Don’t Forget About the Caregivers: National Caregivers Month

There’s no doubt – North American society heavily depends on family and friends who are unpaid caregivers. An estimated 1 in 5 adults in the United States provide care or assistance to a loved one or friend who is ill or unable to care for themselves. Given the population in the U.S. is over 327 million, that number comes to a staggering 65,440,000 people who are unpaid caregivers. Compare this to the almost 3 million registered nurses in the country.

Almost one-third of these unpaid caregivers provide care for at least 20 hours a week. Most (53% to 68%) are women and most caregivers are between the ages of 45 and 64 years. The type of care varies according to individual needs, but over half of caregivers give personal care, which can include bathing, toileting, and other hands-on physical tasks.

Caregiving affects the caregiver

The caregiving burden is a high one. Many caregivers must cut work hours, decline promotions, or stop working altogether in order to have the time to provide the necessary care. This is particularly difficult for those who come from low-income backgrounds or who have other obligations, such as raising a family.

A study published in 2010 found that caregivers to people who survived a critical illness, like septic shock, are at risk of developing mental health issues. Almost 70% of unpaid caregivers say they have high levels of depressive symptoms. And caregivers for children who were critically ill report higher than usual rates of post-traumatic stress disorder (PTSD), along with physical and mental symptoms of distress, such as headaches, fatigue, and anxiety, according to another study published in 2018.

November is National Caregivers Month, an important time to place a spotlight on the millions of people who are caregivers. Recognizing their work and providing the caregivers themselves with support is essential, for if the caregivers can no longer function, many people would be admitted to long-term care facilities or left to try to cope on their own, even if they are unable to.

Caregiving around the clock

This year’s theme for National Caregivers Month is Caregiving Around the Clock, an apt description for most caregivers. Unless relieved by someone else, caregivers are always on the clock. When caring for a sepsis survivor, there is the added stress of wondering if a new infection will set in and if so, will this cause another bout with sepsis? And there is the feeling of aloneness. Many caregivers feel alone, but if you add to this the mysteriousness of an illness like sepsis and post-sepsis issues, the loneliness is amplified. On paper, a sepsis survivor may seem like he or she is fine, but reality may be much different. Sepsis survivors can be left with long-lasting or permanent physical and cognitive disabilities. Some can’t return to work or school. Some can’t even return home.

Here are 10 tips for caregivers, based on a list made by the Caregiver Action Network:

1- Seek support from other caregivers. It may seem obvious but it can be easier said than done. Whether you attend in-person group support, you meet informally with other caregivers, or you lean on people on-line when you have some spare time, this support is vital. You need to know you’re not alone, and other caregivers may have tips and tricks to make it easier on you and the person you are caring for.

2- Take care of your own health. When you fly, the flight attendants tell you that in case of emergency, you put on your own oxygen mask before you help someone else. The same principle applies here. You can’t care for someone if you don’t take care of yourself. That means squeezing in some exercise time, eating well, seeing your own doctor, and following any treatment plans you need.

3- Accept offers of help. Most people don’t know how to help, but they want to. So, when someone says, “Let me know if I can help,” take them up on it. Have a list of tasks you’d like someone to take over when possible. The tasks could be as simple as picking up a quart of milk or running a few errands, right down to spending some time with your loved one so you can have time to yourself.

4- Learn how to communicate effectively with doctors (and others on the healthcare team). Caregiver Action provides this helpful video to help you understand the best ways to communicate so you get your messages across to the healthcare team and you understand what they are saying to you.

5- Take breaks. Respite care, care provided to your loved one so you can take a break, is essential. Respite care can be informal – a friend or other family member replaces you for a while – or it can be formal. You can hire a professional caregiver for a day or a few weeks. Whichever you choose, it’s important. You need to take breaks, in order to take care of yourself. Remember the oxygen? This is your oxygen mask.

6- Watch for depression. Depression can be caused by the stress of caregiving. The feeling of being alone, helpless, is very real. Depression is more than feeling blue. It’s a feeling that can overwhelm you, cause loss of interest in what is around you, make it difficult to complete tasks, and it can make it so it feels that nothing can be or will be right. If you suspect you are getting depressed, speak with your doctor. There are treatments available.

7- Embrace technology. If you’re not used to using technology, this suggestion may be a bit scary, but this is a time to realize that technology can be your friend. New apps for your smart phone, equipment like nanny cams, and call alert systems are just a few tools available to you. Ask other caregivers what they use to help make their lives a bit easier.

8- Be organized. Not everyone is naturally organized, but this is one area where extra effort should be made because it will make your life easier in the long run. Whether you keep track of everything on the computer or with paper and pen, make sure you have all necessary information at your fingertips. This way, if there’s an emergency, you can provide all the documents or information the medical team needs.

9- Get your legal affairs in order. If you’ve not done so already, look into how to get a power of attorney, a will, a living will, and any other documents – financial and legal – you may need to make decisions for your loved one if the need arises.

10- Look in the mirror and give yourself credit. It may not seem so during as you perform your day-to-day activities, but you are special. You are doing the best that you can, given the tools and time you have. We all have bad days, days when we think we’re not good enough or we’re not doing enough. Take a moment to remind yourself that you are doing the best that you can.

If you are caring for a sepsis survivor, you are not alone. If you need help, contact your local healthcare facilities, the hospital where your loved one was treated, or your family doctor and see if there are any support groups or other forms of support available to you. There are online support groups on Facebook and Sepsis Alliance has an active Facebook group where caregivers can learn more about sepsis and surviving sepsis.