Taking care of a loved one with Alzheimer’s disease is a duty many are happy to take on. But who is taking care of the caregiver?
There are more than 5 million people in the United States living with Alzheimer’s, and the majority of those reside in private homes where they are cared for by family or friends.
It’s a misconception that most of the people with Alzheimer’s are in nursing homes, really it’s spouses and adult children, also brothers and sisters, nieces and nephews, friends, stepchildren and even former spouses, who are the ones providing this care.
And dealing with someone who is suffering memory loss, is having difficulty communicating and is confused, frustrated and nervous can take a toll on those providing care. The task often is a 24/7 job and a huge emotional drain.
It takes an enormous toll. In the caregiver, about half of them report trouble sleeping, a quarter experience new or worsening health and many have worries about financial needs.
In 2013, 15.5 million family and friends provided 17.7 billion hours of unpaid care to people with Alzheimer’s and other dementias, according to the Alzheimer’s Association. And due to the physical and emotional toll, caregivers had $9.3 billion in additional health care costs of their own in 2013, the association reports.
So it’s just as important for the caregiver to tend to his or her own needs as it is to be helping their loved one. Eat healthy, continue to exercise, get sufficient sleep.
The average amount of time a person lives with Alzheimer’s is about eight years, although the range can be as little as a year or two and as much as 20 years. That’s a long time to be constantly on call.
So a big part of staying healthy, both physically and emotionally, involves caregivers taking breaks from their duties.
The best thing you can do for the person with Alzheimer’s is to take care of yourself and take a break. Having that break is a time to refocus and rejuvenate. Breaks can be just a few hours or a longer time away.
If you have the option, take a couple of days away. People get respite for things like running errands, and that’s great, but people should do things that replenish themselves.
Get out of that caregiving role for a bit and just breathe. Put it in the perspective of what would your loved one want for you?
Breaks are important because they also allow for a release of tensions.
It a protection against treating a person with dementia badly and responding in anger. It’s important for the caregivers to have emotional energy to care for their loved one, and to have that, sometimes you have to have space.
That’s why it’s important for caregivers to continue to have their own social outlets.
Don’t give up attending church or going to book club. You need to allow your life to have some normalcy.
And support groups are important, particularly those specific to Alzheimer’s.
There are a couple of ways for caregivers to get breaks. One is to ask a family member, friend or neighbor to help. Paid providers are another option, although for those with limited funds that can be difficult.
If caregivers don’t have someone who can step in and give them a break or don’t have the money to pay a caregiver, reach out to the Alzheimer’s Association, which can help with funding for respite care.
The Alzheimer’s Association also has representatives who can meet with families to provide tips and determine care needs.