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.