My sister's secret - Diogenes Syndrome

Hello
My sister passed away in December of cancer. She had been ill for 2.5 years so we had time with her. I wouldn’t need help with this loss only for what has been revealed since her passing. Well loved popular kept all the friends she made throughout life, lived 10 mins drive from my brother, his wife and kids. Helped everyone. Etc. She was very overweight and I think a doctor 18 years ago telling her she needed to lose weight meant her and healthcare professionals were done. (She told me when she became ill, she hadn’t seen a doctor in 15 years.) So here it is - my brother was executor of her will. He entered her house and quickly retreated! All those tv shows regarding hoarders - well it was under our noses all the time. The house was stuffed with rubbish, the vents sealed, the door blocked (she used the side door). This is more than hoarding. All the hoarding shows talk about compulsive buying and keeping things for sentimental reasons that don’t make sense to others. My sister wasn’t always in the shops so this didn’t fit, and the hoarding shows didn’t usually mention human waste so I explored further This was self-neglect. My sister kept food waste and human waste as well as everything else. It took £4,000 to clear and clean when my brother could find someone to agree to do it. My brother’s way of dealing with it? “It never happened”. My sister’s life is in a landfill. I need to share anonymously to honour her memory. We were both sexually assaulted by a family ‘friend’ when around 7 years old. I had repressed memory and didn’t recall this until I was 15 years old, when this man’s name was mentioned. It came flooding back to me when I slept on the thought that the mention of his name troubled me. I guess that saved me in some way. I blame this for my sister’s illness. I will keep her secret as I won’t have anyone judge her. But any thoughts on how I process this would be very welcome. Thank you.

I’m so sorry for the loss of your sister. It must have been a added shock to find her house in such a situation. Remember the love, as that’s all that matters in the end. Take care

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Hi Seakelp-So sorry for your loss and the compounding circumstances around it. Sometimes things we never knew about the people closest to us, are revealed once they pass on. The shock of these revelations only adds to our grief, confusion & despair. Hoarding is an illness, a “secret shame” that the hoarder will conceal at all costs. It is not unusual for the hoarder to keep everyone (including family) at arms length. Appears that your sister built a fortress around herself, as a form of protection (based on your mention of abuse, this is understandable). I take it your sister would not allow anyone into her home, thus you or your brother had no way of knowing the gravity of the situation.
You are acknowledging it, and this is the first step. Your brother is handling it differently, but this is his way of coping. You must be experiencing a myriad of emotions, and surely some are quite distressing. You are grieving not only her death, but the "“hidden” existence she lived prior, something no one would want for their loved one. She avoided doctors as you say, again her choice, and kept so much from you. You must find a way to process this information in the healthiest way possible. Coming to this forum was a good choice. Here you can say anything with no fear of judgment. Have you considered counselling? Again, everything would remain confidential in that setting. This forum has been my safe haven, since losing my beloved sister, also to cancer. I’ve also found therapy helpful (for me).
You are in early grief, and must be gentle & patient with yourself. I suggest trying to remember the good times you spent with your sister. Her “material” life may be in a “landfill” but the history, love, sisterhood, and connection you shared, is not part of that rubbish, and will be what remains. That can never be tainted.
I am grieving my beloved sister too, and admire your desire to honour your sister’s memory by sharing with us. Take care and post again. Many will be here to listen. Xxx Sister2

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Daffy2, thank you so.much for replying. I did that at first, I’ve known since January. But I realised I was compartmentalising it at the time and I had to bring it out and take a look at her life as it was. But I will get back to remembering the good times soon. She was known and it was the main thing that people talked about at her wake, for helping so many people. I just always wished she took better care of herself. I thought her weight was the biggest problem. Thanks again.

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I’m also hoping my post may alert people that someone they care about may need intervention. My sister had lodgers for years and I only knew they were gone in 2017. They may have been gone for a good while I didn’t ask. I live in UK, my sister lived in Ireland. My brother and his family live 10 mins drive away, my father 30 mins away. She always came out to see people and even through treatment nobody got further than the driveway. Please if you know someone who doesn’t allow anybody in, get in there. Or at least get them to open the door. My sister’s letterbox and vents were sealed. Thank you.

Hello
I am sorry for your loss, yogurts story is similar to mine and I hope you don’t mind me replying.
My sister died 2 weeks ago , she had been ill for over 10 years with cancer unknown to me. I found out she was in a nursing home a few weeks ago and I tried to visit her, she never got back to me I left a message and phone number.
She also was a hoarder and her house and garden is full of stuff and she also has a garage full of mostly rubbish.
She had been threatened twice of eviction as she never looked after the house, she went shopping , mostly in charity shops where she would buy things she never used. In the garden there are plastic storage boxes filled with China.
I have had someone to look at clearing the property they have quoted me £2,000, I am going to try to clear some of it donate it to charity give it away etc to bring then cost down.
My brother and sister have left me to sort it all out, as they have said I took the responsibility on my problem.
I hope you don’t mind me sharing this as I wanted you to know your not alone,
I believe my sister had suffered abuse when she was younger and this was her way of coping.

Dear Maggie1,
This world of ours’ is in such a mess. Sometimes we hear of our own family members who haven’t been able to cope in every day circumstances. It must be terrible to learn of your sister’s illness after she has passed away,
You are not alone, in all this,
Take good care of yourself.
MaryL

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Thank you
Her funeral was today and it was really lovely how some of her nurses who looked after contributed towards the service, a beautiful tribute was written by one of her nurses.

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Maggie, so sorry for your loss.
Thank you for responding to my post. Our sisters just simply had different wiring due to traumatic events. The stuff made them feel safe and in control. I know my sister’s immune system didn’t have a prayer of recovering from the cancer in that house. She was stage 3 before she sought help. I really believe that after my father passed away in Nov 2016 (our mother died in 1987), and my aunt passed away in Oct 2016 that this just compounded things. In a way it was inevitable. I could see signs of it going back 30 years. They say it all starts from age 11, usually in women and in those that live alone. Just remember it hurts us to think how they lived more than it hurt them. To them they built fortresses to feel safe. Our sisters are safe now. We were both lucky nothing bad like a fire or accident happened in their homes. Remember the good times and all that stuff - it’s just stuff. Do what they couldn’t do and let it go.
Good luck and once again I’m so sorry for your loss and am grateful you got in touch.

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