Depression among caregivers run high: help is needed
by Carol Bradley Bursack, Editor-in-Chief
From my experience communicating with caregivers, I've found that one of the top issues they face is depression. Most caregivers are loving people who start caring for their parents (or other loved ones) because life hands them this responsibility. They step up to the plate because they are needed. Often, more emotion than thought goes into the process, which is good and generous, but has pitfalls.
Caregiving generally becomes part of our lives in one of two ways. The first is a sudden change in a loved one's health. I experienced that with my dad after surgery threw him into dementia. A stroke can do this, as well. My family experienced that type of sudden care need with my uncle, who had a series of strokes.
The other type is the "sneaky" type, which is what happened with my mom. She needed some assistance at home, then got so she needed me there every day, then needed a personal alarm and eventually needed to join my dad at the nursing home. This snowballing care, which is quite common to caregivers, happened with my mom over the course of about 15 years.
Another type of sneaking up is sheer numbers. My family caregiving journey started out with my uncle needing help. Then it was Dad. For a time, Mom could assist some with their needs. However, years - plus the effects of caring for Dad - took a toll on mom and she eventually needed care as well. I call this the domino effect, in that our elders start declining, or "falling" to the point of needing care, one by one. Eventually, the whole situation piles up on one caregiver until he or she is in danger of being emotionally crushed.
My caregiving journey provided me with seven elders over the course of two decades - with a total of five at one time. Do I regret taking care of all of these people? No. Should I have taken better care of myself at the time? A resounding yes.
But it's so darned hard. Okay, go ahead. Ask me. If a caregiver should take care of him or herself, just how does one go about that? I get it. I still don't know how much better I'd be at asking for help now than I was during my peak caregiving years.
I do, however, know this. There is much more support for caregivers now than there was when I was carrying the biggest load.
- We have online support such as articles and the blog on Eldercarelink
- We have far more agencies available to provide help and we have more awareness in government - local and national - so more resources are provided through our state Web sites and other groups such as Area Agencies on Aging and The National Family Caregiver Support Program.
- Most states are on the 2-1-1 program where you can call to learn about services the same way you call 9-1-1 for help.
- Many faith communities provide people to come and sit in for the caregiver so she or he can have some time without the need to be on call.
- In-home care is a wonderful, flexible arrangement. Find a good agency and work out a program for blocks of time. Yes, it costs money. So does psychotherapy. One spousal caregiver I know has Wednesday afternoons blocked out with a special agency caregiver his wife loves. This man, in his 80s, needs this break from caregiving and his wife loves "their Jennifer." Jennifer provides respite for the caregiver and socialization for the care receiver. She's been described by him as a Godsend.
- Adult day care is another great option. Like in-home care, ADC does cost money, however both of these options are now covered by many long-term care insurance policies. Adult day care provides peer socialization for the care receiver as well as activities and oversight, while the primary caregiver has time alone, works at a paying job or runs errands.
The main idea with respite care is that caregivers can burn out. They love their care receiver. They "would do anything" for this person or these people. So, the caregiver keeps on giving and giving and giving.
However, gradually, a nasty blackness can creep over many caregivers who don't get a break. They feel stuck. Life will, in their eyes, always be the same. They can't get out to meet friends. They can't do errands without taking their care receiver with them. They can't even get a hair cut without worry. What if he wonders off? What if she falls? What if he leaves the stove on and burns down the house? What if? It's all too much to think about so the caregiver isolates with the care receiver. Neither has much of a life.
The long, dark tunnel seems to have no end. Caregivers can start to resent the person they love. It's not really the person, it's the circumstances, but those fine points are too difficult to grasp once depression sets in.
When this burnout gets serious, and even some respite from the list above isn't enough, it's time for you, and for your care receiver, to look for a good assisted living center or nursing home. Yes, there are good ones out there. If depression is overtaking you, you can't possibly be the effective caregiver you want to be. Also, you are at risk for other health issues and even suicide. This is not what your care receiver wants for you, even if he or she can't put thoughts and feelings into words.
Whether you get an in-home agency to come in a few hours a week, or need to look at an assisted living center or nursing home, you are not giving up on your loved one. You are still the main caregiver. You are just getting help.
Get help for yourself, for your sake and for you loved ones - all of them - before you feel depression set in. Don't set your loved ones up for guilt if you get sick and die. They will adjust and so will you. You can't be a martyr to their care. They don't want that. Please look for help while you can still think straight.