Grieving What Has Not Happened Yet

You picture the day you will not know your grandchildren, or will not remember the songs that made you who you are. The grief arrives before the loss does. That is real grief, and you do not have to carry it alone.

Why am I grieving something that has not happened?

Because you can see it coming. Grief does not wait for the loss when the loss is expected.

One person with a new diagnosis wrote about grieving in advance for the day they would forget their children and grandchildren, forget how to dress and bathe, and lose their music, which they described as inseparable from who they are. Several people answered with the same feeling.

Caregivers call this anticipatory grief, or ambiguous loss: mourning someone who is still here. People with the diagnosis feel a version of it about themselves. It can come in waves, triggered by a song, a photograph, a grandchild's birthday, a word that will not come.

It is not self-pity, and it is not a sign that you are giving up. It is grief, and it deserves the same respect as any other.

Is the future as bad as I am picturing?

Probably not in the way you are picturing it. The worst version in your head is imagined from where you stand now.

When people imagine their future with dementia, they picture themselves as they are today, fully aware, suddenly without the things they love. That is not usually how it unfolds. Awareness changes along with everything else.

There is research behind this, covered in more detail in our article Will I Be Happier When I Forget?. The short version: across many studies, people with dementia rate their own quality of life higher than their families rate it for them, and the gap is widest on emotional well-being. That is not a promise. It is a reason to distrust the darkest picture.

What helps with this kind of grief?

Saying it out loud, keeping what can be kept, and spending today on the things you are afraid of losing.

• Say it to someone. A partner, a friend, a counselor, someone else with the diagnosis. Grief carried alone tends to get heavier.
• Keep what can be kept. Record yourself telling the stories only you know. Write letters for future birthdays or milestones. Put your recipes in your own handwriting. Make playlists of the music that matters to you, with notes about why.
• Spend time with the things you fear losing, now. If it is your grandchildren, see them. If it is music, play it, sing it, go hear it live. Fear about the future can crowd out the present that is still here.
• Mark what you are grieving. Some people find it helps to name each thing, write it down, and say goodbye to it in their own way. Others find that makes it worse. Do what works for you.
• Find others who understand. People with the diagnosis often say that talking to someone who is living it is different from anything else.

Is this grief, or is it depression?

They overlap, and both deserve attention. Grief usually comes in waves with ordinary moments between them. Depression tends to be constant.

Grief usually leaves room for good moments: a laugh, a good meal, a visit you enjoy. Depression tends to flatten everything, with hopelessness, guilt and a loss of pleasure that does not lift. Our article Is It the Dementia, or Is It Me? looks at how to tell depression apart from the disease itself.

Tell your doctor if, for more than two weeks:

• You feel low most of the day, most days
• You have lost interest in things you used to enjoy
• You are sleeping or eating much more or much less
• You are pulling away from people

What if the grief turns into not wanting to live?

Tell someone today, and call or text 988.

Many people with a new diagnosis have thoughts of not wanting to go on. That is not a reason to keep them to yourself. Call or text 988, the Suicide and Crisis Lifeline, any time. You do not have to be in immediate danger. If you are in danger right now, call 911.