The note, written in memory of the author’s mother, deserves a wide audience. With the author’s kind permission, it’s my privilege to share it here:
My mom passed away last month at age 87. She’d been having a lot of pain that was hard to manage, advancing dementia, etc. and it was her time and her passing was a blessing, but still, I miss her so much. She was one of the kindest people I’ve ever known. She always thought the best of people; saw the good in them.
I want to share what I feel that I have learned through this group over the years. This is my own personal slant, garnered from years of personal experience and years of reading other people’s posts.
1. Hoarding is a brain disorder. Loved ones cannot change it. It isn’t merely a behavior; there is something wrong with the brain. We can’t expect hoarders to simply change their behavior, but we can and should expect them to seek the help that they need to make serious changes. There are treatment options, but the hoarder has to want to be treated. It is exceedingly rare for a hoarder to want treatment or to be willing to change.
2. Hoarding is a disorder, not a character defect. The hoarder can’t help it, there is something wrong with their brain and it is simply impossible for them to make well-reasoned decisions. However, character does play an important role. In order to make changes, the hoarder has to have the fortitude of character to admit that they have a problem, feel remorse about how their problem is affecting others, and earnestly seek change.
3. Don’t assume that medical professionals, psychiatrists, psychologists, social workers, Child Protective Services, Adult Protective Services, or other professionals truly understand this disorder or that they can or will take appropriate action to protect vulnerable children, elders, or adults or the hoarder him or herself. Hoarding is a disease or disorder that is in the early stages of research and effective treatment. Treatment/help is available, but you have to do your own research or reach out to this group or others like it and find a professional that truly understands that this is a disorder and not simply a character defect.
4. Protecting the children is the #1 priority. Over the years, many, many survivor/victims of childhood hoarding households have written in to tell how the hoarding has negatively and permanently damaged them. Also, children live what they learn, and many children who grow up in hoarding households grow up to be hoarders themselves. It is very important to find a knowledgeable professional that is willing to help the non-hoarding parent to ease the children into a healthy living situation, while maintaining regular or intermittent contact with the hoarding parent, if possible.
5. People who love the hoarder have to realize that it is nothing personal, but for every true hoarder the hoard will always be #1. You can’t live with a hoarder and be a happy person unless you are willing to consciously and willingly accept that you will always be #2. The hoarder’s children will always be #2 as well, even if #1—the hoard—is exceedingly unhealthy and physically and emotionally damaging to the children. Even if you, the loved one, had the looks of Brad Pitt or Angelina Jolie, and the charms of the most amazing TV cook/crafter/housekeeper/handyman, etc., the hoarder would still make you #2 and the hoard would be #1. If forced to choose between you and the hoard, or their child and the hoard, they will always choose the hoard. I think that for many of them, if they were forced to give up the hoard or die, they would choose death. Indeed, sometimes hoarders are killed by their hoards, literally being crushed under a mound of useless stuff, and this after years of warnings. If your loved one is a hoarder and you think that he or she is different, then you simply haven’t come the full cycle yet.
6. Loving a hoarder is much like loving an alcoholic. The principles of Al-Anon are very helpful and applicable to the hoarder-lover. The principles of codependency are 100% applicable. In trying to find healthy ways for us and our children to live, we would do well to turn to the writings of Al-Anon and various on-line and library resources from alcohol and drug treatment groups that offer information to family members on how to draw boundaries with love.
7. In order to get healthy, friends and family of hoarders have to be brave. We should be loving, but draw lines in the sand and declare that there are certain unhealthy living choices that we simply will not tolerate. When we do this, we have to be willing and able to stand behind the threat. Sometimes, the hoarder will refuse to get treatment, or to make healthy changes. This means that we may have to leave them in order to find a healthy life for ourselves and/or our children. We may lose everything and have to start all over from scratch.
