That's Ok, It's Just The Dementia

A frustrated son's journey with his alcoholic father -who now has dementia.

Three Years Later….

It’s been a long time since my last post. A really long time. My apologies. Things went from bad to worse and got to a point where I was hanging on by a tread. This blog, which I had started as a way to share my story and experience and hopefully lend a voice to frustrated amateur caregivers  -amateurs because we’re not trained we’re not nurses or psychiatrists or physicians, had become a nice little place for me to vent my anger etc…..things just got so overwhelming for me that I couldn’t even talk. I couldn’t talk about it here…i couldn’t talk about it, at all. Period. Shutdown.  it was survival mode and I just had to put my head down and plow through, unable to even find the words to express myself, needs, fears, experience. It was about exhaustion- both mentally and physically. Emotionally. My free time became none existent. My social life became none existent. Any sort of romantic/love type relationship with someone was out of the question for me as I was already for all intents and purposes married now to my father -and he was having a love affair with alcohol. As the dementia (his, not mine…I think.) grew and evolved, he became more dependent on me. This man that all I had ever, my whole life wanted to do was distance myself from -became basically my sole focus in life. Tremendous mind fuck for me. So the point is it was all I could do to keep us both alive. I had no voice, no thoughts other than survival for us both. At the same time wishing that one of us would die. I don’t know If those two feelings can exist at the same time, but that’s what was happening. There was nothing for me to give here on this page because that would have required examining what was happening in order to report it, and what was happening was not something I was capable of looking at….even though I was up to my ears in it. One thing that someone who’s involved with an alcoholic/addict knows how to do is turn a blind eye. So essentially by that description I was like the Helen Keller of caregivers. No voice, blind eyes, was Helen Keller deaf too? I think she was deaf. Well I guess I could hear so….as usual -not good enough. Typical. Ok so two things. In keeping with the original tone of this blog- don’t do this! Don’t take this on. You are not a professional. Hire someone that is a professional trained caregiver if you at all can. But You’re reading this so chances are you’re already in it. You’ve already taken it on. Ok then, the other thing is that there IS an end. There can be an end that doesn’t have to involve either of your deaths. My father is now in a facility receiving great care, and I’m starting to get my life back. A little post traumatic stress disorder for sure, but I’m coming back.

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Poop & Circumstance

What can I say about incontinence that hasn’t already been said? I know what you’re thinking-  do we have to go there? Don’t go there. I told you that I would be putting it all out there- it’s a journey. C’mon, who else are you gonna talk shit with?

       My Father has episodes of incontinence.  Sounds like a T.V. show doesn’t it? ”Tonight, on a very special episode of Incontinence”….. Anyway, it comes and goes. He’s actually been doing pretty well with that lately, thankfully. He has Dementia, and so a lot of things come and go with him these days – his memory, common sense, and the ability to know when he’s going to the bathroom, to name a few. That last one is the real bummer, and the thing that I was least prepared to deal with. As those of you that have been following this blog (Hello out there? Anyone?) know- I’m doing this all alone. No help. Dad doesn’t want anyone else in the house but me now. The thing is that, no one- nurses, doctors; nobody ever explained to me what I was in for. They all just included incontinence in the list of issues like “you need to get a shower chair for him and a non slip mat for the tub, he has trouble remembering stuff, he’s kind of incontinent, you need to make sure he takes his blood pressure medicine of course, cause he’ll forget”.  Yeah, right, ok- you know I’m making that mental list- gotta get that shower chair and….what was the other thing? Incontinence- I don’t have to get that- he’s got that already. Awesome. One less thing to get. Some of my friends didn’t even know what incontinence meant. Like, the definition. They thought I was mis-pronouncing incompetent. I wish. Yeah he’s that too. Man, we got it all here.

