I frequently hear in support groups that guilt is present because the primary caregiver, usually a spouse, has lost their temper and raised their voice to a yell. This often happens when one has repeated the answer to the same questions multiple times. This frustration is compounded by the exhaustion of having to think about everything you say at the same time as taking over all the responsibility of running a household.
Full time caregiving of someone with a dementia is not an easy road, but there are steps you can take to avoid burnout.
Step 1
Guilt should be reserved only for when you intended to hurt someone. Almost 100% of the time, the guilt that is felt in the scenarios mentioned is because of burnout or plain old tiredness and not real guilt. The feeling you have is most often associated with not enough self-care. Instead of feeling guilty, take the steps to find extra help, so you can take care of yourself. This can come by way of hiring someone or using a “memory care day program”.
Step 2
Don’t try to reason with the person for whom you are caring. The executive functioning needed for reasoning is impaired with most dementias very early in the process of the disease. This is the very first of the dos and don’ts of how to communicate with someone with dementia. If you do not have a copy of these tips, email me and it is yours! You can also read a few tips in this blog post. Joining a local support group may also provide a means of finding out what has worked and not worked for others.
Step 3
Assess your challenge. When does it happen? What are you doing? What has changed, if anything, in the environment? Physical illness often produces challenging behaviors. Any new or sudden onset of a problem should be brought to the attention of your physician.
Step 4
Ask for help. Almost no one can do this type of 24/7 care alone – it does take a village. When you ask for help, clarify your needs in three steps:
- Tell the person what the challenging behavior is, and how it is affecting you.
- Demonstrate respect to the possible “helper” by stating you know how busy they might be, or whatever you know about their life stressors.
- Make your specific request for help.
Step 5
Self-care often takes external permission because that old friend you call “guilt” raises its ugly head when you think of doing something without your partner/spouse/parent. You can get permission to take that trip or even return to your old passions of painting, golf, and lunch with friends, from others in a support group, an Aging Life Care Professional, a clergy member, or maybe a friend who knows you well.
In a recent support group, one of the participants was lamenting something close to one of the scenarios discussed here. What that person said was, “What if this were Jesus” how would care be delivered? This brought the participant to say, I need to hug and kiss my family member more. All the participants agreed on this strategy as worth a try.
Affirmation: “Love is tough, and I care for myself in order to love others.”
Resources:
The Connected Horse: A free four-week program using horses for both the caregiver and the dementia person. Current locations include Orinda, CA, Pleasanton, CA, Calistoga, CA, and Minden, NV.
Adult Day Health Care Programs (California): Community-based programs providing an organized day program of health, therapeutic, and social services.
Aging Life Care Consultants: An expert can help coach you, or assist you in creating a road map for care of your loved one. Hourly fees apply for these services.