The all-too-common disease called Alzheimer’s comes with a roller coaster of stages and emotions. It is beyond tough to watch your loved one slowly fade away, while still living. The experience is complicated by an emotion known as “anticipatory grief,” a kind of mourning that occurs before rather than after the death of a loved one. Often endured by both the person with Alzheimer’s and their family, anticipatory grief is confusing and emotionally draining. But it also offers a break in the clouds: the time needed to express your love, resolve relationship issues, and ensure material possessions (like homes, cars, bank accounts) will be distributed properly after your loved on passes away.
TV journalist Anderson Cooper recently discussed anticipatory grief in an episode of his podcast, “All There Is,” a weekly discussion of grief with prominent people who have coped with loss. Cooper shared his extended experience of saying farewell in the last years of his mother, heiress and artist Gloria Vanderbilt, and his nanny, who had been like a second mother to him. He also interviewed film director Kirsten Johnson, who lost her mother to Alzheimer’s and is now watching her father succumb to this illness. She and her father are processing their anticipatory grief in her movie, “Dick Johnson Is Dead,” which celebrates his life while mourning the loss of the father she knew growing up.
Cooper wrote a book and made a documentary with his mother before she died, and Johnson’s film includes a mock funeral. Each is grateful for being able to resolve experiences with their parent before it was too late. That is one of the critical differences between conventional and anticipatory grief. Alzheimer’s disease is often called “the long goodbye,” but the term can apply to any end-of-life illness. Knowing how to manage the emotional and practical issues that arise with anticipatory grief can help you say farewell in the most meaningful way.
Good Days and Bad Days
The two experiences are similar in some ways. Both are marked by sadness, which may lead to depression and anger. Some days are hard, when we can only think of how much we miss our lost loved one’s former personality; some days bring happy memories, as we recall joyful times or important lessons we may have learned from them.
People experiencing anticipatory grief naturally think ahead to their loved one’s death, but this can often lead to feelings of guilt, even if they do not want death to happen. Some days are filled with hope for recovery; others, with despair at the expectation of the worst outcome.
Signs of anticipatory grief include depression, anxiety and mood swings, which can manifest themselves in fatigue, insomnia and physical pain. You may feel angry, which is doubly painful if your loved one also is lashing out in anger at their condition and perceived fate. You may struggle to manage everyday tasks and events, and you may have loss of appetite, “brain fog” and other physical ailments.
Worst of all is the pain and loneliness of caring for a beloved parent who doesn’t recognize or remember you. This is one of the hardest things Johnson had to deal with when her mother was living with Alzheimer’s disease.
How Anticipatory Grief Can Help You Cope with Emotions
Despite all those grim-sounding symptoms, experiencing anticipatory grief can have emotional and practical benefits. It can help both the person with Alzheimer’s and their family members focus on what is most important to them and resolve any issues that have plagued their relationships. It can help the diagnosed individual find meaning, achieve closure, and feel at peace. For family members, it offers the same opportunity for closure and resolution, even if the loved one is no longer lucid or does not understand what is happening.
How Anticipatory Grief Can Help You Deal with Estate Matters
Sometimes it takes a serious medical diagnosis to get people thinking about inheritance matters. EVERYONE has a need to settle legal and financial affairs to ensure assets are appropriately distributed, both after their parents’ death and eventually, their own deaths. This involves the creation of an estate plan with an estate planning attorney and is best done while people are still cognitively aware. Of course, as the disease progresses, your loved one will have moments of lucidity. Estate planning consultations and documents can sometimes be created during these moments of lucidity, so long as the diagnosed individual understands what document they are creating, can express who their beneficiaries should be, and has capacity to sign such estate planning documents without the presence of their family members.
How Anticipatory Grief Can Help Better Everyone’s Quality of Life
Experts recommend that you and, if possible, your loved one make the most of this final time together by following these steps:
- Focus on quality of life. Try not to dream of recovery and focus instead on smaller, achievable goals like just having a day with no emotional or physical setbacks. A walk in the park or around the block, enjoying an ice cream cone together, or just letting your loved one tell stories from their childhood. These small feats can make a world of difference in everyone’s emotional state.
- Form a support network. You cannot do this alone; no one can. Join together with others who understand what you are going through and help each other. Plan to keep calling on your support network after the loved one passes away.
- Do not wait – do it now. As painful as this time may be, you have been given an opportunity to help yourself and your loved one part in a loving, emotionally supportive way. Say what you have to say to each other. Realize that past mistakes probably cannot be erased, but you can forgive each other and move forward.
- Resolve legal and financial matters. Work with a trusted estate planning attorney to ensure that property and other assets will be distributed correctly, according to the loved one’s wishes and to protect their interests. Nothing makes the grieving period harder than an estate fight between survivors.
No matter when they occur, grieving periods are fraught with emotion that can weaken your ability to make rational decisions. OC Estate and Elder Law can help you through this period and guide you towards an estate plan tailored to your particular family situation. To arrange a free phone consultation, contact us at (954) 251-0332 or firstname.lastname@example.org Our attorneys are fluent in English, Spanish and Russian.