      I guess if you’re a doctor or a nurse it’s like yeah boo-hoo you have to clean up shit- big whoop or whatever. And they’re right- in the big scheme of caring for someone that’s sick; the humiliating, grossness of this facet of care giving is like, whatever for them. Not the big story. But you know what? It’s a big fucking story for me, ok? And fuck you for not preparing me even a little tiny bit for this. Fuck the shower chair!   

       So many people say to me, “I could never do what you do- I draw the line at cleaning shit”. Yeah I thought that too, but what are you going to do when the person you’re looking after (in this case my fucked up, alcoholic father who was such a prick throughout his life that he ran every family member and friend off) has dementia and doesn’t care if there’s crap everywhere. You really can’t just say screw it, and leave it on the floor, or the bed, or the T.V. (how the fuck does it get there?) now can you? They’re not going to clean it so……

      I think shit cleaner may be the worst part about this whole Dad has Dementia deal. But I don’t know- there’s so much bad stuff to choose from here- an embarrassment of riches. I will say that shit cleaner is definitely in the top ten if not the top spot. The top ten list is for another post I think.

      Not one single doctor, nurse, caregiver, article, book, blog or website addressed how fucked up this part of the job is. I CAN NOT be the only person that feels this way. I’m putting this out there in cyber space so that maybe someone who’s searching for info can prepare themselves a little bit.

      I’m here to put a face to incontinence. Ewww…. yeah that can’t be right. You know what I’m saying. This is messed up and I need to draw the line somewhere- it just seems that the line keeps getting pushed further and further from where I originally drew it. What a surprise. I’m pissed off again.

Incontinence. It’s the shit!

Piss & A Smile

      

      I was proud of myself. As I turned down my Dads street, driving towards his house- I made an effort to really be aware of what I was feeling. Instead of running from it, pushing it down, I needed to acknowledge it- feel it. Maybe all that Buddhism study is finally kicking in. So many times (basically EVERY time I can ever remember) as I drove down this street, my stomach would be in knots. Anxiety and fear were as common an experience for me on this tree lined suburban road as the stop signs and green lawns of the cookie cutter track homes all around me.

       Before my father was diagnosed with dementia (about a year ago) he was just a drunk. He’d been a drinker my whole life, but the last 5-8 years were a doozy. Or…a boozy. On two different occasions he’s pulled a gun on me. Not really intending to shoot me I’m sure, and to be fair that one Christmas Eve he did think I was a robber (letting myself in to his house with my key, arms carrying golden, shimmering wrapped gifts piled high enough to cover my face- my bad!) “Don’t shoot! It’s Gilbert, your only living son” I said. My older brother had died of a brain anyeurism a few years earlier on Christmas Eve and the thought that both of us would have Christmas Eve death anniversaries did cross my mind briefly. It didn’t come to that. The image of my Dad standing at the top of the stairs clad only in his boxer shorts (back when he used to get that dressed up) brandishing a gun is a holiday memory I will forever cherish. So, fair to say that coming here, seeing my dad has never been something I look forward to. It’s always been an anxiety-inducing thing and usually makes me physically ill in some way. Not this time, not so far anyway, and here I am a block away from his house.  I’ve been focusing on anxiety and change and how to deal with it. Learning to be conscious of my feelings or mindfulness if you will. So foreign to me- but I have been really trying to “get it”. There’s a book that’s been helpful with that, for some of you that might be interested: “Joyful Wisdom” (Embracing Change and Finding Freedom) by Yongey Mingyur Rinpoche.

