Hiring Respite Help: Why You Cannot Care for a Spouse with Dementia Alone
Twenty-four-hour dementia caregiving destroys the caregiver. Here is how to find and pay for respite help, in plain language for a senior spouse.
At a Glance
In this guide (6 steps):
- 1.Accept that you need help — and write down what you actually need
- 2.Call the Eldercare Locator at 1-800-677-1116
- 3.Look into Medicare, Medicaid, and the VA
- 4.Hire through a licensed agency, not Craigslist
- 5.Try adult day services for the social benefit
- 6.Schedule respite the way you schedule medications — non-negotiable
Accept that you need help — and write down what you actually need
~37sQuick Tip
Quick Tip: Many spouse caregivers underestimate how much help they need. If you are deciding between 4 hours and 8 hours, choose 8. You will use it.
Call the Eldercare Locator at 1-800-677-1116
~25sLook into Medicare, Medicaid, and the VA
~39sWarning
Long-term care insurance, if your spouse has a policy, often covers home aides and adult day care. Read the policy carefully — many have a 90-day elimination period before benefits start.
Hire through a licensed agency, not Craigslist
~28sTry adult day services for the social benefit
~28sSchedule respite the way you schedule medications — non-negotiable
~25sYou Did It!
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The most dangerous belief in dementia caregiving is the belief that you can do it alone. You cannot. Not because you do not love your spouse enough, and not because you are not strong enough. You cannot because no one can. Around-the-clock dementia caregiving is a job that hospitals and nursing homes staff in eight-hour shifts with multiple people. And they still rotate workers because of burnout. You are one person, often in your 70s or 80s, doing the work of three shifts and getting no time off.
The statistics are sobering. Spouse caregivers of people with dementia have a 60 percent higher mortality rate than non-caregivers of the same age. Forty percent of spouse caregivers will die before the person they are caring for, often from heart disease, stroke, or accident. Depression rates run above 50 percent. Many caregivers stop seeing their own doctors, miss their own medications, and gain or lose dangerous amounts of weight.
This is not a guilt trip. This is a permission slip. Hiring respite help is not giving up on your spouse. It is the thing that lets you keep being there for your spouse. Even four hours a week of paid help, used to take a nap or see a friend or go to your own doctor, has been shown in studies to lower caregiver depression and extend the caregiver's life.
Respite help comes in many forms. There is in-home care, where an aide comes to your house for a few hours or overnight. There is adult day care (also called adult day services), where your spouse spends 4 to 8 hours at a center built for memory loss while you have your day. There is short-term residential respite, where your spouse stays for a weekend or a week at an assisted living or memory care facility while you rest, travel, or have surgery. And there is informal help — adult children, neighbors, church volunteers, and friends — that you should also ask for, even if it feels uncomfortable.
This guide focuses on paid respite because that is the kind most spouse caregivers underuse. Many believe they cannot afford it. Most have more options than they realize.
This is not medical or financial advice. The Alzheimer's Association 24/7 Helpline at 1-800-272-3900 has trained specialists who can walk you through respite options in your specific county.
(Sources: Alzheimer's Association — Respite Care; National Institute on Aging — Respite Care; Family Caregiver Alliance — National Center on Caregiving; ARCH National Respite Network)
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