This is an extension of the "rant" I posted on Facebook a little while ago. I updated my mom's wall per her request and to be nice to her friends so they were able to follow along with her progress and perhaps help me out with things may it be support, cards, encouragement of financial. Below is my "rant" you may have read it on FB already.... below that is an extension of my thoughts.
Well, I am laying here awake not able to shake a comment left for me under an update for my mom. I started a blog that I try to update daily. I do this for a couple of reasons. One, we have lots of family that live far away and it's easier to let everyone know at once what is happening daily, since things change daily. Second is the over abundance of friends that mom has on her friends list. Most of whom have been super supportive and send lots of messages and thoughts. I have not slept in about 6 day's. I worry that I am failing most of the time, I worry that there is something that I need to be doing for my mom, for my kids, my spouse.... oh...and sometimes I remember that I have myself to worry about too. My phone is full of Dr's appts, 5 different people who come from hospice most day's of the week. Does mom have enough medications, is she in too much pain? Hpw can I make sure she get[s to go see my brother and his family as it's basically a goodbye trip! Do the girls need anything? A, I doing enough for them? how can I help them better... My sister in law's Nicole M Pickle and Katie Patterson have been amazing and so supportive as has my little brother Tyler (rSamantha) and my Aunt Verna. I would be lost without them to talk me through some of the really bad times. For the most part, people are super nice...then I was left this:
: " I find this very disconcerting and I am sorry that whoever is in charge of this stuff has allowed this to happen. Thinking about her a lot..... "
You can not begin to imagine how this broke my heart. I don't really understand what is is exactly you think I "let happen". I lay awake most nights, my mind unable to sleep, to stop, to let go of what I need to be doing. What I have to do tomorrow, what medications need to be given, Who she needs to visit with, talk to. Who I need to answer back to on messenger, who's' doing what. Making sure she eats and oh yeah.. I have a family too, three kids that have to homeschool, eat, see their friends, run around, go to outside classes. Still have fun!! I have not seen nor spoken to MY friends in almost 3 weeks. I worry that they've forgotten I even exist! I am so busy keeping up with all of hers. So, I am sorry you find it so disconcerting that I have "allowed" this "stuff" to happen. Feel free to move along and keep you uneducated opinions to yourself! Clearly, you've not bothered to read the blog that updates the what's, why's and how I am handling it, or the almost daily FB page updates on my mother's Shirley wall, all so YOU guys know what is happening. Albertt and I are doing the best we can, walking blindly through a new set of rules and circumstances one day at a time in a game with ever-changing rules.
I try, I do.. the best that I know how. You see the updates, the glimpse into the life that is crazy on the good day's and emotionally unbearable on the bad. Unless you have watched someone die slowly from a disease, you have NO right to judge me. Unless you see what it's like, come help Al and I balance medications with pain, with lucidity. Witness the heartache of my brother each week when we skype barely able to cope with the changes in my mom's condition that are evident on video. Unless you plan to come run errands for me, make sure my kids get where they need to be, you don't have the right to judge, to tell me that I am not doing enough. You've heard or read the updates, but you've not seen me climb into bed with my mom who's scared, hold her while she's crying and having a hard time coping, when she realizes each time that it could be the last time she is around for some milestone or holiday. you've not seen me lock myself away and have a good cry because I feel like I am failing all of those who depend on me. You've not seen my mom writing letter's for her grandkids so she can leave behind notes for the big moments in their life she's going to miss, or try to pass on her abilities to her grandkids so she doesn't feel forgotten. It's more than just medications and it's more than just "letting things happen" it's life. A messy, unfair, ever changing, maddening life that I am having to deal with daily, that I am having to muddle through and make sure all is okay with everyone else, often forgetting to do things for me like eat, sleep, enjoy the moments that are happening. So for those that will judge me, that think I am not doing enough, or not good enough. I say to you... where are you? When can I expect you to help me manage this stuff? To ease my calendar, my stress?