Living With And Loving Someone with Obsessive Compulsive Disorder (OCD)

I had someone recently remark that they didn’t understand how JD’s mental illness manifested itself. That is a very fair statement. Having lived with OCD for so long, I have forgotten that most people would not have a clue as to what this means. If you watch Hoarders on TV, you will see what the outcome is (as hoarding can be one of outward manifestations of what is going on inside the person’s mind) but that show does not even begin to touch on what it is like to live this way.

Since I have of late begun to speak more openly of my late husband’s mental illness and behaviours on ye olde blogge, I think it is only fair that I flesh this out so that people reading can have a better understanding of what this was and how it impacted our lives together.

From what I have researched, OCD can manifest in many different ways. I don’t claim that what I experienced is the definitive experience of OCD in a loved one. It is just my story.

I knew JD was quirky already from when I knew him in high school. But that attracted me to him. That he was unafraid to be himself. That he was not a conformer. That he thought for himself instead of accepting and following the status quo.

So when we became reacquainted in (much) later life, I was not surprised that he was still quirky. Although I didn’t know it during those early stages of our courtship and romance and even eventual marriage, JD was a savant when it came to deception and manipulation. He possessed a genius-level IQ. Apparently I am no slouch in the IQ department either, but he could think circles around me. And I let him. Because I came to love (and with that, to trust) him so deeply, I believed what he told me about why he did the things he did. He always had a rational, somewhat believable excuse for his irrational behaviours. So I over-rode my inner voice – my gut, my intuition – and believed him, for many years.

And to be fair to JD (and me), his OCD was not as pronounced when we first became reacquainted. But it progressed over the years and became much, much worse. To the point that I did not believe I could continue to live with him if he did not seek treatment. But then the cancer struck and I never did take that step.

Towards the end of his life, JD’s OCD manifested itself in the following ways (“Reader’s Digest” very condensed version):

  • Contamination fears – there were times his hands were red and chapped from incessant hand-washing. He had long and involved showering rituals to cleanse himself before performing especially stressful (to him) tasks, such as opening the mail that came to his building. Mail was not opened for months or years at a time due to this, and only after a lengthy set of showers and only in the nude, his skin glowing white from the dried soap film. He was hinting that when we finally moved house to his building (my current residence) that we shower and change clothes before entering the apartment and that no one else be allowed to enter…ever. We were to have 2 sets of clothes – one for the outside world, and one for the apartment. He wanted us to set up a visiting lounge downstairs for friends and family and to keep the apartment “clean” from contamination.  Anything that touched the floor was contaminated and could no longer be used…but couldn’t be thrown out either – it had to be added to the hoard. Animals were contaminants and anyone that had animals was contaminated. If I visited someone who had animals, the clothes I wore had to be segregated so as not to contaminate any of our possessions further. He took over the laundry duties so as to make sure it was done well enough for his needs. However “un-contaminating” an item was impossible to do, according to him. Because of his OCD, our washing machine and pipes were often blocked due to his overuse of laundry detergents (and soap when showering). Our water bills were pretty impressive for only 2 people. His clothing had to be washed differently and separately from mine. Eventually I too was considered a contaminant in his mind as I was no longer allowed to enter some rooms he considered “clean” at his building. I was banned from cleaning – especially dusting and vacuuming as this could stir up contaminants and blow them around our house. So I had to resort to “stealth-cleaning” when he was not around…cleaning just enough to keep me sane but not enough to alert his hyper-vigilant awareness of everything around him.

 

  • Superstitious/Magical Thinking – JD saw omens and portents in everything. If he saw a certain transport company’s trucks pass us on the highway, that was a sign that something bad was going to happen. I learned to try to distract him if I saw those trucks before him, in the hopes he wouldn’t notice. If something fell (on the contaminated floor!!!!) or broke, that was a portent also. He thought he was communicating with dead relatives regularly (mine too!) and that they were sending him these omens and signals to warn him or help him.

 

  • Lateness – We were chronically late almost everywhere but specifically for social events involving his family. These were stressful for JD and he usually had some “very important tasks that had to be done” before we could go, and these would take forever for him to complete due to his need to check and recheck things. I would become very anxious about being late and by the time we got to the event we were both frazzled and exhausted as a result. It was  easier to find a reason not to be social, because of this and everything that went with the whole contamination issue. This, along with JD’s requirement for absolute secrecy about what was really going with him and us, on was very isolating for me.

