End of life planning for individuals with Alzheimer’s or other dementias involves many important discussions and key steps that you should begin to consider as soon as your loved one receives the diagnosis. While it may seem more natural to take it one day at a time and avoid thinking about the inevitable challenges that progressive, fatal diseases like Alzheimer’s and other dementias bring, planning ahead can spare you a lot of guilt, stress and heartache in the end. Follow these five key steps so you can honor the wishes and memories of your loved one in the way he or she would want you to.
- Discuss early. Don’t wait until it’s too late to begin discussing your loved one’s end-of-life wishes. According to the 40-70 Rule®, if you’re 40 or your parents are 70, you should begin to have those difficult conversations about their preferences for care and end-of-life issues. Most people tend to avoid such sensitive subjects for a variety of excuses—“It’ll just upset Dad,” or “I’m waiting for the ‘right time’ to bring it up.” However, it’s best to broach the subject when your loved one is still of sound mind and you have plenty of time to plan for the road ahead.
If your loved one is beginning to show the warning signs of dementia or has received a diagnosis of Alzheimer’s, you’ll want to have these discussions as soon as possible. With the right approach and these end-of-life discussion tips, you can tactfully ask your loved one about his or her five wishes and have a productive conversation. Be sure to get what you discuss down in writing (see number 2 below).
Discussing your loved one’s wishes ahead of time can also help prevent conflict among family members when it comes time to make decisions on your loved one’s behalf. Instead of arguing about what you think Mom or Dad would have wanted, you’ll be able to eliminate the guesswork and honor your loved one’s wishes in confidence.
- Establish advance directives. Advance directives are legal documents that allow a person to detail his or her decisions about end-of-life care in advance. Family members should help their loved one establish advanced directives as soon after a diagnosis of dementia as possible while the person still retains decision-making abilities.
There are two types of advance directives:
- Living Will. A set of written instructions specifying preferences about the types of life-prolonging medical treatments a person does or does not want to have. According to the Alzheimer’s Association Ethics Advisory Committee, there is little, if any, benefit to treatments that attempt to extend the life of someone in late-stage Alzheimer’s. The most advisable treatments are those that make the individual as comfortable and pain free as possible. If your loved one with dementia wishes to follow that advice or specify any other preferences, he or she will have to document those wishes in a living will in order for family members and doctors to honor them.
- Health Care Power of Attorney. A legal document that appoints a trusted individual to make decisions for your loved one with regard to medical care, and it becomes effective when the person with dementia can no longer communicated effectively or coherently with others. Learn more about appointing a health care power of attorney and what medical wishes they cover.
- Share and preserve memories. Preserving and enriching important family memories through activities like scrapbooking, telling and recording stories, continuing traditions or simply spending time together will ensure the contribution your loved one with Alzheimer’s has made to the family heritage is not lost. You can find ideas and resources for capturing and leveraging memories for a loved one with Alzheimer’s disease or other dementias by visiting 2017.helpforalzheimersfamilies.com.
- Plan for care. It’s important to understand the progressive nature of Alzheimer’s and the characteristics of its final stages so you can plan accordingly for care. Those with end stage Alzheimer’s disease typically exhibit cognitive abilities similar to those of a young child. They may also lose basic motor skills, likely becoming bed-bound, completely dependent on others, and require 24/7 care.
When deciding on the best plan of care for your loved one with Alzheimer’s, you’ll need to take into account that person’s final wishes, your family’s caregiving commitment, finances, and, of course, your loved one’s condition. A broad spectrum of care options is available for individuals with end stage Alzheimer’s ranging from in-home care services to hospice care.
- Let yourself grieve. Losing a loved one to Alzheimer’s disease, a process often known as “the long goodbye,” is an emotional experience for everyone. It may begin with the realization that Dad “isn’t the same” anymore, or it might hit you when Mom fails to recognize you as her loving child and treats you as a stranger.
Sadness, anger, frustration and grief are all natural feelings to have and need to be expressed—in a healthy way. Talking with family members, friends, members of an Alzheimer’s support group, or a professional counselor can help you work through the difficult emotions you may experience.
Taking care of yourself is also key to managing emotional stress. Make it a priority to get enough sleep, exercise, eat right, and set aside time to do something you enjoy that can take your mind off the source of your frustration or grief.
While facing the end of a beloved family member’s life will never be easy, you can feel better prepared and more in control of the circumstances by planning ahead for the emotional, physical, financial, legal and logistical challenges you may face as your loved one heads into the final stages of Alzheimer’s or other dementias. When you’re prepared, you’ll be able to better focus on positive memories of your loved one and cherish each moment you have together.