Ask Miriam – January 2021
Dear Miriam,
My wife is 65 years old and is in the final stages of Young Onset Alzheimer’s disease. She is currently bedbound and on hospice, which provides a nursing assistant several times a week for bathing and personal care. She seems to be comfortable, although she doesn’t talk much anymore. I am worried about what I am going to do when she passes away. I already miss her so much. My parents are elderly, but still living and fairly independent, so I have never had to deal with this before. I don’t know the first thing about what to do when someone dies.
—Searching for Answers
Dear Searching for Answers,
When someone has Alzheimer’s, there are so many losses along the way throughout the course of the disease, and the final loss of the relationship you have had for all these years can be very hard. You may even feel that in some ways you are prepared for it. It can be difficult to imagine what your life is going to be like once you are no longer caregiving. In addition, dealing with the details of death can be incredibly stressful. Below are some suggestions that might make it a little easier for you to cope with the immediate aftermath.
Know that anything that you can do in advance is helpful. For example, make sure that legal paperwork including any wills or trusts are up to date. It is also fine to choose a mortuary or funeral home beforehand and discuss future burial/cremation arrangements with them. Once someone has died, there are a number of people to contact: first, the hospice agency, and then relatives, friends, the Social Security Administration, and life insurance companies, as well as financial professionals, such as an accountant or lawyer. The funeral home/mortuary will prepare and file the death certificate and we recommend you order multiple certified copies.
The most important thing is to be kind to yourself and give yourself some time. Many different feelings may come up for you: grief, anger, regret, and even relief. You may find yourself wondering how you might have done things differently. Know that this is completely normal. Try to maintain a daily routine as much as possible and stay connected to the people in your life. You can also memorialize your loved one, whether that is lighting a candle, writing a letter, saying a prayer, or making a donation in her name. Loss and change can be frightening and overwhelming but joining a bereavement support group will help you to feel less alone.
Reach out to Alzheimer’s Los Angeles for more information about bereavement support groups, as well dealing with the death of a loved one, by calling our Helpline at 844-435-7259 or find us on our website at alzheimersLA.org. You may also email Miriam with questions or concerns at askmiriam@alzla.org.