This morning I woke up and had to jet over to my dads house and get him ready to head out the door.
My mom went on a cruise with my aunt for some R&R so, that meant my older sister and I divided the caregiving role for my dad.
He is still independent enough to be at home alone but only for short periods. He cannot cook for himself and often needs reminders of personal hygiene however, he will always get himself into bed without issue and, at present, is hyper regimented about taking his medications.
Today was my day to get him up and ready to go to respite for a 4 day stay but, I woke up late after getting into bed at midnight thanks to a late stay at work.
I fully expected I would show up to a locked house - and I don't have a key.
Once before when mom was away and I was scheduled to get dad up for his day program, he locked the doors because he did not want to go and figured if I couldn't get in, then he couldn't get out. He locked all but one door that was under construction at the time and I crawled into the house through it. The look on his face was priceless when he looked up to see me standing there shouting victory!
He was in such a solid sleep I was shouting at him from his bedroom doorway and he didn't budge - aside from his chest rising and falling with each breath. I wasn't sure whether he couldn't hear me or was ignoring me since he's expressed his disapproval of needing respite care just days prior.
If you have any experience getting someone ready who has Huntington Disease, you'll appreciate how painfully slow they can be. It took dad at least 15 minutes to even get out of bed and another 15 to get dressed. Within that time his driver showed up.
I jetted outside with slip on shoes in -6 weather, jumping through the unshovelled sidewalk to apologize for not being ready but, he said he was early anyways.
Thank goodness because it gave me a bit of a window to TRY and hustle dad.
I ran back inside, kicked off my shoes and ran up the stairs where he was just getting his pants on. I coached him without the verbal repetitious hounding we all like to do when we are pressed for time and instead just shouted in my head, "Hurry up.... hurry up... hurry up!!!"
It is so important to remember that people with HD get overwhelmed processing information - small or large - including multiple commands and they actually become slower and more frustrated when this occurs.
When doing this I made a decision I knew I was going to regret - I did not tell him why I was getting him out the door.
This may not seem like a big deal but I really struggled with the feelings of guilt today.
I feel like I treated my dad like a child, like I fooled him as if he was not clever enough to catch on.
I lured him into his jacket and boots with his suitcase already sitting on the porch. I simultaneously put my jacket and shoes on to go outside with him almost to give him the illusion we were leaving together. If he knew he was going to respite he likely wouldn't have gone out.
In the days prior, he constantly said he could stay home alone and did not need anyone babysitting him. He felt so strongly about this, that he stood on the sidewalk of the house trying to divert my sister away just two nights before.
Once I opened the door and he stepped out onto the porch and saw our family friend waiting to drive him, he stopped dead in his tracks and my heart sunk.
I could only sense his disappointment while standing behind him.
I reminded him to be careful on the snowy steps hoping he wasn't going to turn around and refuse to go to program or become agitated that he was tricked - fooled.
In his prime, my dad was a super smart guy who loved to play tricks on people so much so that one Halloween his version of "trick or treat" was a heavy version of trick, flipping my aunts furniture upside-down.
But, in this moment I highly doubt he found it entertaining to be on the receiving end.
I'm not saying I have guilt that he actually went to respite because he, my sister and I need it for a few days in these 2 weeks but, I have guilt that I was not honest and upfront with him today.
Month by month he loses more independence and although he doesn't openly talk about his internal struggles living with HD, I can't imagine I helped today.
People with HD strongly need routine and predictability. I largely believe in being upfront with him so that he can process a plan ahead of time and come to terms with what is going on so not to put up a greater fuss when pick up days and the like occur. Although mom told him he was doing respite before she left, and my sister reminded him the day prior, I couldn't help but feel like I should've said something to him today before opening the porch door.
But can I change it? No. It's happened. It's over.
Would I do it different next time? Likely. I could have improved my actions to better suit his needs.
I would've got to the house earlier allowing him more time to get ready; known a precise time for pickup and; talked to dad about the plan.
But full disclosure, I'm a human. I get tired. I make mistakes. Life is busy. I'm fresh back to work from maternity leave and still adjusting to life with 2 kids and shift work.
I know I have to forgive myself for this and maybe it seems silly to feel guilty when it made his exiting easier but in my opinion, how we treat others is a direct reflection of our inner selves, and my lack of honesty by omitting information today allowed for an easier morning for me but, what for my dad?
He may be feeling betrayed, tricked and angry.
That is why I'm not ok with what happened and have guilt however, I also know that in dealing with chronic diseases and difficult personalities sometimes we have to adjust our actions out of our norm just to make things work and get that person with HD out the door.