And last but certainly not least:

  • Hoarding – most items of JD’s (and then by association, mine) had a memory attached to them and could not be thrown away. Even if he forgot the so-called importance of an item, it could STILL not be thrown away because he thought it might have been important at one time.  I had a bunch of old margarine containers full of food his mom has prepared for him, taking up valuable space in my freezer. She died in 2002 and I have no idea how long before she died that she made these meals. Eventually this meant I could not throw any OTHER containers of prepared food out of the same freezer because it might have come from his mom but he had just forgot about it. He was skeptical when I affirmed that I had prepared the food in question and I had to defend it by saying those containers did not even exist when his mother was alive. He sorted through the household garbage each week to ensure nothing of “value” was being thrown out so I often found items I had thrown out reappearing in another section of the house like the basement or sun porch (where he kept most of his stuff, and where I was allowed limited or no access so as not to contaminate their contents and stir up dust). Food waste was allowed to be disposed of, but little else. And especially not paper, unless it was shredded first. Even if it was blank paper, it had to be shredded first. And of course he had to view it first to decide if it COULD be shredded. Which he never had time for, so the papers just piled up and up.

Here are some visuals of the clean-up of the hoard at his building in the year following his death. They don’t really do justice to the reality, but it gives the reader an idea. There was a proportionate (to the time spent there) level of garbage at my house (mostly basement and garage) to clean up as well, in first 2 months of widowhood. It took 2 very full rental truckloads to the dump and putting out about a hundred bags of garbage to clean my house up enough to put it on the market.

Outside storage room, about 75% cleaned out when this picture was taken.
Outside storage room, about 75% cleaned out when this picture was taken.

 

Using the main floor of the building as a staging area to sort through boxes and bags from the basement. Nearing the end...
Using the main floor of the building as a staging area to sort through boxes and bags brought up from the basement. Nearing the end…

 

Paper and cardboard ready to go out for recycling. From one room in basement,
Garbage, paper and cardboard ready to go out for pickup. From one of the basement rooms.

 

One of 7 dumpster loads I paid to have hauled away. I only dumped stuff I could not recycle or give away.
One of 7 dumpster loads I paid to have hauled away. I only dumped stuff I could not in good faith recycle or give away. A lot of it showed signs of a previous bad rodent infestation. JD used to store food (from his mom) in the basement, and that attracted mice and rats. When the food was gone they left too, thankfully. But their droppings and some skeletons were left behind.

I could go on (and on and on and on) about the impact of JD’s OCD on our lives and the lives of those who knew us. I hope this is enough for now to gain a better understanding of what people with OCD and their loved ones might be going through.

Rock on,

The WB

 

 

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Reticula

Wow. You must have a core of steel to have survived. You were like that frog that gets slowly boiled. I felt a little insane just reading that. Cleaning it all out must have been hella hard, frustrating work. Cathartic though? Like, when you were done, you were d.o.n.e? I’m glad you’re free now — free from the disease. And free from the secrecy. Secrets like that are so heavy. Hugs, my friend. It takes a lot of courage to expose yourself and your secret life.

Widow Badass

When I look back now, I have no idea how I managed to stay sane myself. You’re right – I was definitely the frog sitting in the pan of water that got heated up a degree at a time. I think that is true of a lot of women married to abusive men. I totally get why they stay for so long with their partners too. The clean up took a solid year, with help from friends and family. I couldn’t call a junk removal company because I didn’t know what I had – and JD mixed treasures and trash together. Example: I found over $1000 in cash in various places at my house. Sorting and throwing all that trash out was a major part of my healing process though. After being aware of it (and frustrated and scared of it) for so many years, the physical act of emptying my house and the building was just what I needed to break free and come back to myself.

Labyrinth

Stuff like this is so insidious, creeps up and seeps into every aspect of your life. I can only imagine the justifications he gave, the mansplaining about why this had to be, and of course so many excuses. I’m sorry you had to go through this but I’m glad you are free of it today and ready to live your life, your way.

Widow Badass

Yep, you got that right. You accept quirk after quirk and request after demand…and soon you find yourself living in Crazytown with no idea how it got so bad and how you let this happen to yourself. You accommodate and accommodate and it’s never good enough…but you love the person and you see they are struggling so of course you do what you can to make life easier for them…because you care so much. And your own life gets slowly and steadily chipped away at till you have almost nothing left. I wish I had the words to explain the feeling of freedom I have now. I wake up every morning and think “YAY!!!!”

Labyrinth

I have a very dear friend that is just starting a rough divorce, 30+ years married with four children (the youngest just turned 18, so I’m sure that is why he served her). I know one day she will be YAY! too but right now she is in beginning of a rough, painful ride. Once he is out of her life and she has started rebuilding, I can only imagine the relief she will feel that she won’t have to hear any more of his lies about his affairs, or deal with his passive aggressive, distancing behavior.

Widow Badass

Sometimes when your world crumbles all around you, it turns out to be the best thing that ever happened. Wishing your friend strength to get through the dark days ahead.

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