     Those of you that have been following my journey on this blog (anyone?) know that it had been a week since my Dad stopped letting the caregivers into his house. I’d had paid caregivers visit my dad everyday to check on him and help me with the housework. Dad has just gotten released from the nursing home/hospital after a one-month stay, recovering from his slip and fall.  Now Dad decided he didn’t want anyone else in the house except me, and I couldn’t convince him otherwise. I knew that after an unsupervised week the house would be messy. Housecleaning/tidiness have never been his thing. Add Dementia and no supervision to the mix- Party Time! I expected food and trash to be scattered everywhere (it was.). I was just hoping I wouldn’t have to clean his shit from the floors or furniture today (I didn’t!) or that he wouldn’t be lying on the floor unconscious or worst (he wasn’t.). A real sense of relief this visit.  He had still pissed in the corner of the kitchen by the sink, as is his way. If cleaning that up was the worst of my chores here today, I was grateful. What a strange place to have arrived at I thought to myself. Who’d have thought I would find myself grateful to only be mopping up piss? As I mopped, I could see my father sitting in front of the T.V. in the other room, half watching the screen, half watching me work. We had never talked about his slip & fall accident so I asked him what happened that day he fell.  “Oh…did I fall?” was his response, then with a chuckle he added ”I didn’t know I fell”, facing me with a look of gosh- imagine that?!  I just smiled and told him that was good- who needs to remember stuff like that anyway? We both smiled and I continued to mop up the piss. Piss & a smile. He was happy just to be here at home, with his food and his T.V.- and his son/servant. Bewildered and amazed by what he couldn’t remember, or didn’t know, but not angry or bitter or even frustrated by it. There was something almost Zen about it all. I wasn’t sure I was ready to see it that way, but there it was nonetheless.

     As depressing and sad as Dad’s situation might be, I left that day feeling like I was learning something. I can’t say exactly what that something is yet, but I think that maybe, surprisingly it may just be a gift…I’ll let you know.

 

 

Preparing For Anything

     It’s 5 o ‘clock in the morning- (very early for me). I’m having a cup of coffee trying to wake up for the hour and a half drive to my Dads place. My eyes are still stinging from being forced open and my 6 year old pug is fast asleep on my lap. Was at work last night until 9:30pm and obviously I didn’t just race home and fall asleep- so I’m  really feeling this today. It’s been a little over a week since my Dad stopped letting the caregivers into his home. There had been a paid caregiver coming to his home everyday to make sure he was ok and help me with the house cleaning there. He decided he doesn’t want anyone else in the house anymore except me (lucky!)  I decided to give him a week alone thinking that after a bit of time on his own, he might agree to let the caregivers back in. I don’t know what I’ll find when I get to my Dad’s later this morning but I’m preparing for anything. It’s been two days since I last spoke with him on the phone

“That’s ok, it’s just the dementia”

     That’s what the nurse at the hospital said to me after explaining that my incontinent father was refusing to keep his clothes on. He had suddenly become a late in life nudist. An incontinent, late in life nudist…. Who says you can’t have it all?

     My name is Gilbert, I’m forty years old and I’m saddled with the responsibility of caring for my 79-year-old Father, who’s been recently diagnosed with dementia. I know little about this illness, and as I began to research it, everything I found was either clinical in tone, or accounts written by elderly wives caring for their beloved husbands. None of it spoke to me. I don’t like my father and never really have. He’s been a functioning alcoholic for my entire life. I’m the only member of my large Puerto Rican family that has anything to do with him. It’s up to me to see to his care. I resent him for it. I wish he would die, but still I look after him because it’s the right thing to do. But I wish he would die…did I already state that? Actually I’ve been wishing for his death since I was a little boy. My wonderful Mother died of a heart attack about 10 years ago. My only brother (older than me) died around the same time of a brain aneurysm. I had been wishing for my father’s death all these years and this is what I got? Fuck “The Secret”, okay?

      So it’s complicated and it isn’t all at the same time. Yes, I’m in therapy and I attend ALANON meetings. Hearing people speak at these meetings; people I don’t  know  telling their stories, and saying things about their loved ones that I also felt but never dared say aloud was so beneficial to me- it’s what prompted me to start this blog. I’m going to talk about this journey I’m on. The good , the bad and the absurd. Maybe it will it will help someone out there to know that it’s ok to be pissed off and that you’re not a monster….maybe it will help some overwhelmed caregiver feel a little less alone…maybe, just maybe it will help. I think it’s helping me already.