Today has felt like a very tough day. Lots of emotions flying around my head, and worries flying around my brain.
I read about a phrase I had not seen before. Anticipatory grief. This is where we grief before death when we are aware that someone is going to die soon. Marie Curie have a great article describing it:
https://www.mariecurie.org.uk/talkabout/articles/what-is-anticipatory-grief/271278
Normal grief can have the following stages, as developed by Elisabeth Kubler-Ross, in her 1969 book On Death and Dying:
Denial
Anger
Bargaining
Depression
Acceptance
The process can look different for different people, and circumstances can make us cycle through the stages differently. However, this is triggered by the death of the loved one - a car accident, a heart attack.
Anticipatory grief will have a trigger - usually the diagnosis - and the feelings experienced after that can be just as intense as grief as we normally see.
There are some conflicting emotions that we deal with however, and this is where I find myself this week. Obviously we are hoping our loved one doesnt die, but on the other hand are coming to terms with the fact that they have been told they will. Almost planning for life after their death.
This does happen alot with me (I'm not sure about the children). I desperatly do not want my wife to die, and want her back as she was, but also sometimes want to be able to move on. I have a feeling that the disease we are dealing with is holding me back, and these are thoughts that make me feel very guilty and exceptionally angry with myself.
That is one reason I am relieved to find out about the thinking around anticipatory grief. So relieved I was in floods of tears in a toilet at work. The concept explains much of my mental conflict, and the ongoing battle to clear my head.
Couple that with constantly being on edge, constantly worried about is going to happen next. Is that pain in her side an organ not working properly? Is the lack of appetite a precursor to something? This is really tiring.
I find the only time I feel happy is when I am in the car on my own, listening to music. The worries go, because I dont have the visual reminders in front of me. This is like a min break from everything.
We experience similar when I am with the children on my own, again there are no visual reminders of the worry, and we can be normal is only for a minute. This is the life I want, laughing and joking around, and I feel so guilty for thinking that, knowing that my wife will most likely not be able to be involved in that.
What is recommended for these feelings? Well I seem to have stumbled across one, of looking after yourself, having some relaxation. Otherwise talk to someone, and this is where I fall down. I am terrible for bottling things up until they are too late, and not telling people. I use the phrase I'm OK in response to questions of how are you all the time. And truthfully, most of the time I'm not OK. I need to take the advice and talk to someone.
I found the articles I have read today interesting, as they did describe my feelings very accurately. I just wish though that someone had a magic bullet that would make all this go away. None of the articles contained that secret.