I want to thank all of you for being my support in these last years as we moved mom out of my parents’ home of 50+ years, moved her into independent living and then into assisted living. Fortunately, she’d been a clean hoarder; in fact, she had a little touch of germ phobia. As her dementia progressed, we were able to exercise more and more control over her life. We managed to move her into an independent living apartment with the promise that she could move back to her home (and her hoard) if she felt that she needed to. Interestingly, this transition was made easier for her because being free of all of that junk and starting out in a clean, tidy apartment was very comfortable and liberating for her. She lived only a block or so away from a dollar store, but as her dementia progressed, one of us would take her downstairs to the dining room while the other daughter did a quick purge of junk from her apartment. Her dementia saved us—she didn’t seem to notice that her precious things were missing. After about a year, we three daughters spent nearly every weekend over a whole summer emptying out her house, and then we finally were able to sell it.
This group helped me so much as we processed the emotional impact of her hoarding. Before dementia set in and we were able to take some control, there were many years of hurt as she consistently chose the hoard over us, her family. In fact, she never really developed a relationship with my now teenage daughter, her last grandchild, because of the hoarding. She’d become so annoyed and afraid that I’d try to get rid of one or more things when I came over that she essentially forbid me from entering her house—politely, always with an excuse. She didn’t want to drive the 40 miles to my home, and I think that her increasing isolation was part of the hoarding behavior, too. I couldn’t go visit her and she wouldn’t come visit me and my family. We’ll never be able to reclaim those lost years, but it helps me enormously to have had this group, which has helped me over the years to understand that it wasn’t that her love for me or my daughter had lessened, but that her love for her stuff just continued to grow and grow, that it was a sort of brain disorder and a disease, and at some point it just overtook her and crowded everything else out of her life.
Thank you so much for writing this, Jeanne, and thank you for letting me republish it here. I am sure that it will help many people to gain a better understanding of hoarding and the impact of hoarding on the friends and families of hoarders. Please accept my condolences on your mother’s passing.
How did I miss this well-thought post in the group? Jeanne, I'm sorry about your mother's passing, and also about the mother you and your sisters deserved but never had. You are so brave to share this. Thank you.
I gotta disagree with the Hoarder makes the hoard #1 thing. My mom's a hoarder, but we ended up moving from a house to an apartment(partly because my sister and I wanted to, partly because we were forced to) and she ended up giving up a lot of the things she wanted to keep. A lot of what's in this post is really true though.
First, please let me say that I am so sorry for your loss, Jeanne.
I am both a hoarder and a child of hoarders. I didn't realize what my problem was until 2 years ago when I saw an episode of Hoarders and recognized myself in those on the screen. I have been working since then to dehoard my home and fight this thing on a daily basis.
I see myself in almost everything that Jeanne wrote. The only thing that did not apply was the hoard being number 1 in my life. It was never number 1 in my parents' lives, either. To be honest, I know that I am very fortunate to have grown up like I did. I never doubted my parents' love for me, and I don't believe my children have doubted my love for them, either. If I had not put my children first, I don't know that they would have survived the medical problems they have as a result of their genetic condition. I have tried to create very special moments for our kids, because I had such an amazing example to follow in my mom. I think a person can still be a 'true hoarder' and not have the hoard be number 1 in their lives. I think that like any disorder hoarding varies in degree from one person to the next. A person on the lower end of the spectrum is no less a hoarder than the one at the top end.
That being said, there have been times that the hoarding has been problematic. It caused tension both when I was a child and after I became an adult. And I feel I could have definitely climbed higher on the hoarding scale had I not seen that first episode.
I appreciate Jeanne's compassion toward her mother and other hoarders in the post she wrote, as well as her brutal honesty. I am also very sorry that she was not put ahead of her mother's hoard. My heart breaks for her and other who have been neglected as a result of stuff.
Thank you for posting this letter.
Jeanne, I'm sorry about your mother's passing.
Thank you very much for writing this. It helps me to think through the puzzle pieces more clearly, and to let go of some of the pain.
Keep it simple. Create a list of necessities and change behaviors:
Replace an entire office and all media with a handheld computer - work anywhere anytime.
