I used to be a fairly pleasant guy. That is no longer the case as I spend a good deal of my time angry. Very angry. I am extremely bitter that the last 10 years and the remainder of Lynn's life have been stolen from her/us. I am angry we will never have the chance to repair the damage done to our relationship by the evil that is HD. I am particularly angry her grandkids will only remember the raving, violent lunatic that dominates her waking hours lately. They won't remember the doting grandma she was. I am angry that our family - admittedly somewhat dysfunctional in the best of times may be permanently fractured because of HD. I am bitter there is a 50% chance each of our kids may have HD. I'm even more bitter that if either of the kids have HD there's the same 50% liklihood each of our 6 grandkids have HD.
Spare me the "when god closes a door he opens a window" saga. If she/he opened a window for me it was to simply slam it down on my fingers just for giggles. HD is not just a disease like cancer that decimates the body - HD destroys the essence of the individual - and does that early on, leaving a shell of what once was that person. While it may have specifically different impacts on individuals, extreme anger and paranoia seem to be constants along with the destruction of human motor skills. So a once vibrant, attractive gymnast becomes a haggard old crone that screams, swears and yells abusive, vile comments regularly at those with the challenge of caregiving. The caregivers can become angry and disillusioned.
She has no control over her bodily functions and is just as likely to try and kick/hit/bite the individual that tries to change her and clean her up as she is to be passive enough for that basic, necessary task to be accomplished. Nearly every door frame in the house is damaged due to the constant, repeated slamming of the doors. There are door knob holes in every wall where there is a door. They remain unrepaired until we move or her ordeal ends. That is the day she dies. That may not be for another 10 years.
Trust me when I say I understand fully this is just the luck of the draw. I do not believe in any form of divine intervention in this matter. In any way. It's very difficult to think a so-called creator capable of the so-called intelligent design of the universe would spend the time to intelligently/intentionally design something as destructive as HD. Or any of the myriad of fatal conditions/diseases. Especially a so-called loving architect of all that is supposedly good and true. I trust my use of the terms supposedly and so-called expresses my cynicism and sarcasm on the matter sufficiently.
There is a darkness in me only few know or have seen. It is part of my natural makeup, a gift from the male sperm donor of half of my genetic makeup. That so few are aware of it is a testament to my ability to control it and keep it suppressed. Occasionally it bubbles up. This commentary is a minor bubbling. I am not looking for sympathy/pity - I am merely ranting a bit. As I've said - these are my cards, my hand in life and I am playing them to the best of my ability. I'm all in at this point. I just need to vent on occasion.
Check out what the other LBCers have to say on anger. They're listed over there on the right.
I wish I could take you into my arms and soothe you.
ReplyDeleteU
You are talking to me. I hear you loud and clear. Perfectly normal and human and this has been a cathartic experience writing about it. And the song is the best choice for the moment.
ReplyDeleteShout, shout, let it all out, these are the things I can do without
Come on, I'm talking to you, come on
(They really really ought to know) Shout, shout, let it all out
(Really really ought to know) These are the things I can do without
(They really really) Come on, I'm talking to you, come on
(They really really ought to know) Shout, shout, let it all out
(I'd really love to break your heart)
These are the things I can do without
(I'd really love to break your heart)
Come on, I'm talking to you so come on
Shout, shout, let it all out, these are the things I can do without
Come on, I'm talking to you, come on..
I'm listening. Nothing I have had to deal with in my lifetime, compares to the road you walk day and daily. I care.
ReplyDeleteYour anger is justified, Shackman. I felt some of that anger when my mother-in-law developed Alzheimers. I watched as this saintly woman turn into a monster.
ReplyDeleteI took care of her for ten years and it was a nightmare.
My prayers and my heart are with you. blessings ~ maxi
I think I look at these kinds of things a little differently than much of the world. I always think about the “Prime directive” from the show Star Trek. In the show, the Star fleet was given a rule that said that they could not interfere with the natural development of a civilization. In some cases they were light years ahead in technology, but could not share that technology with the civilizations. They had to let them develop naturally. I do believe there is a God, but I believe He uses this same kind of rule with us. He allows us as a world to develop and learn at our own pace. He allows bad things to happen, because that is part of this mortal experience. He allows wars and disease. He allows murder and rape and evil to happen. Could He stop it? Of course, but that would defeat the purpose of this mortality. We are here to learn, but also to be tested. It is only through these fiery furnaces that we find out what we are made of. I myself have been experiencing some symptoms that will probably be debilitating in my coming years. My husband will be put in a similar position as you. I know it will be difficult, but I hope that we, like any good metal, can keep from cracking under the pressure. But in my situation, I believe that God can provide us with some measure of peace, even during difficult times.
ReplyDeleteHaving said that, I must also say that I do believe, as I commented on Ramana’s post, that anger is an expression of inner pain. There is always another pain hiding behind the face of anger. While it may express itself angrily, it’s really a front for hurt. So I applaud you for being able to express that feeling, because if you keep it to yourself, it can eat you up! I wish that I lived closer and could come and help to give you some relief.
Thank you all for the comments and listening.
ReplyDeleteI have been mortified by your situation ever since I learned of it in our reconnection. I have always sensed your strength, but it exceeds what I would have guessed. You are seeing the downside, rightfully so, of your genetic inheritance, but I see it alloyed with an amazing strength, for almost anyone else I know would have buckled completely by this point. Unfortunately, the inordinately strong often suffer inordinate pain, because they aren't broken by the strain, so this is kind of a backhanded salute to you, my friend. A salute filled with compassion and concern, but no desire to weaken.
ReplyDeleteWow, I was so moved and saddened by your comments, Chuck. I, too, was angry when my mom was diagnosed with Alzheimers and I felt so guilty about choosing NOT to be her caregiver. When my mother passed after 6 years of suffering, I had been grieving for years before she died because she no longer was my mom in so many ways. During the last two years of her life, her "essence" was lost to me. It was a long good-bye...exactly what you are experiencing right now but you are living it 24/7. You are allowed to be angry and to vent... Being a caregiver is physically and emotionally exhausting. Screaming is healthy. When I spent weekends with my mom, I used to wait until she went to sleep and then I would go into the garage and scream and cry. I'm surprised the neighbors never called the cops!
ReplyDeleteLike you, I often question the existence of a merciful God...what purpose is there for Lynn to suffer so? HD does not allow her to reflect on her life or seek grace, peace, or forgiveness...it just brings her suffering. I was raised a Catholic and had quite the indoctrination. Left the church when I was 16 because it no longer had meaning for me but who knows?.. on my death bed...will I be asking for a priest?
You are Lynn's champion, Chuck. Love you.
Grannymar sent me- I'm glad she did. Powerful stuff.
ReplyDeleteShout all you need to! Blogging can be a great release
Thanks speccy
ReplyDelete