Strategy: Moving Through the ‘Long Good-bye’

Alzheimer’s disease is often referred to as “the long good-bye.” Long before your loved one actually passes, you may be experiencing feelings of loss—loss of the person you once knew, loss of companionship, loss of what could have been. Moving through the grieving process while your loved one is still living can help you cope with the caregiving journey and prepare you for the inevitable.

  • Allow yourself to grieve. Know yourself and know your loss. Develop coping tools and strategies.
  • Pamper yourself. Now is a good time to indulge in simple pleasures that calm your stress.
  • Let others pamper you. If friends and family offer help, say “yes.”
  • Write about your emotions. Keeping a journal of your thoughts can help you vent them and help you document and evaluate your progress.
  • Take good care of your health. Eat nutritious meals. Drink plenty of water. Engage in good physical activity. Get ample rest.
  • Accentuate the positive. Counterbalance negative thoughts with reminders of positive things, including your loved one’s remaining strengths.
  • Take advantage of religious affiliation. Grief can often open the door to greater faith and hope.
  • Indulge in laughter. Enjoying a sitcom or reading the comics can be the best medicine.
  • Take comments with a grain of salt. Even the most caring person can say something insensitive without meaning it that way. Try to note the person’s intent, rather than any awkward sympathy about your loved one’s condition.
  • Set boundaries. Be open and honest with yourself and others about what you can do, what you need and what you don’t need at this time in your life.
  • Allow yourself to enjoy your favorite music. Music is a proven healer.
  • Volunteer. By helping others, you’ll take some of the emphasis off your own situation.
  • Get professional help if needed. Loss can lead to physical and mental illness that need medical attention.

FAQ (to AFA’s social services team)

FAQ: Explaining Death

Q. How do you explain the loss of a loved one to someone who has Alzheimer’s disease?

A. Whether or not you should tell someone with Alzheimer’s disease about the death of a loved one is a personal decision, but there are a few issues you should be aware of. Individuals with Alzheimer’s disease are typically confused, disoriented, struggling with constant memory loss and, to make matters even more complex, may lack proper coping mechanisms. Individuals who do not have the appropriate coping mechanisms to deal with this type of bad news may act out by becoming agitated or angry. They might not ever properly process this information and may continue to grieve over the loss for an indefinite amount of time.

Deciding how to proceed largely depends on your family’s ability to deal with the situation. While some families decide not to inform their loved one about a death, others divulge the information once and then distract the individual with Alzheimer’s disease anytime he or she brings up the deceased person.

The same also applies with taking an individual with Alzheimer’s disease to a funeral. Depending on the person’s current mental condition, the person may or may not understand why he or she is at a funeral even if you offered an explanation a few minutes before. Although the person may register the sadness associated with being at the funeral, he or she may repeatedly turn to you for an explanation. If this is something you feel you can handle during the procession, then you may decide to have the person attend. If, on the other hand, you feel it would be too difficult, then consider having the person memorialize the deceased in a more intimate surrounding.

Whether you chose to inform your loved one or not, you should also know that it is common for family caregivers to experience feelings of guilt or believe they are being deceitful by keeping such information from their relative. The important thing to remember is you are acting with that person’s emotional well-being in mind.

FAQ: Brain Donations

Q. How do I donate my loved one’s brain to science?

A. Researchers worldwide are counting on people to donate their brains—both diseased and healthy—to science upon death in order to unlock the mystery of Alzheimer’s disease.

The process of brain donations is getting easier thanks to a growing number of brain banks or tissue resource centers. Currently, there are about 65 in the United States, according to the International Brain Banking Network; these brain banks collect, store and distribute tissue to neuroscientists worldwide.

Research institutes studying neurodegenerative diseases like Alzheimer’s also have brain autopsy programs. Many federally-funded Alzheimer’s Disease Centers (ADCs) across the country offer brain donation programs. Simply call up the investigators and ask whether they have studies that accept brain donations for postmortem research.

The typical protocol is straight-forward: A brain donor will be asked to sign a consent form and then be given information for next of kin or a legal representative so this person knows what to do with the deceased body. Brain donors can also make their intentions known in a living will or advanced directive.

When a loved one passes, the family calls the designated phone number, and the receiving institution or a courier service picks up the body for autopsy. Researchers must receive the brain generally within three to eight hours of a person’s death if the tissue is going to be frozen for use in biochemical studies, or within a day or two if it is targeted for other studies.

As is the way with brain autopsy, the process is not disfiguring. The brain is removed through a small incision in the back of the head. The research institute coordinates the autopsy and the delivery of the body to the funeral home after the tissue is removed.

There is no charge for a brain donation and often the medical examiner, pathologist or researcher will share the information from the autopsy with the person’s family.

Click here to read the article, “Your Brain: A Priceless Donation to Science.”