Here is an excerpt from a blog I stumbled across:
“When you love someone, you have dreams for them even though you don’t realize it. And when a caregiving journey begins, particularly for someone with a long term or incurable illness, those dreams die. And you can experience a very real sense of grief and mourning, even though the person is still alive. You mourn the imagined life, the one in which things take a “natural” course and allow you to plan our your life. You mourn the loss of that person’s contributions to the family, whether it be a special recipe, or wise counsel, or them simply being the backbone of the family unit. You’re forced to let go of how things are supposed to be, and live for the moment. You constantly think about them dying. On the difficult days, you may even ask yourself if dying would be the best thing for them. You don’t want to be without them, but you can’t stand to see them living without quality of life.”
This quote is from:https://thecaregiverspace.org/mourning-the-imagined/
This is exactly how I feel on some days.
Again, I am not surprised, but I continue to be amazed at Colin’s ability to find the positive in anything and everything; and to just look for good things. When I am tired, I struggle with being positive; I struggle with being able to be grateful; and I struggle with being able to not be a thunder cloud around everyone. I know this is counter-productive. I am trying to be better at just ignoring things I can’t change, but just at the moment I am emotionally and physically exhausted. Colin is fine now, but he has not been well with UTI upon UTI, and major spasms, and pain, and tiredness; and me with not enough knowledge.
On another blog, a lady said she wished she had had more knowledge when the role of care-giver was thrust upon her. Please don’t misunderstand me, I love Colin, love to be with him, and even love taking care of him. About 90% of the time. Other times I am just too tired to be nice, and I know it puts a strain on him because it makes him feel like a burden. He is not. I consider it an honour to be in a position to help him, and I have a wealth of knowledge. I am really lucky. I received lots of training at the rehab, have access to lots of information on the web, am surrounded by friends and family who would drop everything and help if I asked, but some days are just difficult anyway.
I have struggled because I felt like I was grieving this loss, and it didn’t really make any sense, but I have come to realise that it is a legitimate part of the process. Yes, Colin is still here, he is still himself because his brain is uninjured. But there are many things that are not possible anymore. Maybe they never will be, maybe they will in time; but for now, I am grieving. This is apart from Colin’s journey, and I can only imagine what emotions he is struggling with, dealing with, and working through; not the least of which is having a wife who bursts into tears every second moment. I want to be here for him, but there are many ways in which I feel inadequate. I try. I do. I continue. I rise. I will always do so. But, I know it is also difficult for him.
I have an incredible support structure, and am gaining knowledge every day. I am sleeping. I am resting when I can. But I am tired, and I am sad. Tomorrow the sun will come out again, and I will be merry; but for now, I am content to be sad, knowing that it is ok.
Colin loves me, I love him, and it is the two of us against the world. One little step at a time.
Here are some pics that fill me with joy <3