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Caregiver Burnout… Are you at risk?

You may have been providing care for years to someone who’s mental or physical health is deteriorating or, because of something unexpected such as a stroke or accident, you have been thrust suddenly into hands-on care. You may be feeling exhausted and isolated, completely caught up in caregiving tasks, with no life of your own. Rather than receiving support from family and friends, you may feel pressure.

Family caregivers of those who suffer from dementia face ongoing challenges in safeguarding their loved ones. Dementia is a broad term for significant decrease in memory or other mental or language abilities. Some 60 to 80 percent of dementia cases are related to Alzheimer’s, and other causes include stroke, thyroid and metabolism disorders, and vitamin deficiencies.

A federal study found that the annual cost of a dementia patient each year in America is $41,000 to $56,000, and often the financial and emotional burden is carried by family caregivers. Because a dementia patient eventually can no longer handle self-care or manage basic daily activities, family caregivers typically shoulder the care load, trying as long as possible to keep their loved one living at home. Caring for a loved one with dementia or any ongoing illness takes extra strength and patience and can physically, emotionally, and financially drain a family caregiver.

You wonder what you should do now.

Your first responsibility must be to care for yourself; doing everything you can to prevent caregiver burnout, illness, and injury. Your ability to stay healthy and to have a healthy life after caregiving depends on caring for yourself now.

Your second responsibility is to protect your care receiver, providing a safe and loving environment. At some point, you may have to consider facility care such as an assisted living facility or nursing home. It is good to be prepared for this possibility ahead of time.

Don’t let your care recipient bully you or guilt you into being their sole caregiver. I recently heard someone tell me their mother said the reason they had children was to have someone to take care of them in their senior years. We need to assist and support our senior loved ones, but we also need to have our own lives.

Caregiver burnout is something you may not notice, but people you know may notice changes in you and express their concern. Here are some signs of caregiver burnout:

  • Feeling helpless or hopeless
  • Overreacting to minor nuisances
  • Feeling constantly exhausted
  • Decrease in productivity of work
  • Withdrawing from social contacts
  • Scattered thinking
  • Feeling increasingly resentful
  • Being short-tempered with care receiver frequently

If you are not in a crisis but think you may be at risk of caregiver burnout, you may find relief by using some of the ideas listed below:

Emotional Support

Support Groups. Even though it seems that you have no time it is even more important to attend. Some people attend more than one group. Participants in your support group will understand how much the inability of some family members and friends to be with you and your care receiver now hurts, how hard it is to remain patient with some of your care receiver’s behaviors, and how frustrating trying to "navigate the system".

Sharing Your Emotions Can Provide Relief. Write out your anger or frustration in a journal. Reading and sharing caregiver stories on internet forums may help you feel less isolated and alone.

Counseling. Consider counseling to deal with the natural feelings that come with caregiving. Among these are anger, frustration, sadness, anxiety, and guilt.

Respite Care. Respite care means taking a break from caregiving, usually because someone else is taking care of your care receiver for a few hours, days, or weeks. At this stage you must get away from caregiving at least half a day once a week (more often, if possible) and take longer breaks when needed.

Adult Day Care. Adult day care programs offer close supervision, lunch, snacks, and excellent activities suited to various levels of participation: lounging in recliners, playing board games, singing, or playing indoor balloon volleyball.

Home Services. There are several reasons to ask for personal care/home services as part of respite. Hiring a professional home care agency to provide a caregiver will help to insure a caregiver is available on a regular bases. Besides the fact that you can leave the house when the caregiver is there, you will be relieved of some personal care such as bathing, toileting, and dressing.

Short Term Stay in a Community. There are many senior communities that offer short term respite stays for an individual if their family needs some time away. It’s also a good way to try the community out to see if it’s the right place for your or your loved one.

Overcoming Resistance to Outside Help

Some care receivers are very resistant to allowing outside help and trying a respite care solution such as adult day care. To get support services needed by care receiver and caregiver alike, it helps to know some strategies for fostering cooperation. Some suggestions regarding how to overcome resistance are below:

Involved. Involve the person needing help in developing and carrying out care plans.

Explain your needs openly. Sometimes you need to ask the older person to do things to make your life easier just as a favor to you.

Trial Run. If the older person disagrees or won’t cooperate with the plan, suggest a trial run or a time limit – this puts off the final decision until he or she has had a chance to try the plan.

Professional Interaction. Enlist the help of an independent third party who is a professional such as doctor, lawyer, or care manager in convincing your care receiver to accept services. Many people resist or ignore requests from spouse or child while listening to a person seen as an authority.

Statement of Need. Try statements such as, "Mom, do it for me" or, "I would feel so much better if I knew that you had ________ (an emergency alert response button to call for help after a fall, home-delivered meals, someone to help you take a shower safely, etc.).

Keep Your Independence. Showcase a service that will make it possible to remain independent longer. For example, attending an adult day care program may be feared as much as going into a nursing home. The reality is that it is more like going to a club that provides fun-filled daytime activities with the added benefit of being able to remain in the home longer. A visit to see what's going on there may help.

Triggering Event. If a triggering event such as a minor fall takes place, use that as the time and reason to add services that may prevent a major catastrophe.

Safety Decision. If all else fails and the care receiver is endangering himself or herself, you may have to make a decision that he or she opposes. If it seems necessary for you to take control of an incapacitated person in a way that goes beyond what you have in place now, you may need to apply for Guardianship. Guardianship is a last resort that can often be prevented by planning for incapacity.

The Family Caregiver Alliance (http://caregiver.org/caregiver/jsp/home.jsp) is a great resource providing newsletters, advice, support groups and other information for caregivers.

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