Consider the twin cruelties of having a loved one with Alzheimer’s disease: On the one hand, caring for him or her is non-stop responsibility, stress and expense. On the other, you have to watch the person you love slip away, or even worse, become a disoriented or even hostile stranger.
Here are a handful of practical things many wish they had known before caring for someone with Alzheimer’s.
1. Care For Yourself
Caregivers have much higher incidence of depression and psychiatric symptoms than the general population, and are at increased risk of high blood pressure and other health problems.
It is absolutely crucial for caregivers to carve out time to take care of themselves, and enlist help to do it. This can be tricky because not only are there seemingly no hours left in the day, but caregivers may feel guilty about “neglecting” the inexhaustible needs of their loved-one in order to focus on themselves, the “healthy” ones. But you have to overcome that.
2. Get Long-Term Care Insurance
Many have medical insurance, which is a good start. But that coverage doesn’t begin to pay for all the extra services required to care for someone with Alzheimer’s.
Many burn through their pensions, life savings, even children’s college funds to pay for Alzheimer’s care. And some couples have been forced to get “Medicaid divorces” in order to protect their assets and get their spouse eligible for government help.
Long-term care insurance can help protect against financial devastation.
3. There Is Support For Caregivers, 24-7
Support groups, especially from the Alzheimer’s Association, are so crucial to maintaining sanity.
You come to think of your group mates as extended family. Furthermore, the association has a 24-hour hotline that connects people with resources, information and plenty of compassion.
4. Get Your Act Together, Legally
Power of attorney, living will, DNR: these terms all probably ring a bell for most of us, but we often don’t get them sorted out early enough. It is crucial to get these things organized before the patient declines too much, and before the caregiver is completely overwhelmed with responsibilities.
This can’t be stressed enough. Get your legal affairs in place. Perhaps consult with an estate planning attorney to get the details right, because when the time comes, you won’t want to be sweating the details.
5. Be Prepared To Be Unprepared
No matter how prepared you are, the shock of taking responsibility for someone with Alzheimer’s makes you forget your lines.