Monthly Archives: December 2017

Dementia and Grief, Part II

Grief After the Death

Reactions and Assumptions

Since my mother died in September, I’ve noticed an interesting response from some people. It’s almost as if because my mother was elderly—just shy of her 93rd birthday—that her death is easily dismissed and somehow doesn’t warrant grief. “Well, she had a good long life.” The subtle message is “Don’t be sad.”

Additionally, because most people know my mom suffered from dementia over the last four years of her life, there is also an element of how relieved I must be not to have to take care of her anymore.

Reality

Well, for one thing, I wasn’t taking care of her. Mom was in an excellent care home four minutes from my home and only near me for the final ten months of her life. With the exception of six days when I was out of town and two days when I was sick, I visited her every day during that time. That was my choice. It wasn’t a burden. I only had to take her to medical appointments (admittedly not an easy task) and make decisions in consultation with the very capable staff of her care home. I was not her caregiver.

So the assumption that it is a major relief for me that my mother is dead is not at all true. As for the assumption that she had a “good long life,” I’m not so sure about that. A long life? Yes. A good life? I really don’t know how she would assess her life. From my point of view, she was unhappy for most of her adult life. That makes me very sad. I deeply hope she viewed it differently when she was still capable of remembering it.

Caregivers’ Grief

Listening to actual caregivers who are grieving a loss, I don’t hear any profound relief that they are no longer on call 24/7 and can rest now, make plans, go places, and “have a life.” They are mourning all those years that their loved one was dependent upon them instead of being an active spouse, parent, sibling, or child. They are mourning the loss of function whether it was physical, cognitive, or both on behalf of the loved one and also for themselves in relationship to their loved one. And now, for the most part, they are alone and deeply grieving.

Complicated Grief

We are going to grieve so many things when someone dies. We grieve that person, but there is so much more to grieve than just the disappearance of a particular person from our lives.

We grieve the loss of a good relationship, or perhaps we grieve that the relationship wasn’t what we hoped it would be.

We may mourn that the lifetime of our loved one may have been a disappointment to them, unhappy overall, or beset with misfortune.

We may mourn how that person negatively affected our own life. Life and relationships are complicated.

And, unfortunately, every death brings up the death of anyone else important to us, turning the current grief into layers of grief. It can be overwhelming.

Oh, and then there’s that pesky reminder of our own mortality and vulnerability because we know there are other people in our lives who we could lose at any time.

Responses to Grief

So, to state the obvious (which somehow does not seem to be obvious to everyone), death is always a blow. Don’t try to make it not a blow for someone else. Statements, such as They are in a better place, or At least they are not suffering anymore, or They had a good long life, or Well, now you can get on with your life are not at all consoling. In fact, just the opposite. These statements come across as dismissive and minimizing at best.

What is helpful are comments such as:
It’s always hard to lose a parent no matter how old they are.
I haven’t lost a spouse (or a sibling or a child or a friend). I can only guess what you must be going through.
I’d like to have you over for a cup of coffee or tea.
And the ever safe I’m so sorry for your loss.

To read other related posts, click here for Dementa and Grief, Part I (Pre-Death), click here for Happy Birthday to You: Birth and Death, and click here for Guilt in Caregivers.

Dementia and Grief, Part I

Dementia and Pre-death Grief

When a loved one has dementia, grief starts long before death. It seems that you lose that person bit by bit as memory is lost bit by bit. Every step down that road is a loss. They are not the same person. If it’s a parent, first, they don’t remember your adulthood. Next, your childhood is forgotten. Then, they might not remember you at all.  If it’s a spouse, a sibling, or a friend, your entire relationship may end up forgotten.

What Exactly Is Lost?

When my mother was hospitalized after her accident, it took us a while to discover how much of her memory was lost. She was disoriented, delusional, and hallucinating in the hospital. It was clear she didn’t know how to eat. It was also clear that she didn’t remember she was too weak to stand because she kept trying to get out of her hospital bed.

Somewhere along the way, as Mom stabilized and started to heal, we realized she had lost ten years, including the eight years she lived with my sister and brother-in-law. Because that was not an easy time for my sister, the fact that Mom couldn’t even remember it was a big blow.

Through conversations over the next month or so, we discovered that Mom didn’t remember at least the past thirty years. Putting it into selfish terms, that is over thirty years of your life that your parent doesn’t remember. Given that I was sixty-one at the time, that was at least half my life, almost all of my daughter and son’s lives, and all of my two grandson’s lives. Wiped out.

I became afraid to ask what, if anything, Mom remembered before that. I still don’t know if she remembered anything of our childhood. There were very important life events in her adult life and in ours that I never had the courage to ask about. I didn’t want to distress her.  I didn’t want to distress myself.  We just lived largely in the moment and in her memories of her own childhood.

Extended Grief

So, depending on how fast the dementia progresses, there’s months or years of loss and grief before death. With a physical decline, a person is for the most part still there, still present. With dementia, the brain—that which makes a person that person—is progressively lost. It’s a very strange disease, distressing and confusing for the patient, frightening and full of grief for the helpless family. It is different from anticipatory grief.  It is active prolonged grief.