Transitions – Closer to the End

I have a heavy heart this week. It’s been hard to live in a state of grief for so very long. We have grieved Dave’s loss of movement in stages. We grieved his loss of speech. We have grieved when we found out that he had brain cancer, and grieved so much more. It is very hard to live in grief for me. I have never had to live this long in a grief state. While I am sad that he is leaving for what ever comes next, I am also happy that he won’t be continuing to live in what would be considered his worst nightmare.

The grief isn’t quite over yet, and I know it will come back from time to time as we do things that we would have liked to do with him, as we live our lives and the kids grow, and just when I need someone to talk to that doesn’t judge because of unconditional love.

When we first found out that Dave had brain cancer and required surgery we had a conversation about what his worst state would be. He has found the state that he was most afraid of and we are seeing the reactions to that now. Dave is no longer able to communicate with words, grunts or sounds. He is also not able to follow many directions to provide alternative responses. For example: looking at you when the answer is right or away when not right (yes and no responses). He very rarely engages in direct eye contact.

He sleeps most of the time, and stares into space when awake. Though he does watch you from time to time, most of it is spent not connected. I completely understand this and hurt for him in this state. He never wanted to be in what could be considered a catatonic or near vegetative state. I don’t think any of us would. Yet, this is where we find him and while sad I am glad to see changes.

I hurt that I can’t do anything to make him happy, though he seems to settle when we are there. I hurt because I can’t take away his pain, emotional paid, the physical can be dealt with via pain medication. I hurt because he never wanted to leave us like this, and who would. And yet, I am ready to move beyond the hurt, I am very tired of feeling this way as it’s not my normal.

We are preparing to say goodbye this week. It’s been 4 weeks since Dave was moved to Hospice care and while the initial changes were positive, I knew he would not be coming home. I had an agreement with the kids on what we would need to see to have that happen, and I knew it wasn’t going to be our reality. Hope changed when he went to care from the hope that he might recover, to the hope that he passed peacefully and without pain.

We don’t know how long he will stay in this state, but the body itself only lasts so long without food and water before shutting down.

The struggles aren’t over yet for us and will continue for a while even after he is gone. We will be left with the emotional rivers to navigate as we learn to be without him. While we have had some practice we have still been able to go and visit him. We can still touch him and feel his warmth and heart. Soon we won’t be able to do that and we will have to find ways to be okay with that.

No one signs up for dealing with the hard things in life. We never expect them to happen until we are older, much older. We don’t anticipate having to say goodbye to our other half in a permanent way. This is not a choice that we would have made, but it is something that we have to work through.

The kids are taking this in stride, as they have with the entire process. They are sad, but resilient in how they are viewing what is happening. They are able to express their fear, sadness and anger, most times appropriately. They aren’t afraid to be happy regardless of who they are around. They are still being kids. Though focusing on school work these days has been challenging as they would prefer to be doing things that are more fun…as would we all.

We are coordinating visits so that everyone can say what they need to say before Dave does leave us. If you wish to say something to him, but aren’t able to be physically present I can make that happen.

Be aware that I may not be able to post anything immediately following Dave’s passing. Those of you who are connected to me in other ways will know when this happens. We have been living a hard time for almost two years now and while the doctors told us year one would be the hardest, this last 6 months has been worse. I sit here writing this with tears running down my face because it’s not something I ever wanted to have to write about. I don’t think anyone ever does.

Thank you all for your support, well wishes, prayers, and any other positive energies that have been sent to us. We still need them as we prepare to move to the next stage of this journey.