I rarely heard from my brother Harry. But when he called to ask me to visit him as soon as possible, I told him yes. Just being informed that he had incurable cancer, he said he had some things he wanted to give me and to say goodbye. Hurriedly plans were made to fly across country—he lived on the East Coast and I on the West Coast. His wife, Fran, warned me several times to wear blinders as the house was messy. Repeated apologies came from her before I arrived. She flat out told me to not be alarmed at what I would see. She said their daughter’s old room was available and she would clear a path for me to the bed. In spite of the advanced warning, it hit me sharper than I expected. It was completely chaotic. My stomach churned and my head was doing its best to process what I was seeing. Thread bare carpeted stairs led up to the bedroom. Dragging my suitcase I had to carry it sideways through a tiny pathway, as the stairs were piled with boxes, papers, and many other miscellaneous items. It was foreign and painful for me to see this mess. I had seen a house similar to this once before in my life, but this was way over the top beyond that situation. Inventing the answers on my own was my chore. My Mama kept a neat and clean house where my brothers and I had grown up in Minnesota. There was an old family photo album that I knew Harry had somewhere. I wanted that album. We were raised in, what I would call, a good home and had no inkling of disasters that might befall any of us. I was a typical sloppy teenager, but as I grew up, I became more responsible and got rid of things that accumulated. I’m still big on re-cycling old newspapers, junk mail, and old magazines. Seeing this mess, it looked like everything that came into Harry’s house stayed there. I shuffled around in my suitcase thinking how I would live out of it for the next week. Fran called for me to come down to dinner. I looked at her gaunt body and knew there was something inside her sadness that I hadn’t seen right away. The refrigerator was cluttered with frightening piles of old food and I feared eating anything. She took out a frozen dinner and heated it in a broken down microwave. It looked fairly safe since it was frozen, but not the kind of food I was used to eating. I managed a few bites but could not stomach anymore. To add to my disgust, there was mouse droppings and nests all over. I don't think the floor had been swept or washed in possibly 10 years. Her eyes narrowed when she said her vacuum cleaner was broken and did not work. I asked why she didn’t get it fixed. She answered lamely that she didn’t get out much and was too embarrassed to have anyone come to the house. The fridge needed to be replaced, the oven no longer worked nor did the dishwasher. Even the microwave gave out while I was there. C’mon”, I said, we are going to the store and you will buy a new microwave. “Fran, you can’t live like this”. Fran had fallen into the role of co-dependant to my brother. Why he was suffering from the disease of hoarding, I had no answer. We needed to get some edible food in the house. We went to a grocery where there was a salad bar and other foods that were suitable to eat. Other days there were trips to McDonalds and Wendy's - fast food places I don't frequent either. Fran had become frail, very thin and was not functioning well. I found a chair in the family room where I could sit, got out my iPad and searched the internet to learn about hoarding. What I found was compulsive hoarding is a common and potentially disabling problem, characterized by the accumulation of excessive clutter, to the point that parts of one's home can no longer be used for their intended purpose. A number of rooms were so full that the doors remained closed. There was no way to get past the entrance to these rooms. There didn’t seem to be any point in confronting Harry as he was nearing death. His skewed self-view was that of a collector. I thought to myself, big brother you are in extreme denial. When she tried to do anything he would shout at her, put her down or ignore her—she finally stopped caring and entered a world of her own. No one ever came to visit as Fran was so ashamed of the condition she lived in. Harry was consumed in a world of denial and he didn’t like me asking questions about his private life. What he did want - was to tell me his history of all of his accomplishments. It was interesting how he compartmentalized his present living conditions from his history of being a "doer". Every room in the house was filled to capacity and then some. Stacks of old items, as well as new boxed items that had never been opened, medals and trophies, newspapers, magazines, junk mail, and excessive amounts of pens, glues, paper, etc. In the room where I was staying there were copious amounts of jewelry everywhere, a collection of more than one hundred stuffed bears, jewelry boxes of all sizes and clothes that had never been worn and stacks of make-up and books creating a room so deep with “stuff” that is was impossible to negotiate except for a small opening at the foot of the bed. It was originally their youngest daughter’s room who had passed away several years ago from Hepatitis C, contracted during a rare brain surgery. My niece had an excellent role model for hoarding. There were two huge TV sets in the family room. One they would watch some programs on and the other served as a stand to put things on. There was an unopened box that said TV on it. Fran asked me to see what was in it. Inside was a flat screen TV that had never been opened or used. I got it out of the box and hired a couple of guys to get it set up and get rid of the old sets. Harry told me there was a guitar he wanted me to have.. He pointed to the corner of the living room. I crawled over boxes, stacked furniture, papers, clothes, and a couch to spot the guitar case and reach my arm as far as I could to grab it. Behind all this junk one of the windows was broken and cold air was pouring in. There were two storm doors on the house in such poor condition that they desperately needed replacing. Harry had earned a very comfortable living during his working years and Fran also had a professional job that paid well. In addition to their social security, they had monthly income from pensions. He was very proud to tell me that he had made excellent investments over the years and kept putting the dividends back into the funds which now amounted to approximately a half a million dollars. It was very hard to believe. At the end of my week there, I could hardly wait to go home. I knew it was the last time I would see Harry alive and it was o.k. I called Hospice and arranged for them to begin to come over and take care of him. They got right on it and were there the next day. I was home a short time when I got the call that Harry had passed away. “Please come back”, Fran said. “My brother will come to be here along with his son” , but she definitely wanted me. My daughter agreed to come with and we got a room at a nearby motel. After the funeral, my daughter found a nearby trash hauling service to come out with a removal team. She directed them and in the matter of two days and two huge U-Haul trucks carted away some of the mess from several of the rooms. Many of the items were valuable, some in unopened boxes. Fran let it go and was happy to report to me later that she had had guests in her home for the first time in at least ten years. There were still several rooms that needed emptying, in addition to all the broken appliances to deal with that needing replacement, but we had to get back home. We arranged for a company we found on the Internet to come and replace the storm doors and broken window. Hoarding is a serious illness. Brains scans confirm that victims of hoarding disorder have abnormal activity in regions of the brain involved in decision making—particularly in what to do with objects that belong to them. Hoarders not only collect too many things, they feel unable to throw them out even if they’re useless. As we came to understand, hoarding affects loved ones as well as friends and colleagues. It is complicated by the fact that the hoarder is seldom aware that their problem is a disorder. Learning to live with a hoarder and create healthy boundaries was a lesson Fran could have benefitted from. A lesson that many others are dealing with today.
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