What is respite?

The word respite is frequently used in the world of caregivers, paid and unpaid, but how many know its meaning or the importance of it? Respite as defined by Merriam-Webster as an interval of rest or relief.


There are statistics everywhere, but they can vary depending on who provided them and when they were provided. So I’ll just say that somewhere between 44 and 50 million people in the US are caring for someone who is disabled or sick and over 18 years old. Millions of these caregiver’s provide full time care.

The National Family Caregiver’s Association, as well as other organizations have done survey’s and studies, and have found many family member’s have not even identified themselves as a caregiver until months or years after providing care.

Family members of those afflicted with Alzheimer’s typically provide a substantial amount of care, and like Bob DeMarco have committed themselves to full time care. Some have taken on this full time responsibility as a positive choice, some have chosen full time care as a cultural obligation, yet others feel they have no choice.

No matter how you have found yourself in a full time caregiving situation, your life has significantly changed. Depending on the degree of dementia, and the disposition of the illness, and your ability to deal with stress will determine the toll full time caregiving can take on you and your health.

Caregiving is difficult in any situation, let alone full time with a loved one with advanced Alzheimer’s. When the diagnosis was given it didn’t come with an instruction booklet, just as a newborn baby doesn’t come with instructions. You kind of learn as you go. Some families have the time, and resources to research and learn as much as they can, and others, for whatever reason, don’t have the time or tools to educate themselves. It is a blessing that people like Bob DeMarco have spent countless hours in research and education and are willing to share that with other families, saving them time and effort.

If you are a caregiver, I am sure you have heard you need to take care of yourself. I have said this to countless family caregiver’s, but how many really take time for themselves? If you are like me you have never put yourself on the priority list so taking care of yourself is a foreign concept. Self care is a process, and must be added to the to-do list if it’s going to happen at all. Never has self care been more important when you find yourself in the caregiving role.

We all need to have respite. Respite from work, respite from responsibility, respite from parenting, and yes, respite from caregiving. Many of us have taken a week vacation once a year as our respite from life’s responsibilities. When you are a full time caregiver a week vacation may seem like a luxury you will never have, and maybe you won’t, but you can, and should have regular respite time.

It is reported that 75% of visits to the doctor’s office are stress related. I am not sure of the accuracy of that statistic, but I am sure that stress takes a toll on one’s health. There is actually the American Institute of Stress, so that in itself says we are one stressed out nation! Whether your caregiving role has been for the most part a delightful and positive experience, you have to admit that there are those days… For some family caregiver’s those days are frequent and long. So what happens to a person’s body under continuous stress?

The American Institute of Stress lists the 50 most common signs and symptoms of stress How many of those can you identify with? What is the cumulative effect? How will you continue to provide care if your health fails?

Most caregiver’s plan for a decline in the person they are caring for, but few plan for care if their own health fails. 91% of the respondents’ to the 1991 report on family caregiving from the National Family Caregivers Association said “preserving your health” is a message that should be told to all family caregiver’s.

This is the importance of respite, preserving your health. Respite can be obtained through support from family and friends, or through paid care. If you have family and/or friends asking what they can do, tell them you need a break. Ask them to stay with your loved one even a few hours a week. If you can arrange for more than one family member or friend to come a scheduled time each week to give you an interval of rest or relief you will lessen your stress, and preserve your health.

Every time I ask a spouse or an adult child who is providing care, wouldn’t it be nice to just be the wife, or daughter, rather than a caregiver all the time, the response is always a resounding yes.

Respite can also be found through a private duty agency, like Visiting Angels, or adult day program. Costs vary throughout the country but the cost for a few hours a week is minimal compared to the cost of your health.

You can use the respite time however you like. Have you missed church because your loved one is unsafe alone? Would you just like some much needed sleep? Do you want to have lunch with some friends, or run errands? Would you like a long, luxurious hot bath? Do you need time to prepare for the holidays? Or, do you just want to remain at home being a family member and not a caregiver? Whatever you feel will recharge your batteries is how you should use the time.

I cannot describe the relief I’ve seen in family caregiver’s after they hire us for some respite time. They usually say “I wish I would’ve called you sooner.” Whether we provide 2 hours a week, a day or 2 a week, or care daily, we help reduce the burden and stress. Not only does Visiting Angels provide “time off”, we provide support, understanding, a listening ear, and hugs. We provide comfort and relaxation in knowing your loved one is well cared for and safe while you are out.

However you decide to get respite care, please just decide to get time for yourself. Give yourself permission to tend to your needs. Put yourself on top of your to-do list. Recognize you need to take care of yourself in order to take care of others. If you keep filling everyone else’s glass and yours is empty, eventually you will have nothing to give. Listen to the 91% of family caregiver’s who said to “preserve your health.”

I applaud and respect the millions of unpaid caregiver’s who sacrifice their time and needs every single day across this country caring for a loved one. You deserve time to yourself, and I hope you will now understand the importance to your own health.

Angil Tarach can be reached for questions or comments at visitingangelswc@comcast.net, or www.visitingangels.com/annarbor