Living room: Couch, chair, floor lamp
Kitchen: One set pots / dishes / utensils
Bedroom: Bed, pillow, 2 sheets, blanket, quilt, floor lamp
Wardrobe: 7 outfits, sweater, hooded jacket, gloves, tote bag
Bathroom: 3 towels, one cosmetic bag
Use a daybed / sofabed to sleep, study, dine and entertain.
A separate bedroom, office and dining room may not be needed.
Store items in baskets beneath furniture.
Vertical storage is claustrophobic and cluttering.
Bureaus, closets, shelving, cupboards and tables may not be needed.
Take good care of your possessions and pass them on to others.
I have a 49 year sister that is a hoarder. It took me such a long time to realize she had something wrong with her head. She has hurt my family in so many ways as her hoarding leads to her to spending my parents money unwillingly.
I have been so ashamed of her and what she has done to my family. My Mother went to a home this year and Thank God! .. My children were never allowed to go see grandma @ her home . They never knew were she lived until I brought them to my parent's huge home which is in an upscale town. I wanted them to see what my sister had done to the house so they would never fall victim to this gene that I know my sister inherited. My Grandmother was a hoarder. So much shame .. so sad
I'm just finding these blogs on hoarding. I think I may have tendencies toward this. I'm really not sure how to find out. I have tons of empty space, but I make such a mess behind me that I fear if I ever lack the motivation to keep pushing myself to clean up, I'd be lost.
Jeanne, thanks for sharing your story, and I'm sorry for your loss.
I'm particularly moved by these points:
2. Hoarding is a disorder, not a character defect.
5. People who love the hoarder have to realize that it is nothing personal, but for every true hoarder the hoard will always be #1.
It's hard not taking it personally when my mother does certain things related to her compulsive hoarding. But I'm learning, and forgiving. This whole situation is so complicated...it really is hard to get others to understand this illness and it's far-reaching effects.
Wow, I wish I knew these things before I tried to confront my mother about her hoarding.
I also wish my mother could accept that #1 and #2 are true. Then she might be able to shake enough of the shame to get help. But that's never going to happen.
Thank you for this letter, Jeanne. I'm so sorry about your loss. Today is my first day of going online to figure out how to work with my Mom's animal hoarding. Your letter teaches gentleness and strength.
Sorry for your loss Jeanne. I am a child of a hoarder. It's hard, because ever since I can remember I always remembered my house being unclean. I don't have one single memory of my house being unclean. I really with I would have one, just one memory. One night when I was like 5, I was in my room, and got scared about the dark corner in my room, there is a bathroom in that corner. That night I was scared, because I thought there would be werewolves coming out of my bathroom. I know, I know, haha, it's funny now, but then, I was scared. Thanks Harry Potter! In one of the HP movies there is this werewolf and I was scared of it. So I got scared and I went down into my parents room and slept with them. I never slept in my room again.
Ever since I left my room, my mom put bags of cloths, useless things ect in my room. It was filled up to the ceiling in bags of things. Over the years, my dad would yell at my mom to clean the house and the bills ect, and I would hate him for doing it. I eventually got scared of him. Since almost my entire house is full of things, I had to sleep in my parents bed. My dad moved up onto the couch upstairs. When I was in about 8th grade, I started to want to sleep on the couch. Since I was growing up, I wanted my own room. Of course I couldn't have MY room back, but I had to deal with the couch or my parents bed. We switched from time to time. 5 people live in my house including me, 2 sis. My sisters room is messy aswell. Awhile back we got the room somewhat clean and we can actually walk/sleep in it. The room still is alittle messy even now. So, my one sister decided that we could take turns sleeping on the couch/her bed. We still do that to this day. Whenever I take out the trash, I put it on the trash pile. Yes, a trash pile.
