The Stages of Grieving
Above is the booklet my dad designed to give to guests at the funeral. Click to enlarge.
In a typical description of grief, there are five identified stages that we all go through. Of course time and experience varies, but it generally looks like this: Denial and Isolation, Anger, Bargaining, and finally, Acceptance. Where does this all fit when dealing with Frontotemporal Dementia (FTD)?
My mother passed away on December 17th. My stages of grief have been: Drinking Too Much, Sleeping All Day, Talking About it to Everyone, Not Wanting to Talk about it to Anyone, Ignoring My Feelings, Crying During Commercials/When People are Really Nice to Me, and finally, Not Wanting to Throw Anything of my Mother's Away. As you can see, the nice, neat stages of grief have not really come into play for me here.
My family and I have had 7 years since my mothers diagnosis to process her disease, and ultimately her death. I have seen all of us go through the stages of grief - over and over again. There is constant wavering between denial, bargaining, anger, acceptance. I felt all of those things as she was dying. What I felt after she died, was something completely new. It was a feeling of panic of it all ending. Suddenly there was nothing to stress about, no crises, I could go to the store without wondering if she would die alone without anyone there. We were with her, holding her hands. Suddenly - there was a realization that she was finally free! What we had prayed for - the end - had come. It was a strange feeling, and was not one that fit into any grieving category. The feeling of happiness resulting from a death. The feeling that no caretaker should ever feel any guilt about.
Immediately after she passed away, I felt the need to call everyone and let them know, even though I had barely processed it myself (minutes after). Then I became immediately overwhelmed by everyone's responses. It became impossible for me to field all the condolences (hence the drinking). After the first week or so, it became easier, but it was all a strange blur, especially going through my birthday (two days after she died), Christmas, and New Years (as the funeral was January 9th, 2016). FTD does not play by any nice rules. I was reminded again and again as we trudged through the holidays, that we've had to trudge through so many other special events through the years with my mom's illness - it wasn't much different. The funeral came and went, and was very healing. But now here we are, two months after her death, trying to figure out living for ourselves.
I think its most similar to returning home after living abroad for many years. My family and I are learning how to spend our free time and using it for hobbies, reading, walks, and cooking. We are learning to not feel guilty about taking vacations. We are rewiring our brains to not react to everything with panic and anxiety, and doing all of this while missing my mom all the time. It is a more visceral feeling than I've had before. My dad and I have both had difficulty recalling memories of her when she was well, while we were caring for her. But now, I feel able to put aside her illness, and really remember her as she was when she was my mom. It is ultimately more lonely and sad than caring for her as she suffered, but so refreshing and warm being able to focus just on my mom, not her illness.
The road was long, and the journey was so so difficult. This disease is tragic and forces you to take on the caregiver role, giving up parts of yourself you feel that you won't recover. There is hope at the end of the journey - your life returns to normal, you forget what normal felt like, you take a piece of your loved one with you every second, and you start to find yourself again. This is the new road. The new journey with grief. It doesn't just go away seconds after the death. It carries on with you as you carry on. It's changed us as a family, it won't stop changing us as we continue. There's no clean timeline, or moment where you don't miss them anymore. And if someone tells you there is, they probably just think they're helping! No one knows what to say when someone special dies. The important thing is to listen to yourself, give yourself time and space. Rest and heal. Remember why you gave up so much to become a caregiver.
Thank you to Mary Catherine Stevens for designing the booklet. Thank you to Bela Modi for printing them for the funeral. Thank you to everyone who has supported us at all ever!