So today had a mix of stuff. On the positive side my wife wanted to try and walk by herself, without the walker. She aced it and walked from our bed into the bathroom, back to the bed, and then down the hall to her chair in the living room. I walked backwards in front of her in the bedroom, and then the same way with the walker down the hall. I was very proud of her. Then later in the day she had a crying moment and told me that it did not take away the positives of the day. Today was new arrays day for her Optune. She always doesn’t feel well the first day of changing arrays. She also gets a headache at some point. I am getting a bit worried about her scalp. It is starting to get red, bumpy patches. She also has one red, soar area on the top of her scalp. I always try and cut away the area around that so it is open to the air. I also do my best to treat the red areas and moisturize her scalp. I am thinking I may need to take some pics and show her NO on the 19th. Last thing we want is any major infections or minor ones for that matter.
My wife has this thing about be looked at. Apparently her dad and grandma used to just stare at her and it really freaks her out when anyone does. I have a habit of looking over at her through out the day and evening. This bothers her and she will often say something to me about it. She did that tonight and it didn’t sit well with me. When I we said good night I brought this up with her. I told her that I can’t help it and I don’t know why I do it. Maybe it is because I don’t want her to feel ignored, maybe it is because I love her so much and looking at her makes me feel good. I then told her that there is also the issue that one day when I turn to look at her I will be looking at an empty chair. That made both of us cry. I said that maybe I keep looking at her because I want to take in every detail about her in to remember her. I find myself doing stuff like that throughout the day. I will be in our bedroom and will look at the bed and imagine what it will look like with a hospital bed next to it. We will be doing at home hospice. I made her a promise that I will be holding her when the time comes and that is one promise I will keep. I have OCD so some days it is very hard to not let these thoughts into my head. I am hoping to hell that that time is way out there, that is where my heart is while my head is preparing for the inevitable.
I am now off to clean the kitchen, get her meds together, and then go to bed.
Thank you for taking this walk with me.