Dealing with the devastating effects of Alzheimer’s disease takes its toll on everyone involved. In spite of overwhelming demands, families generally provide excellent care for their loved ones. But no one can really be prepared for all the ups and d
It is not always obvious when to ask for help, what kind of help to ask for, where to find it or how to know it is making a difference. That’s why the AARP Andrus Foundation produced the booklet, “Steps to Success: Decisions about Help at Home for Alzheimer’s Caregivers.” The booklet is available to download at www.andrus.org/caregiving or by calling 800-424-3410 and requesting publication D17623.
Information in the booklet is based on surveys of people providing in-home care for a loved one suffering from Alzheimer’s. Their insights and experiences provide basic guidelines for deciding whether you need to get help, and what kind of help to seek.
The caregivers interviewed stressed that being a family caregiver is not about doing it all yourself, but instead, it is about making sure your loved one’s needs are met. Bringing in outside help can provide a fresh perspective and conserve the caregiver’s strength and positive attitude.
When to seek help
There is no evidence that using outside help reduces a family’s involvement in care. Services add to, but do not take away from, the care given to your loved one. If you’re not sure whether home care can help you, ask yourself these questions: Do you have regrets about giving up some things — or everything? Do you have serious medical conditions that you don’t have time to treat? Are your family and friends less available or less dependable now? Do you worry that you don’t have a life or anything to converse about with friends or family? Do you get mad, resentful or frustrated about your “lot in life?” If caring for your loved one is causing you to answer yes to these questions, it is worth taking action and exploring the options available.
Finding the right care options
A new person in the home or any change in routine may be scary and threatening for someone with a memory disorder. If you believe there will be resistance to accepting outside help from the person with Alzheimer’s, try introducing home care workers as people who are there to help the caregiver, not the loved one needing care. Remember, the decision to seek help must be yours, based on your judgment of what is right for both of you.
There are many home care options to consider, including companions, homemakers, skilled nurses and adult day programs. Knowing your own strengths and weaknesses as a caregiver can help you make a decision. Ask yourself what would best support your abilities to provide care for your loved one at home. What help does your loved one need that you can’t provide, such as exercise or help with bathing?
Take into consideration whom your loved one is most likely to trust, which chores you’d like to delegate to outside help, and what times would be best to have help. And finally, consider how much money you can afford to spend to get the help you need. Keep in mind that as the disease progresses, your home care needs may change and you may need to take advantage of additional help from family, friends or other resources.
How to find the help you need
One resource AARP recommends is the Alzheimer’s Association. Its nationwide network of chapters offers a broad range of programs and services for those with Alzheimer’s, their families and caregivers. To find your local chapter, call 800-272-3900 or go to www.alz.org.
Other possible sources of information are members of any local Alzheimer’s support group, your family physician or your local Area Agency on Aging. Some families also have had success by placing ads in neighborhood newspapers or church bulletins.
Be aware that home care and day programs have several different names, which can be confusing. For example, “respite” care will provide a person that comes in when a break might restore some balance in your life, but is not necessarily repeated on a scheduled basis. Knowing what kinds of resources are available can help you feel less isolated. Stay organized by developing a file system so you can keep track of the people and agencies you’ve contacted to better identify your needs and the needs of your loved one.
When meeting home helpers, look for key characteristics: does this person seem compassionate, gentle, calm and respectful? Observe the reaction of the helper and your loved one: is there fear and uneasiness or reassurance? In addition, ask whether the helper is willing to follow household rules (such as no smoking, television or telephone use).
Once you’ve found a compatible helper, remember to allow time for you and the person working with you to learn each other’s ways and develop a trusting relationship.
Families have changed over the last several decades. More women are in the workforce, families are having fewer children, and there are fewer siblings to pitch in and care for a family member at home.
Home care has become a viable option for providing expertise and rest for caregivers as well as enhanced care for the loved one with Alzheimer’s. In every study of home or respite care, early use of appropriate, regular help benefits families. Family caregivers do better if they can look forward to a regularly scheduled break and can use their time off for non-routine, pleasant activities.
Recognizing the need for help is the first step. Resources that meet your specific needs are available and can make the difference between taking a break and breaking down.
The AARP Andrus Foundation provides knowledge and education through research that helps find solutions to the challenges of aging and approaches to retaining independence and dignity throughout life. Established in 1968 as a memorial to Dr. Ethel Percy Andrus, the foundation is a 501(c)(3) organization affiliated with the AARP. For more information, visit www.andrus.org.
Courtesy of ARA Content
