First, it’s important to note that hoarding isn’t the same as collecting as some people might think. Collecting is intentional and a collector typically has no issues with items coming and going which isn’t the case with a person who hoards.

According to the American Psychiatric Association (APA), an individual with a hoarding disorder has, “persistent difficulty getting rid of or parting with possessions due to a perceived need to save the items. Attempts to part with possessions create considerable distress and lead to decisions to save them. The resulting clutter disrupts the ability to use living spaces.”

The APA goes on to cite that about 2.6% of the worldwide population has a hoarding disorder with rates higher in those over age 60 and those with other psychiatric diagnoses specifically anxiety and depression. The rates remain consistent no matter the country or culture and it occurs equally in men and women with behaviors typically starting early in life and increasing in severity as the person ages.

Amy from Natick, Massachusetts1 had three hoarding family members; two grandparents and an aunt who all lived together under one roof. Her grandfather had a stroke and eventually needed hospice care but, due to her grandmother’s hoarding, he was never allowed back into their home due to her unwillingness to make space for him. Her aunt was also forced to leave for similar reasons due to health.

Each family member hoarded different things including food, clothing, sewing and craft supplies, books, VHS tapes, toiletries and more. Amy says, “There were some parts of the house that you had to walk through sideways and areas that were inaccessible or required hours of moving items to reach such as to access the laundry in the basement. The bathtub was full of stuff for over 10 years and they took sponge baths, washed their hair in the sink or showered after going to a fitness center.” At one point, in order to get an air conditioner into a bedroom, Amy and her father had to get it in from the outside through the window as there was no physical way to get it through the bedroom itself. It was a severe case of hoarding that took years to navigate.

One thing that helped the most were friends. Amy shares, “I found it very helpful to be open with my closest friends about the hoarding challenges I was encountering with my family members. When they offered to help, I accepted the help as long as my grandmother was willing and gave permission. Sometimes people think that hoarding is a small issue so I often needed to educate them about the seriousness of the situation and how quick fixes rarely work long-term. These friends and even other family members were a huge support and source of encouragement to me during this process.”

Amy and her mom provided caregiver support to her grandmother and assisted in helping donate items to useful places as her grandmother eventually realized she needed the hoarding of other family members addressed although, “she denied that her own hoarding was an issue.” Amy goes on to say, “I spent thousands of hours over 12 years helping make the house safer for my grandmother to live there. My mom's friends and my youngest brother and dad also helped out. Cleaning things out was very difficult because important items were mixed inside piles of unimportant items.”

The bottom line Amy stresses is that finding help and support is key as is keeping relationships intact as much as possible which doesn’t always happen in hoarding situations. Amy says, “Knowing that when your hoarding loved one is finally ready for help, you’ll still want to have a relationship with them.”