Monday, July 25, 2011

Mondays are for...

Quiet contemplation.

My father has Huntington's disease. Luckily for me, he is not my biological father, therefore this is not a potential outcome for me personally. I have enough to worry about with AIDS, various predispositions for several cancers and potential diabetes. I wouldn't want to add a degenerative neuro-muscular disease as well. My plate quite full with health stuff.

What is particularly frustrating is that my Dad is still there in most ways. Still interested in current culture, still obsessed with photography, still willing to do anything for his grand kids. He is just a little slower in significant and noticeable ways. Just not 100% anymore, to the point where some measures of outside controls really should be put in place - but they just aren't there yet. Yet. A huge word.

Regardless of my potential for it though, with my father having it, in many ways, this means my whole family has Huntington's disease too.

Denial is a major social lubricant in our family and it is dangerous to point out the elephant in the living room, be it alcoholism, Huntington's, obesity or other dysfunctions. This has made me the black sheep of the family more than once since I don't like living in denial and tend to find ways to bring these things up as gently but undeniably as possible. This usually causes a small dust storm but when the dust settles things are in the light and we have no choice but to address them in some fashion.

Often we address it by sliding back into denial (hey, it counts as a way to address it!) This is the current pattern with my dad's disease. Repeated attempts to bring this up with either or both of my parents has had no success.
  • He still drives...after four car accidents in less than two years, all his fault, all because of his inability to comprehend and act quickly and the rapid onset of anxiety and confusion in stressful situations. Like driving with 4 year old twins in the backseat. Bad Idea. Doesn't stop it from happening.
  • He still has free access to money...even after multiple impulsive and poor financial decisions brought on by the loss of his ability to logically reason or slow down once an idea is stuck in his head. Most recently (in the last month - we could go further back but why bother) this has meant $1,000 for a new camera lens because the one he had "made a noise". $900 for new tires because one was flat and the guy convinced him he couldn't buy just one tire (the ones he had were only 6 months old and less than 2k miles on them), and he just applied for a 10k loan to buy a new camera, that he won't be able to use - he doesn't have the manual dexterity anymore.
  • He doesn't do any exercise or physical therapy - after watching his brother decline with the same disease to the point where he can no longer use utensils or get up and down from a seated position without human assistance - and multiple discussions with his doctor - he refuses to walk regularly (its hot or cold or rainy or whatever) and sleeps 12-18 hours a day. It's not his meds - the most common answer my mom gives when approached about it. If woken up, by anyone, he will get up, get dressed, putter around on the internet or watch tv.
  • He won't establish a routine - everyone from his doctor to the most current literature on the disease point out that unless you establish a routine, things like bathing, walking, dressing, sleeping, eating, drinking (water), all fall into randomness and people with Huntington's won't shower or take baths (it is sort of an issue of too much stimuli i.e. noise, movement, balance, all at once), won't dress, become malnourished and lose weight, can become dehydrated easily.
The list goes on. What troubles me is that all of it could be addressed with the exception of the obvious fact that things will continue to deteriorate. He won't get better - ever - but he could slow down the getting worse, and my mom could help by limiting his options and taking a firm stance. But our family doesn't work that way. The pathway to comfort lies in denial. Ignore it, explain it away, pretend it isn't happening.


I know from whence it comes - my mom's father and my dad's father both had severe drinking problems. My dad's dad also was physically abusive to his wife and kids.

We weren't to acknowledge how it entered our own home either. Like how my dad never lifted his hand towards us directly but channeled his angers into other types of abuse - emotional and property damage - things like humiliating you in front of your friends on purpose to make you squirm until you learned never to bring friends home any more - or purposefully running over your bicycle to make sure you understood to always put it away in the right place - or threw things near you, not at you to scare you into submission. We also cannot openly acknowledge that after his breakdown 22 years ago, he is a better, kinder and more loving person. To say this is to admit he was none of those things before then - which he wasn't - he was a horrid and abusive person much of the time before he had a mental and psychological reboot.

We weren't ever aloud to talk about these things. We still aren't. With the grandparents it was always pretend we didn't see or know why one Grandpa screamed and called us by the wrong names and couldn't walk normally sometimes. Or why the other side's Grandma walked with a limp and had to move in with us for her own safety. To say anything about it brought on worse treatment or got you ostracized - and while ostracism is preferable to worse treatment, it comes with its own pain.

Time passes, we grow up, things change, people change. I got treatment for drug and alcohol addiction at a very early age. It saved my life but it also made me capable of choosing my denial level. I can still do it - and sometimes I consciously take that path - sweep it under the carpet and pretend it didn't happen. However the older I get and the more interpersonal work I do with my husband the less likely I am to choose that route. This has been a blessing for me personally, not so much a blessing for my interactions with my family.

I am blogging about it today, for lack of a better place to put it. I don't want it in my head right now and I need to put it somewhere.

So today, I am contemplative. What should I do. What might I do. What can I do. Which leads me to How do I do it? That's really the $64,000 question. To pushy and he gets angry and recalcitrant, too easy and we can pretend its not happening. Do I wait for him to have a car accident that someone can't walk away from? Is that when I force the issue with the DMV? Do I wait until he has put himself and my mother in financial distress before I force the issue of fiscal power of attorney? Do I watch while he becomes bed ridden and my mom with her bad back and neck is forced to admit she cannot care for him?

I am at a loss. Whatever I do, even if I do nothing, there are serious consequences to consider.

So I here I sit...and I hope that a light will turn on and move me in a good direction. What I need is an Aha! moment. I wish they were sold at the 99cent store.

TLDR: So sorry, blog buddies, for having a heavier than normal topic. Today sorta sucks, show me a good looking man already!

Okay - here he is :P I am considering a new theme - Mondays are for Morning Wood...


What do you think? Should I do it?

1 comment:

  1. WOW! I and my mother went through a similar case with my father although his was cancer. But he acted in ways just like your father. The cancer got so bad we just had to get help and he ended up going into a nursing home by the urging of our doctor. So did after some time and he was only in the home for 3 weeks before passing. Everyone is different and I can't tell you what to do except just hang in there. And the mornging wood might cheer you up!!!! Oh-and thanks for stopping by my place.

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