Tag Archives: grief

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.

Happy Birthday to You: Birth and Death

Birth and Death  

Soon my husband and I will be making the 7-hour drive upstate to visit my mom, sisters, and brother-in-law. This visit is timed to celebrate Mom’s birthday. She will be 92 years old.

I am leery of this event because people tend to die after birthdays as well as after the very important winter holidays. That being said, I’m not sure that my mom is even aware that her birthday is coming up or that it would mean much to her even if she were. I started mentioning it to her last month, and I know my siblings have been doing the same as we make plans for the family get-together and celebration. However, Mom forgets. I’ve never had her ask me what month it is, just what day of the week, and since she can’t even remember her last name, I don’t know if she knows the month of her birthday any more. We can take less and less for granted as time goes by.

Unfortunately, there is another reason I am feeling superstitious. A few years back one of my sisters asked me how long I thought Mom would live. I don’t know why, but I responded, “92?” Ever since, I have geared myself up for this coming year to be the one in which she dies. It’s magical thinking with no basis in rational thought, but there it is looming in my brain. So it shouldn’t be surprising that I have spent more time than usual lately thinking about her death and what we will do.

Planning for Death and Grief  

Mom belongs to the Neptune Society, so there is no wondering about burial versus cremation, but what about the rest? Will we have a memorial service? Who would come? Who is left? Would we speak? I have nothing to say. (Don’t be snarky! I mean at a service. Obviously I have a lot to say or I wouldn’t be writing here on this blog where I seem to be more open and honest than anywhere else. But I digress—)

There is no church any more, so no minister to call on. Will we simply gather as a family? Have our own private wake? Stare at each other in exhaustion and dismay that here we are at another weird parental death? Drink with dedicated determination until we are either completely anesthetized or finally completely emotional and vulnerable? God, I hate that—being emotional and vulnerable. I like to hold myself tightly together and not break down in front of anyone. Maybe I don’t have to worry. At this point, my bitterness would probably block any access to grief.

But we all know that doesn’t work in the long run. The grief, like truth, is going to find its way out even if it’s only in bits and drabs over the course of years. Much healthier to use the rituals that accompany death to express feeling. That’s what they are for. But I’m not a healthy griever. Too much anger. Too much bitterness.

So I’m thinking that I need to have some discussion with my siblings while we are there as to what we plan to do when Mom does die.

A Birthday Present from Immigrations  

On a lighter note (Whiplash warning! Probably should have worked up some kind of transition here.) Mom has received an early gift. Or, rather we did on her behalf. Immigrations sent her renewed registration card! ( Click here to see the Immigrations and Dementia post.)

There was no in-home interview after the herculean effort we went through to obtain one. The card just unexpectedly showed up in the mail. I’m not complaining, mind you. It’s just that I was certain that all the additional documents I uploaded in September would not be the end of it. I fully anticipated that Immigrations would either reject the photo I took of Mom, fail to open the password-protected letter from her doctor even though I sent the password to them, or demand some entirely new set of requirements. Then, we still had the interview to schedule and get through.

I don’t know what happened. Maybe they just gave up or took one look at her photo and realized they were beating a dead horse. Pffft. Doubt it. They probably just moved on to other prospects to torment. Whatever the reason, we were stunned and relieved to be done with the whole ridiculous process.

So, yippie! A little bit of sunshine in my thundercloud of a post.

For a related post regarding thoughts about impending death, click here to read “Guilt in Caregivers.”