The toll of caregiving
Caregivers regularly put the needs of their family members ahead of their own needs — even to a dangerous extreme. Caregivers have shared with me how they skip meals, forget their own medications, work while seriously ill, and even delay their own treatment. Many of these caregivers feel that they have no other option, often because they can’t afford paid help and lack a support network. However, as we know from Bob’s touching story, some caregivers are hesitant to accept help for a number of non-financial reasons.
Caregivers are at risk for depression, anxiety, sleep problems, substance abuse, and stress-related physical health problems, including elevated blood pressure and compromised immunity. Half of caregivers experience emotional distress and a quarter suffered from clinical depression (source). “Researchers have discovered that Alzheimer’s caregivers had a 63% higher mortality rate than non-caregvers. In fact, 40% of Alzheimer’s caregivers die from stress-related disorders before the patient dies (source).” Your health has a huge impact on your ability to provide care. Declines in the health of the caregiver, not the patient, is the primary reason people with dementia are institutionalized (source).
The majority of caregivers wouldn’t want to give up their role in caring for their loved one. There’s no secret trick that will make caregiving stress free. The big question is:
How can caregivers deal with their emotions and still maintain an identity?
Everyone is different, but here are some tips with what’s worked for us. Share your experience in the comments and we’ll update the post.
Remember who you are
You had a life before you were a caregiver. Your priorities have changed, but don’t give up everything. You’re more than what you do every day. Find small ways to maintain your identity, even if it’s scaled down significantly. Surround yourself with things that remind yourself of who you were, who you are, and who you want to be.
There’s a world outside and life is better when you’re a part of it. Facebook can help you track down friends you’ve lost touch with. A short phone call with a friend can have a huge impact on your day. Sometimes it can help to skip talking about the day to day — especially when your life feels like an endless to-do list — and delve into deeper topics instead.
Stanford researchers found that exercise helped caregivers sleep while decreasing depression, anxiety, and pain (source). It doesn’t have to be a big thing — you can work out at home, while cleaning, or do something low-impact like taking a walk or a bike ride.
There are small steps you can take to eat better. Don’t worry about making big changes overnight. Maintaining your health isn’t selfish, it’s part of what caregiving entails.
Ask for help
Serving as the sole caregiver for one or more people is unsustainable. As isolated as you may feel, you’re part of a community. Take one step each week to recruit people for your caregiving team.
Connect with other people
Own your emotions. We’re here to provide a safe space so you can share your struggle. None of us are perfect — we can share what we’re going through and how it makes us feel without judgement. Our community can help you find solutions or just let you vent.
Write it out
Journaling is a great way to sit down and take stock of your life. Getting negative thoughts on paper can stop them from bouncing around in your head — and help you focus on the good things. It can even help reduce the symptoms of PTSD. We share weekly journal prompts in our email newsletter.
Know what’s important
Sometimes everything feels like an emergency. You’re so busy reacting that you don’t have time to think about what really needs to get done. Take a step back and decide what tasks don’t need to be at the top of your priority list.
Know what you can change
You know what triggers your stress and anxiety. Some things can’t be changed, but a few can. Try to identify a single trigger you can reduce. Focus on small things. They may not have a big impact right away, but it all adds up.
Caregiving is incredibly demanding. We all lose our cool sometimes. You’re doing your best and that’s good enough. You are constantly forgiving those who don’t live up to your expectations — extend that courtesy to yourself. You deserve it.
Monitor your health
You’re already going from one doctor’s office to another — you certainly don’t want to add more to the list. You know how delaying testing and treatment can dramatically alter your long term prognosis. Track your health. Your health is important, too.
Get professional help
Depression and anxiety have serious consequences. Medical professionals can provide you with counseling, behavior changes, and medication tailored for you. It’s never ‘all in your head’ — your mental health has a major impact on your physical health and many ‘mental’ illnesses have a documented physical component. The Anxiety and Depression Association of America has information on treatment options.
Originally published at thecaregiverspace.org on June 12, 2015.