I care for a close family member who suffers from a chronic anxiety disorder that manifests itself chiefly as Chronic Hoarding Syndrome but also as being unable to make even simple everyday decisions without catastrophising, asking lots of questions, and seeking advice before a decision can be made.
This is a very difficult condition to deal with as a carer and there is little support for those who care for people who suffer from chronic hoarding. It is especially difficult for people who live with a hoarder as you must live amongst the hoard with all the problems that it brings. Most hoarders live alone as their partners or family members can’t live with the hoard. It is very challenging. You can’t get rid of stuff because the hoarder stops you, and if you do the hoarder only acquires more stuff to fill the space. I find I am often prevented and have to argue to be able to get rid of my own things such as old clothes etc.
Living in a house full of stuff is suffocatingly uncomfortable and depressing. Simply getting rid of stuff is not the answer. The hoarder only acquires more. Trying to get rid of a hoarder’s stuff whilst they are still acquiring is like trying to empty a bath with the taps still running. Keeping a house clean is very difficult when a hoarder lives in it and there is a serious fire risk. Hoarders are usually ashamed of their homes and won’t let people in. This includes trades people to repair or service things and carry out gas safety checks. Sometimes the trades person refuses to enter the hoarder’s home as they regard it as an unsafe working environment.
There are various treatments for hoarding syndrome offered by both the NHS and privately and we have tried many of these over the past ten years. None have been successful. Indeed I have met many people who suffer from hoarding syndrome but none that I can say have been successfully cured of the disease. Most treatments are based on CBT and concentrate on getting rid of stuff with help. The problem is the hoarding usually returns once the treatment ends; often when some stressful crisis occurs in the hoarders life. I believe this is because they are treating the symptoms and not the root cause of the disease, which is the underlying anxiety disorder that causes the hoarding behaviour.
I have not been able to find any statistics that show how successful current treatments are. Figures that show how many hoarders stop their hoarding behaviour after CBT, what the relapse rate is, and if they go on to present other mental illness such as OCD after treatment, are important but do not seem to be measured. Such figures would be readily available for medical treatments such as cancer so why not for mental illnesses? It seems to me that the treatment of mental illness is still in the dark ages.
Living with a hoarder is very stressful and one of my ways of coping is to try to learn more about it and take part in research that will hopefully one day produce a successful treatment, or better still a cure. I say a cure because I don’t believe symptomatic treatments of Hoarding Syndrome can be successful; if the hoarding behaviour is suppressed the underlying anxiety disorder simply presents itself as a different symptom such as OCD for example. I have taken part in research done by Bath and Newcastle Universities and by the Maudsley Hospital in London.
There are lots of support groups for Hoarders, but mainly in the London area. These help hoarders by providing them with a social life with other hoarders and practical support if they face legal proceedings or eviction due to their hoarding. Hoarders can however in some cases become too dependant upon the support groups; they fear losing the friendship it offers and being lonely if they stop being a hoarder. So support groups for hoarders are useful but unless they are properly run can hinder a hoarder’s recovery.
I think support groups for the carers of hoarders would be a good idea as it may help to keep the carer living in the same house as the hoarder if they share the same home. It would also help the carers share experiences of things that help them cope and let them know they are not the only one in the world trying to deal with this problem.