My dad started saying put the trash out there so he could burn it, but over the years he stopped burning the trash. Now it's just a pile of like, I don't even know how many trash bags of junk/food/whatever we threw away. Since my house is messy fruit flies have been in and out of my house for years. Even though my mom is a hoarder, that doesn't mean I have to be. I am the only one in my family that actually wants/does/tries to clean the house. I have wanted the house clean forever, but, nope. I had tried so many times to get the kitchen sink clean so that the flies go away, but it doesn't help cause everyone else sometimes let their trash lay around and are too lazy to put it in the trash can. Then the flies go to it and then reproduce. It's been hard trying to get them out all the time, but in the winter I usually have a break. Since it's cold and the fruit flies usually go away. My house is messy for one reason, my dad stopped cleaning it. He and I had a talk one day an he said since he stopped cleaning the house, the house never got cleaned. No one else worked on it. Now, in school I am shy, like don't talk to anyone unless they talk to you kinda shy. After that talk, I kinda started to get over my shyness for whatever reason. I still am shy, like not talking to anyone unless they talk to me first. But, I get less embarrassed and I had to present last week, it went kinda better. So, I am grateful for that talk. Anyways, whenever my sister or I try to clean the house, it goes back to the way it was. She kinda stopped, but I still have that hope, one day I will have the Best memory ever, the day my house is finally clean. I'm still waiting...still have that hope , yearning. But until that day comes, I'll still have to try until it finally happens. Today, I'm in my sis room and I threw the cups, cans, paper plates on the floor and waited for her to come on. She came in and she looked at it. I said clean it up and she said no, naturally. Then she did clean it up and she put the cans and the trash in the same bag. I gave her a trash bag for the Trash and a plastic bag for the Cans. She just put it in the trash bag anyways. I got mad, like I always do, because I'm sick of this damn house.
And long story short, I eventually said since you won't clean up your room and take the trash up and put it into the trash can, you will end up like mom, a hoarder. She got the trash bag, started crying and went outside. She's been outside for like 2 hours. I'll probably go find her. I hope she realizes now that she should clean up her room. And now I feel guilty, like always when I do something like that. Well, I guess I should stop typing this and go look for her. I just wish I would've stayed in my room. At least then, I could actually have my own bed to sleep in. I don't have my own room, because of The Harry Potter movie with the werewolf. Sorry I had to put it in separate comments, it's too long more than 4,000 characters lol. I will forever hate you J. K. Rowling. Thanks for ruining somewhat of my life. See ya.
And now she won't talk to me like she always does. It hurts that I have to say something to her, but he doesn't understand that I'm trying to make her stop putting trash everywhere and try to clean up. I wish she woul realize that. :(
After years of unsuccessful clean up help we came to the conclusion that we would clean the disgusting mess after my husband's parents passed away.
This task has, because of my flexible availability, fallen to me.
Looking back through the years and with all of the weird things we are uncovering, we should have fought tooth and nail to have my husband's parents declared incompetent.
Digging through this mess has given me a new prospective; the actual victims of hoarding are NOT the hoarders themselves, but those left dealing with the hoarder and hoard. Be it family, friends, neighbors subjected to the unsightly trash and filth and all the diseases and vermin that go along with it.
I can honestly say, every scrap of respect I've had for my MIL of 26 years is gone. I have yet to grieve or even stop for a moment to miss both of his parents. There is too much trash to throw out.
Thank you very much for writing this. It helps me to think through the puzzle pieces more clearly, and to let go of some of the pain.
Take a big belly breath. Fill up your lungs and let your belly go out. This will always make you feel better. You are not the mess. You are a beautiful person. And that's what you have. Breathing deep puts you right back with your beautiful self. I'm sorry you have to live like that. It seems unsurmountable but your best bet is to bring it to the attention of someone you trust. Always take deep breaths to help manage the stress of it all.
My Dad is a hoarder. The hoard is #1 in his case. Thanks for making the codependcy/Al Anon connection. I've recently started attending Al Anon meetings to treat my codependcy. I felt like an outsider because I did not grow up with an alcoholic, nor am I married to one. It's all starting to make more sense. The alcohol is replaced with stuff, and the stuff is always the priority.
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