5 Tips to Begin the Caregiving Journey
When the word “dementia” is used in your loved one’s diagnosis, its syllables just seem to hang in the air like they’re stuck. Even if you’re almost expecting to hear it, once that word is actually uttered by a physician it becomes official, and the noise of it plays at the entrance to your ear canal, like you just can’t quite absorb the sound—or its meaning.
Whether it’s your parent, grandparent, spouse, or someone else special to you, a dementia diagnosis can leave you emotionally flattened. When I was told my grandparents had it—both of them at the same time—I didn’t fully understand what it was going to mean for them (or for me) going forward. The problem is that the average new caregiver doesn’t always have the luxury of time to sort it all out.
My grandparents had wandered off from their home only to turn up four days later in a wrecked car. I was shocked and grieved, but there was no opportunity to evaluate my feelings because they needed me immediately—urgently—and they would for the rest of their natural lives.
All caregivers go through something similar: the recognition of a problem, then a diagnosis which is followed by debate and research to decide what the best care options are. And as the debate rages, the primary caregiver begins to feel the weight of responsibility as they realize, “I don’t know what to do!” So, just what should a new caregiver do?
Check the documents: Find out who has Power of Attorney (POA), one for healthcare and another for finances. The person with the POA will be the one who has authority to act for the senior needing care.
Recall past conversations: Remember the discussions you had with your loved one regarding their preferences: Did they want to be on life support? What did they say about long- term care, assisted living or nursing homes? (One key thing about recalling the conversations: there have to be conversations to recall. If you have aging loved ones, PLEASE start a dialogue with them about how you can help them as they age.)
Know the finances: Does your loved one has enough money to see them through potentially years of needing care? If they suddenly require long-term care but lack the funds to pay out-of-pocket, they may need to apply for Medicaid, a combination of federal and state dollars provided to help cover the cost of a nursing home. (Please note: Medicaid looks back five years into the financial business of each applicant; monies which have been gifted to friends or relatives may have to be paid back, otherwise the applicant may be denied coverage until five years from the date the gift was made.)
Develop a team: The caregiver’s role is labor-intensive and emotionally difficult. Enlist family or friends to help with simple things like monthly virtual visits with the one in long-term care. People can bring a meal for the primary caregiver, or assist with grocery shopping or house cleaning. There’s plenty of items which require the personal attention of the primary caregiver, but for things that fall outside that direct role, allow people to come alongside and help.
Allow for self-care: It cannot be overstated that providing care for a senior loved one takes an exacting toll. It is imperative that you deliberately carve out time for yourself otherwise it will never happen. If you burn out, what happens to the one you’re caring for—who’s going to look after them if you’re not able? There are a number of adult daycare providers nationwide which can allow caregivers to have a break; look into these and see what’s possible for you, then take time to have coffee or watch a movie with a friend, read a book you enjoy or engage in some activity which takes your mind off of caregiving.
Successful caregiving requires organization, and the earlier you begin planning, the more prepared you’ll be when your loved one needs you. Ease your caregiver stress by getting prepared for the job.