When Ed, my soul mate of 30 years, developed Alzheimer's, I sank deeper into despair each day. I thought a lot about grief related to loved ones with dementia. How you lose them little by little, but they are still there. I was thinking about how many years the grief may last before they finally die, and then another kind of grieving begins.
Death is typically a clear starting point for grief, and it's clear that eventually there will be more or less an end to it. But with dementia, loss comes in bits and pieces and drags on and on for many years before the loved one even dies. It is understandable why I felt overwhelmed by the prospect of so many years of grieving.
1. Grief Over the Loss of the "Previous Person"
When a loved one is showing clear signs of dementia, that person begins to fade away, resulting in feelings of loss and despair. And there are so many losses over time. These may include things such as negative personality changes, not being able to have meaningful conversations, and, in many cases, the person with dementia not even recognizing loved ones.
This type of grief continues as a loved one declines little by little. It seems that every time a caregiver is able to come to terms with the person's reduced level of functioning, they get even worse. One way to deal with these continuing losses is to learn to let go of the "previous person" and learn to love and cherish the new person just as he or she is. This process, which can be very difficult to master, must be repeated over and over as the disease advances.
My personal experience, as I describe it in Come Back Early Today was that I could reach Ed again when I began to interact with him as though he were a toddler. I took him little stuffed animals, which he absolutely loved. Then I started to play with him and the stuffed animals, and I invented other little games to play with him. We both enjoyed it immensely. My pain at losing the "old Ed" was significantly decreased as I saw how much joy I could bring to my "new Ed."
2. Anticipatory Grief
Anticipatory grief is that which often occurs when one is expecting a person to die. It typically has the same symptoms as grief after any other death. To deal with this it can be helpful to try to shift your focus from the anticipated death of the person to trying to enjoy together the time that's remaining. It's important to try to think of all the ways you might be able to improve the person's quality of remaining life.
3. Grief When the Person Finally Dies
Grief when a loved one with dementia dies can be more difficult than that for other types of death. One reason is because the caregiver has usually already been grieving the loss of the person for years. It's difficult to endure the seemingly endless grief.
When a person with dementia dies, their loved ones typically experience the normal stages of grief -- denial, anger, bargaining, depression and, finally, acceptance, although these are not always experienced in the same order and not everyone goes through each stage. Some people get stuck in one stage, which can lead to complicated grief (see below).
Research shows that 72% of people who have a loved one with dementia are actually relieved when the person dies. This can lead to incredible feelings of guilt. It's important to realize that feeling relief when a person with dementia passes away is normal and that there's no reason to feel guilty about it.
I was able to work through my grief after Ed's death in part by writing a book about my 30-year relationship with him, focusing primarily on the years when he was demented. The project started out as a way to remember Ed and honor our life together. But mid-way through the process, it became meaningful to me also as an exciting creative endeavor, helping me resolve my grief.
4. Complicated Grief
Complicated grief, also referred to as unresolved grief, is that which does not lessen with time, or is so intense it significantly interferes with one's life. It may appear as major depression, lead to substance abuse, cause thoughts of suicide or take on the symptoms of post-traumatic stress disorder. It may also become chronic grief. Surprisingly, complicated grief may also manifest itself as a complete absence of mourning. Complicated grief usually requires professional help from a physician and/or psychotherapist.
5. Moving on
Grief must be fully experienced before you can move on. You need to allow yourself time to grieve. It's important to take good care of yourself physically and emotionally during this time. It will also help to realize that with time your pain will lessen and you will be able to move on.
At some point -- when you feel you're ready -- try to begin "returning to the world." Take up a new hobby or go back to one that lapsed while you were caring for your loved one. Spend more time with the family members and friends you may have seen less in the preceding months or years. Some people also benefit from doing volunteer work.
Much to my surprise, one day I suddenly realized that I'd completely forgotten the third anniversary of Ed's death, which was a month earlier. That's when I knew my grief was largely resolved.