.
Don’t take things personally. Anticipate various outcomes, and expect the unexpected. Some things might be beyond your parent’s control; not necessarily on purpose.
Focus on safety. Think about cooking, falling and driving for starters. Talk to a professional for strategies, if necessary, especially if there’s a problem separating your parent from the car keys.
Pace yourself. I have friends who feel guilty if they enjoy themselves while a relative is ill, but it’s important to recharge your batteries—unless you, too, want to be ill or worse. (It happens to caregivers all the time.) Keep in mind that you can give more, not less, if you take some time for yourself. You deserve a break, and you need it—especially if you’re a primary caregiver.
Build your angel network. Lean on family and friends. Consider joining a support group. Two childhood friends, Pam and Elizabeth, who have been there and done that when it comes to caregiving and dementia, were my rocks. They were my ride-or-die chicks who were ready for whatever—prayer, meals, visits, laughter, adult beverages, reality checks, diversions. My mother loved them as much as I did.
At my lowest point, Pam whisked me away for a free dance class at the community center in our old neighborhood. It worked wonders. I focused only on my feet and the beat for an hour or so. I felt rejuvenated, and I did the same for another friend when I returned home.