My Birthday is over and I'm relieved! I went and visited my Dad and he had a gift for me and he was obviously thrilled to give it to me
My Dad is sentimental and often gives gifts of things he has, he's done that since we were kids and it is always exciting to see what treasure we will get. A good friend had picked out a card and used our nicknames on it and wrapped the gift and I am so grateful for her helping my father do that. Gift giving is important to him, especially when it comes to his kids. The look on his face, all lit up with a huge and beautiful excited smile were the best gift he could give me and I made a point of thanking his friend for helping make that happen. I got him a bit drunk and had a toast with him and then we spent an watching and listening to our favorite youtube music and videos. Lots of tears with our special songs "My Little Girl" and "Happy Together" but I alternated emotional songs with funny videos.. he loves the dinosaur farting one and the cow one "I like to moo". It was a great visit.
I know that my father doesn't want me to be depressed, of course, and he doesn't have a clue that I am. Hiding it from him is easy! Because my father isn't married I have taken on the role that a spouse would and my involvement in his care is huge. Now that he is in Hospice and not living alone or with me, I have more freedom to work but the daily visits and emotional impact on me severely affects my life. There is no way to avoid it. The further he progresses the harder it becomes. He relies on me to manage his care and now that we are getting to a point where I have to make more decisions for him it only makes it more important that I stay on top of things. Hospice and my father are a large part of my life and my visits are the highlight of his day. I can't take that away from him, especially now when he lays in bed all day and watches tv and watches the clock looking forward to my visits.
It is what it is and I can't change it. ALS is not beating me even though some days it feels as though it is. That only makes me human! Being a caregiver is hard, I know you all understand that, and you know that the fear of losing your loved one soon is what keeps us going from one day to the next at times, keeps the smile on our face for our PALS and on bad days, knowing we brighten up their lives is what gets us out of bed. ALS IS winning but my father is putting up a great fight and I am his biggest supporter. I feel like the wife of a boxer who is losing the fight, in the wings, trying to be a good cheerleader and stay strong while inside I feel every blow all the way into my soul. Yet I know all I can do is smile when he looks my way...