Asking for help is not an easy thing to do once you are over the age of 10. We are taught to learn to do things ourselves, figure it out and shoulder the burden. When you are a caregiver for someone with Alzheimer’s that can be a difficult burden to carry. It is not a one-person job, no matter how much you feel you can handle on your own. At some point, it will become a 24 hour a day, seven day a week responsibility.1
Whether you have made an active decision to care for your loved one or the task has fallen to you because there is no one else, providing care for a person with Alzheimer’s is a physical, emotional, and sometimes financial commitment. A diagnosis of Alzheimer’s affects more than the person with the disease. It affects the whole family. As a person moves through the progressive stages of the disease, more care, patience, and coping skills will be required from the caregiver.2
As each family and caregivers have their own well-being, jobs, and responsibilities to look after, good communication becomes essential to make sure the needs of the person with Alzheimer’s are met, and that caregivers have the support to meet those needs.
In the beginning
Upon adjusting after the shock or reality of a diagnosis you may have suspected; caring responsibilities could seem manageable. This period could last months or even years, as the disease affects each person differently. But the end of the path remains the same. Your loved one will lose not just their memory, but also the ability to function independently.
As cognitive, physical, and functional abilities diminish, caregiver responsibilities increase. As much as you need a care plan for the person with Alzheimer’s, you need one for yourself. Grant yourself permission to take a break and ask for assistance. This involves figuring out where you can benefit from help. Getting assistance in the household, with personal care, quality of life activities, and healthcare might be areas for support. Whether allowing someone to do grocery shopping or house cleaning, or having friends and neighbors come over to socialize with, or read to, your loved one – allow yourself to take time off. Use the time to rest, relax, and restore or if necessary, to keep your own life in order.2,3
Risks to the caregiver
Caregiver stress is a real thing. Those who are full-time caregivers can experience depression, insomnia, and myriad health issues due to the fact that they do not take the time to care for themselves.4 This often leads to caregiver burnout. You may forget to care for yourself, not eating or sleeping enough; the sustained stress may weaken your immune system leaving you at risk for getting sick. Be realistic about what you can do. Recognize that the change in your relationship with the person you are caring for can be confusing. You may both experience sadness at this loss.
Talk to your family about sharing some of the responsibility. You won’t know if they will help out until you ask. People who know your loved one may be eager to assist they may just not know how to broach the subject with you.
Suggest specific tasks and match requests to interests, availability and ability. Have people visit for activities and sensory experiences like singing, dancing, reading, going for a walk or painting, working in the garden, or to provide supervised interaction with pets. Some friends may offer to bring over meals on a regular schedule or run your errands while they are running their own.
Respite care gives you a block of time as a caregiver to rest, travel, or attend to other things.
Adult day care centers
There are places in most communities that offer center-based services for people with Alzheimer’s which enable them to be social, involved in supervised activities. Some facilities are open up to 10 hours a day, and even offer services the weekends.5
Adult day centers for people with different kinds of dementia can offer a safe environment under the care of trained professionals that provide a stimulating social environment. Research has shown that keeping the mind busy helps to delay the speed of symptom progression.5 Art, music, dancing, and exercise are just a few of the usual program options. Some centers also take participants on voluntary field trips and outings to the park, for ice cream, and to concerts.
Counseling on supportive care and nutrition education may also be available. You may be able to arrange for special services including haircuts and shaves, speech therapy for swallowing, or physical and occupational therapy.
Community resources for support
Outside resources can offer practical support, helplines, advice, and even training for caregivers. Reach out to your local house of worship, civic organization, or Alzheimer’s chapter to find out how you can benefit. There are local and online support groups, educational resources, and information forums from which you can get referrals. These include:
Caregivers. Available at: https://www.mayoclinic.org/healthy-lifestyle/caregivers/in-depth/alzheimers-caregiver/art-20045847.Accessed 8.4.19.
Getting Help with Alzheimer’s Caregiving. Available at: https://www.nia.nih.gov/health/getting-help-alzheimers-caregiving. Accessed 8.4.19.
Tips for Alzheimer’s & Dementia Caregivers. Available at: https://www.helpguide.org/articles/alzheimers-dementia-aging/tips-for-alzheimers-caregivers.htm. Accessed 8.4.19.
Family Caregivers: Finding the Courage to Ask for Help When You Need It. Available at: https://amadaseniorcare.com/blog/2019/01/family-caregivers-finding-the-courage-to-ask-for-help-when-you-need-it/. Accessed 8.4.19.
Adult Day Centers. Available at: https://www.alz.org/help-support/caregiving/care-options/adult-day-centers. Accessed 8.3.19.