I’ve heard many physicians and healthcare professionals say that when they give a diagnosis of Alzheimer’s disease or related dementia to someone, they actually begin supporting two patients. Why? Because they understand that this diagnosis impacts the person who’s living it, as well as their care partner or caregiver. As the disease progresses, much of the burden and stress falls to the caregiver. The role of caregiver is not limited to just one person – usually it encompasses a group of people helping support someone living with this diagnosis.
To say being a dementia caregiver is challenging is an understatement. Within the day to day routine, you help coordinate essential activities and tasks. In early stages of the disease, this routine might look like helping with setting up medications or managing finances. In later stages, you might help more with personal hygiene like bathing and dressing. Much of your day goes to making sure the person you’re caring for has all of their needs met and is living their best quality of life. And as a progressive illness, this disease is also a grieving process, as you observe functioning changes in your loved one.
As a caregiver, it is ESSENTIAL to establish early on what caring for yourself looks like. Unfortunately, most of us neglect our own mental, emotional, physical, and cognitive health at various points throughout our lives. This can mess up our balance and make it difficult to live well. Dealing with an illness like Alzheimer’s disease makes it very easy for caregivers to push their own health needs to the ‘back burner’ and become consumed by the needs of their loved one. It’s important to have check-ins with yourself to evaluate how your own health is. Here are some example questions that might help get you in tune with what your needs are.
Am I sleeping well?
Do I feel rested?
Do I feel supported in the caregiving role?
Am I able to do my hobbies or interests?
Have I kept my healthcare appointments?
Do I receive regular breaks from the caregiving role?
If these questions help determine your own health is being neglected, consider what it would look like to take care of yourself. Here are some ideas to help get you started.
Gain perspective and support by attending a caregiver support group
Meet with a counselor
Consider hiring in-home care or adult day care help
Ask friends or family to help do something tangible (like take your loved one out for lunch)
Practice a couple of stress reduction techniques (meditation, prayer, deep breathing)
It’s important to remember that taking care of yourself does not make you a bad caregiver. There can be a lot of guilt in this role. However, by taking care of yourself, you are only helping preserve your caregiving abilities and support for your loved one.
Effingham Area Alzheimer's Awareness (EAAA) is a volunteer-run, not-for-profit organization founded to provide education and support to all families, caregivers, and people with Alzheimer's disease and related dementia in Effingham County and the surrounding area. For more information about Effingham Area Alzheimer’s Awareness, check out their website at www.effinghamalz.org. If you are a caregiver & have specific questions or situations you would like information on, please feel free to call Shannon Nosbisch at 217-663-0010 or Amy Sobrino at 618-363-8372.