Care for the Caregiver

What Is at Risk?

It is reasonable to assume that we are all fairly tough, resourceful, determined, and resilient people, but still, caregiving is a challenge like no other. In fact, an oft-cited 1999 study found that caregivers have a 63 percent higher mortality rate than non-caregivers. According to Stanford University, 40 percent of Alzheimer’s caregivers die from stress-related disorders before the patient dies.

This is not meant as a scare tactic, but perhaps, a sobering wake-up call. Caregiving is a very, very challenging role; so demanding that people often die trying to fulfill that role before their loved one that they are caring for passes.

How Is this possible?

You might think that is an unusual situation and declare that those are unique circumstances. But truly, these are not unique circumstances, and in fact, the more we look into this, we find our story to be like so many others. We start off out of love, dedication, familial loyalty, and other factors, where we commit to ourselves and others that we can do whatever it takes.

What happens is the demands of this role most often build over time, allow us to acclimatize to some degree before greater demands arise. It is like the story of “How to Boil a Frog.” You don’t throw a frog in boiling water, or it will jump right out. Rather, you put the frog in lukewarm water and then bring the heat up gradually. The is exactly what happens to us; we gradually take on more and more, often without some clear moment of recognition that it has become too much.  

This is further compound by the “can’t see the forest for the trees” phenomenon; where we are so overwhelmed with caregiving, it is very difficult to step back and make an objective assessment of what is going on.

Additionally, we typically are unwilling to ask for help. Many caregivers feel ashamed to ask for help from others. They feel they must assume the full caregiver burden as though asking for some assistance may be a sign of weakness or coping out on our responsibilities. The caregiver, in turn, starts to feel guilty that they aren’t providing the best care that they could.

Stress Factors

In the end, this load, in the form of stress, begins to take its toll on us. Here are some of the ways that most often occurs:

• Emotional stress.  A large number, in fact, 22% of caregivers report that their health has gotten worse as a result of caregiving. Caring for a chronic condition like dementia or Alzheimer’s disease seems to cause the most emotional stress. 
• Lack of privacy. A family caregiver often reports feeling a lack of privacy in the home once they’ve taken on a loved one, especially in a smaller space. It can be difficult to set boundaries to get away from constant interactions.
• Depression and isolation. A family caregiver is often at high risk for depression. Oftentimes, caregiving duties take up so much of their time that they no longer maintain social connections outside of the home. And sadly, it is times like these that you find out who your true friends are, and for one reason or another, people that were in your life seem to disappear when you get wrapped up in an intense caregiver situation.
• Managing time. Caregivers often find they have less time for themselves and other family members. They often spend so much time on caregiving duties that they end up sacrificing the things they enjoy, like hobbies or vacations. Or, they have trouble balancing work schedules around caregiving.
• Priorities change, shedding tasks. Obviously, there comes the point where you can not do everything or even think about some tasks, and so they fall by the wayside. Landscaping falls apart, home maintenance slows down or stops, repairs pile up, and the house may even become damaged with things like dry rot.
• Physically overwhelming. The physical demands of caregiving can also take a toll when the duties include lifting and helping with mobility. But this also just appears with the never-ending work that manifests in utter exhaustion that then results in lowered immunities and getting sick more often.
• Sleep deprivation. Lack of sleep can be a big issue for a family caregiver, as often the loved one’s sleep-wake cycle can be mixed up, not to mention that the stress of caregiving can cause sleep issues for the caregiver. Sleep deprivation can take a huge toll on a caregiver who is already feeling the strain of being burned from both ends.
• Loss of Job. Caregivers often find that they have incrementally worn themselves out (emotionally and physically), and as a result, they are not performing as well as they had been in their job. The caregiver usually doesn’t even know that this is occurring because it happens so gradually, but it is not uncommon to find themselves without a job at the most inopportune time.
• Safety Concerns.  Depending on the nature of your loved one’s challenges, there can be numerous risks, such as cutting oneself, breaking things around the house, falling down a staircase or in the bathroom, starting a fire on the stovetop. And in some cases, the loved one may even want to cause physical harm to themselves or you. Other times, loved ones try to ‘escape’ running away and getting lost. This creates a panicked search for the caregiver.
• Stress with neighbors and authorities.  With some dementias, there can be reduced levels of inhibitions, such as going out into the neighborhood with little or no clothes or even going to the bathroom out in public. There are even some situations where the authorities get involved, and if there are injuries observed and questions asked, sometimes loved ones said that it was the caregiver’s fault. At that point, you will be arrested and questioned on the spot.

Stress Relief

That is a pretty daunting list of challenges, so you would naturally ask, “What can you do to at least reduce these stresses?” A lot of it is up to us to approach this challenge a little differently, along the lines of “working smarter, not harder.” What is meant by that is that we have little control over our loved one’s challenges, but we do have a lot of opportunities to control how we experience those challenges and how we go about addressing them.

• Serenity Prayer. Most of us are familiar with at least the concise version of the Serenity Prayer: “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” This concept is essential to your survival. You have to make peace with whatever is going on with your loved one. You will suffer far less emotional toll when you stop questioning why this has happened or why someone is now behaving in the manner they are. Just accept it at face value; once you do so, it is one less battle you have to fight in your head all day and night.
• Maintain a perspective.  Utilize friends, family, and even support groups to get a perspective on what you are going through. You are too close to it and going through too many emotions to be able to clearly assess what is happening, both with your loved one and yourself as a caregiver. You need this help so you can make adjustments that are in the best interest of your loved one and yourself, and so you can gauge when it is too much, and you absolutely have to seek help.
• Give yourself permission. It may sound fun, but caregivers go into a 110% selfless caregiving mode and are so focused on fulfilling that role that they can not seem to give themselves permission to do the things that are critical to their own survival, and therefore, to the ongoing care of their loved one. The two related areas of permission that you must allow yourself are 1. asking for help, lots of help, and 2. doing whatever you need to do to take care of yourself as well.
• Seek help. Reach out to friends, family, support groups, churches, adult daycare, and anywhere else you can think of and ask for help. Of course, this is difficult because it is humbling and makes you feel like you are failing, but in truth, it is just the opposite. By recognizing you need help and having the courage to ask for it, you are taking charge of a nearly impossible situation and doing what you have to in order to survive.
• Take care of yourself too. Related to seeking help, which gives you some time and space, is taking care of yourself. You need to be able to recharge, both emotionally and physically. This means things like quiet time, a nice relaxing bath, a walk in the woods, reading a book, going to the movies, and some soul-nourishing time, away from caregiving duties, such as a dinner with friends or family. 
• Rethink your options.  There may come a time, where you may need to surrender and acknowledge that not only are you not physically, emotionally, or even technically able to perform the full caregiver role. You need real help, and lots of it; help that is trained, and equipped with the proper tools and facilities. The cost of an appropriate long-term care facility may be frightening, but you can address that from two angles. You may be able to get financial help in ways you had not been aware of (e.g., medicare, veterans funds, social security disability insurance, your church, friends, and family). Secondly, you can explore possibilities that may dramatically affect the cost of care, such as care in Mexico.

These suggestions are not a cure by any means. There is no doubt about it, your role as a caregiver is going to be very hard, but getting a perspective on it and taking charge to a large degree will make the difference between this role taking a very significant toll on you or possibly even being your complete undoing.