We are almost 2 weeks past my surgery and already I can see that what I thought might be a story, isn't really much of a story at all. Because I was the primary caregiver for our daughter, and because her disability requires so much staying on routine, I thought caregiver changes from myself to Denise would be much more stressful for us all. Generally, at least for Anna, that has not happened. In fact the opposite is what happened. Anna's transition to sleep at night, some of her behaviors, basically many of the things that were problems in the past have not totally blown up and totally disrupted our home like I thought would happen. Things are not perfect but things haven't got to hell either. Granted Denise's life has gotten a little more hectic, but Anna has for the most part been just fine. I don't know what else to write about.
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Time for an update, I'm just doing this as I can. As far as Anna and Denise are concerned I believe things have gone much better than I had originally thought they would. Anna's behaviors, her morning routines and transition to bed at night; for the times when it is just Anna, Denise and I in the house I think it's going well. Nights are actually better, heck I'd say from an overall standpoint nothing is worse. Denise might not agree with this and I plan on having her add her own post to this blog shortly. Night time has always been an issue. The problem(s) that I see at night and what I thought might get worse with Anna's care, all of a sudden I'm thinking it might be me that causes issues, how I manage and deal with Anna... We just got through our first full weekend after my surgery where I was entirely out of the picture care wise. Weekends in general are just long, Anna becomes bored and we constantly are scrambling to find something of interest to her. T...
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Well I'm home and now almost 2 days post surgery. Denise is fully in charge. Yesterday when I got home I didn't feel that bad, but I knew that was primarily because the surgical nerve block had not worn off yet. As I write this now (approximately 40 hours post surgery) I can tell the honeymoon on pain is over and the next few days I will be helpless for the most part, the pain is quite intense in spite of my following the pain management plan given. Surgery night (Tuesday Sept. 10th) was hard on Denise, Anna had a rough evening, difficult sleep transition, some screaming; all they typical behaviors when there is a change in the house. Denise did give Anna an extra sedative dose and she did get down at 10PM and did sleep through the night. Wednesday morning Anna had a good morning, Denise said she had a large BM (her agitation many times is a sign that she has a full colon) and was sent off to her day program with no real issues, per Denise. Our caregiver Gi...
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Minus 1 I had hoped to have more in this by now, and I have no idea why or what I am comparing this against. In this section, which will be the last before my actual surgery, I’ll talk a little bit about something that I’m thinking about, something that is unexpected. Last night was another up and down night with Anna so my sleep, as usual, was in 2 or 3 hour slots. At least when I do sleep it is deep because I had 2 dreams last night, both of which stick with me even now at mid day. Usually, if I do dream, by mid morning the whole memory is pretty much gone. Not these. In both dreams I had in some way or another lost Anna, either by her going away or by being lost somehow, and I could not do a damn thing about it. I can’t help but think about how, as a parent, you get so ingrained into the care of your child that you literally do loose track of everything else. No matter how much you bitch and moan about what you are doing, how long, repetitive, wearing, wha...
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T-MINUS 7 At some point I do want to summarize Anna’s current schedule and what her caretaking needs are, but first I thought I would talk about how things have gone for the last week (the time we have actively tried to work Denise into more of Anna’s routine), and bring up an important something we both forgot about out as we “planned” this transition. Turns out we haven’t planned very well at all… Denise has started to block out more time with Anna, but I need to make it clear what that really means is I have given up some of the control of Anna's care. In spite of Denise many times being more than willing to do whatever care needs there was for Anna, I very often would say “no, you go do your thing I’m handle it”. That is not true, I see it now; I don’t really. Here comes confession time; For a very long time I have taken on more than I really needed to, taken on much more than what might be considered the equal 50/50 split. I’ve done this to allow Denise her free an...
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ABOUT ANNA Anna is complex in many ways. She is basically non-verbal, her “language” is a mix of using PECS, a few simple words, an iPad App (Go Talk Now), and hand gestures. She does speak a few simple words, all single words and never a phrase. For a reason we can’t understand, at the moment we are seeing more and more moments where she is trying to communicate to us about her wants and needs, we are trying to understand what she is saying, and all we are doing is getting frustrated with each other because no one “get’s it”. This has resulted in more self injury behaviors in Anna, which is how she typically shows her frustration. Anna will hit herself, sit down and bang her head of the floor, bang her iPad against her head, bite herself or us, pull hair, push furniture over, pull pictures off the wall, ect… We don’t have a solution to this other than to try and redirect her and prevent her from hurting herself more and working to “Anna proof” our home. For the last ...
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A GENERAL BACKGROUND ON THE FAMILY I probably should start with some general information about our family. Denise and I have 2 children; Anna is 31 and lives with us, her older sister Eva is 35. Eva, her husband and our grandson live about 15 minutes from us and we see them very regularly. Eva is in the medical field and her husband is in law enforcement. We live in the western suburbs of Cleveland, Ohio, where we both were born and raised. My career had two parts; the first half of my career I worked as an Engineer for GE in Aeronautics Research and Development in the defense field (stealth technology). My second career was business, after 18 years at GE I left corporate life and took over the family construction business. I say I retired in 2015 at the age of 57 but really I kept working but just stopped getting a good, steady paycheck; my third work career has been caring for Anna full time. Denise was a pediatric nurse and worked in a NeoNatal Intensive Care Uni...
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I've decided the first note should be on who we are and why I decided to do this. My name is Paul, my wife's name is Denise and our daughter is Annelise (Anna). We also have another daughter Eva, her husband Justin, and a grandson CJ. Anna has what is considered an ultra rare genetic condition that has resulted in her, among other things, being significantly developmentally delayed. The condition is not important but if you interested in learning about this ultra rare condition please check out the Champ1 Foundation (champ1foundation.org). A detailed summary of Anna's life story can be found on their website. Anna does, and will require support and care for the rest of her life, as well as continued medical care and evaluation(s). For Denise and I, going on 15 years now the primary caregiver role has been myself; Anna just listens and reacts to me better, she always has for some reason. In about 2 weeks now I will be having a total knee replacement and will be unable to car...