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Alzheimer’s Caregivers Need to See This

Image from starlightcaregivers.com.

Alzheimer’s Disease is an illness that causes people to lose the ability to remember, think, and use good judgment. Over time, as the disease worsens, those affected will have trouble with self-care and will need caregiving assistance; for those aging in place, a family caregiver is often involved.

Family caregivers typically experience mixed emotions. Sometimes, taking care of the person with Alzheimer’s makes a caregiver feel a sense of fulfillment because he or she is providing care and comfort for a loved one. Other times, it can be overwhelming and extremely challenging. To assist caregivers, who may or may not realize how much they have taken on, the National Institute on Aging has published “Caring for a Person with Alzheimer’s Disease–Your Easy-to-Use Guide.” This 106-page guide includes nearly everything you need to know to  cope with the changes and challenges you will experiences as a caregiver for someone with Alzheimer’s.

Click on the links below to go to the web version of the guide containing more information:

  • How Alzheimer’s changes a person: Because Alzheimer’s causes brain cells to die, the brain works less well over time. This changes how a person acts. You will notice that he or she will have good days and bad days.
  • How to communicate with a person with Alzheimer’s: Communication is hard for people with Alzheimer’s because they may struggle to find words or forget what they want to say. Caregivers often feel impatient because of this. The guide offers details and coping strategies.
  • How to tell family members and friends: When you learn that someone you love has Alzheimer’s, you may wonder when and how to tell your family and friends. You may be worried about how others will react to or treat the person. While there is no single right way to tell others, the guide lists some things to think about.
  • How to protect the person from fraud: People with Alzheimer’s are more likely to become victims of financial abuse or “scams” by dishonest people. There are numerous telephone, mail, e-mail, and in-person scams targeting seniors and people with dementia. Most scams are committed by strangers and organized criminals.  Sometimes, however, the person behind the scam is a “friend” or family member.  The guide offers signs that the person with Alzheimer’s is not managing money well or has become a victim of a scam or financial abuse.
  • How to keep the person with Alzheimer’s safe at home: People with Alzheimer’s get more confused over time and often start wandering away from home, often trying to return to the “home” they remember, which is their childhood home. They also may not see, smell, touch, hear, and/or taste things as they used to. As a caregiver, you can do many things to make a home safer for a loved one with Alzheimer’s.
  • How to stop the person from driving:  As the caregiver, you will need to talk with the person about why he or she needs to stop driving. Do this in a caring way. Sometimes a caregiver may need to get the person’s physician involved.  Understand how unhappy the person with Alzheimer’s may be that he or she has reached this new stage.
  • How to keep the person active and healthy: Being active and getting exercise helps people with Alzheimer’s feel better. Exercise helps keep their muscles, joints, and heart in good shape. It also helps people stay at a healthy weight and have regular toilet and sleep habits. You can exercise together to make it more fun.
  • How to adapt activities for someone with Alzheimer’s: Early in the disease, people with Alzheimer’s may still enjoy the same kinds of outings they enjoyed in the past. Keep going on these outings as long as you are comfortable doing them. Plan outings for the time of day when the person is at his or her best, and keep them from becoming too long. Cooking and baking, being around children and pets, and even doing household chores can also make someone with Alzheimer’s feel loved and appreciated.
  • How to get help with caregiving: Some caregivers need help when a loved one is in the early stages of Alzheimer’s; other caregivers look for help when the person is in the later stages of Alzheimer’s. It’s okay to seek help whenever you need it. Asking for help shows your strength, and it means you know your limits and when to seek support. The guide provides details on how to build a support system, informational resources, direct services, and government benefits.
  • How to find the right place for the person with Alzheimer’s: Sometimes you can no longer care for the person with Alzheimer’s at home, as it may not be possible for you to meet all of his or her needs. When that happens, you may want to look for another place, such as a nursing home, for the person with Alzheimer’s to live. The guide offers suggestions and criteria for finding the right place for a loved one with Alzheimer’s.
  • How to plan ahead: A diagnosis of Alzheimer’s is life-changing for both diagnosed individuals and those close to them.  Generally, the earlier someone with Alzheimer’s plans for long-term care needs, the better.  But it is never too late to begin the process of Alzheimer’s Planning, also called Lifecare Planning, Medicaid Planning, or Medicaid Asset Protection Planning.  Medicaid Planning can be initiated by an adult child acting as agent under a properly-drafted Power of Attorney, even if the person with Alzheimer’s is already in a nursing home or receiving other long-term care.

Where to go for Help

Did you know that there are at least 44 million Americans are caring for aging parents or other relatives and friends? According to AARP and the National Alliance for Caregiving’s “Caregiving in the U.S. 2015,” the typical caregiver performs unpaid care for 21 hours or more each week, provides care for an average of five years and expects to continue care for another five years, and has an average household income of $45,700 (causing tremendous financial strain on the family). Caregivers of people with Alzheimer’s disease can draw on many sources of help for caregiving and financial support. Here are some places that provide general support and advice for Alzheimer’s caregivers:

  • The Alzheimer’s Association offers information, a help line, and support services to people with Alzheimer’s and their caregivers. Local chapters across the country offer support groups, including many that help with early-stage Alzheimer’s. To find support groups in your area, call 1-800-272-3900.
  • The Alzheimer’s Foundation of America provides information about Alzheimer’s caregiving and a list of services for people with Alzheimer’s. Services include a toll-free hotline, publications, and other educational materials. Contact the Foundation at 1-866-232-8484.
  • The Alzheimer’s Disease Education and Referral (ADEAR) Center offers information on diagnosis, treatment, patient care, caregiver needs, long-term care, research, and clinical trials related to Alzheimer’s. Staff can refer you to local and national resources, or you can search for information on the website. The Center, a service of the National Institute on Aging, can be reached at 1-800-438-4380 or www.nia.nih.gov/alzheimers.
  • The National Institute on Aging Information Center offers free publications about aging in English and Spanish. They can be viewed, printed, and ordered from the Internet. Contact the Center at 1-800-222-2225 or visit www.nia.nih.gov. Also, check out their extensive library of videos for Alzheimer’s caregivers.
  • The U.S. Administration on Aging offers a comprehensive listing of caregiving resources.
  • The Family Caregiver Alliance offers a calendar of events and trainings for caregivers.

Caregivers: Take Care of Yourself

Caregiving can be both emotionally and mentally taxing, and can easily lead to “caregiver burnout” (read our blog post about caregiver burnout and how to minimize the stresses involved with caregiving). Please encourage your family caregivers to take advantage of services that offer respite and support, and thank them for their strength, courage, and commitment in providing long-term patient care.

At Farr Law Firm, P.C., we recognize that caring for a loved one strains even the most resilient people. If you’re a caregiver, take steps to preserve your own health and well-being.  Part of taking care of yourself is planning for your future and for the future care needs of your loved one with Alzheimer’s.  To make an appointment for a consultation, please contact us.

Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.

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