Dr Maree Todd, a geriatrician for Auckland Hospital and advisor to Bupa Care Services, says Mary J's experience with her Mum's hoarding can be tricky to deal with.
"This is the story of someone with a hoarding disorder. These situations are always complex, have no simple cure, tend to develop over a long period, and cause frustration and distress to families, neighbours, and health professionals alike."
"Often the situation looks quite shocking to family and ‘outsiders' and they want to do something quickly to ‘fix' the problem. Offers of help are usually met with refusal and genuine distress."
When it's a problem
Maree says hoarding may be part of someone's personality and the way they have always lived, or the result of illnesses such as obsessive compulsive disorder, lack of motivation in major depression, delusions caused by schizophrenia, or the effects of dementia. "Sometimes we see people who have always been hoarders, who then get into trouble with the combination of frailty, medical illness, or dementia. Sometimes the person's partner keeps things in check, and when they die or become unwell themselves, the situation gets out of hand."
How to help
Getting through the front door for a visit can be a major first step to support someone with a hoarding disorder. Befriending the person and getting their trust is essential to making a diagnosis, setting up support, and managing change without causing distress and harm, she says." People often collect things due to fear of not having enough, and having a huge cleanup can be very traumatising."
"Sometimes we ask our care workers to just go in and visit, have a cup of tea, and get to know the person. It may take time for the person to allow them to do any housework, and then the priorities might be clearing a safe path between the bedroom, toilet, and kitchen; removing rotten food to reduce the risk of food poisoning; and arranging a safe food supply."
Workers vulnerable too
She says it is beyond the scope of home care agencies to do major cleanups. "Families often have more ‘moral authority' to do mini cleanups than strangers from an agency."
"It's difficult to comment on the role of the home help in contacting the family, as they may assume the family is visiting and aware of the situation. If a worker is concerned, I would suggest they liaise with their supervisor and/or the person's needs assessor, and these people may need to contact the family."
Home care staff are often in vulnerable situations themselves if a client is suspicious. If they throw anything out they can open themselves to allegations of theft by the person and their family. "One man's trash is another's treasure!" Maree says.
"Home environments like the one described are distressing to home support workers too, and can be unsafe."
Compromise and acceptance
She says it is very difficult for family, neighbours, and friends to watch someone live a life they would not choose. "If the person has always lived like this and now has dementia, we need to be more respectful of their choice, as this is ‘normal' for them."
"If the behaviour is a significant departure from the person's usual impeccable standards, there is more urgency to intervene."
Risks to the person have to be balanced by the benefits of change or forcing a move. "To use the Protection of Personal and Property Rights Act to force a move, the person needs to be unable to understand their current situation, be unaware of their options, or be unable to see the consequences of their decision," says Maree. "Even if this is the case, under the Act we should be using the least restrictive means to support that person." Personal Orders (enforcing an Enduring Power of Attorney for Personal Welfare) might direct the person to have their kitchen, bathroom and bedroom cleared, and have home help to maintain this and provide food. If these steps fail, the person could be moved to more appropriate accommodation, but the hoarding behaviour may well persist, she says.
Tincture of time
Generally the ‘tincture of time' will help to resolve the situation. If the person has dementia, their capacity to decide will deteriorate, they may become more accepting of help, or their physical condition may worsen to the extent that the balance of risks and benefits tips in favour of leaving home. Maree says a crisis is sometimes required before things change. The person may see this as a success ("I stayed at home right up until I broke my hip") while their family will see it as a sign they should have moved earlier!
"Whose hip is it?" Maree says. "The risk of falling and fracture may be the same in another environment, or even higher if it is unfamiliar territory." "What is essential is to put systems in place to ensure people are not lying on the floor injured for any length of time if they do fall or are unwell. Medical alarms and frequent checks can reduce these risks."
Supporting frail elders ... advice from Dr Maree Todd
Trust your gut instincts. If you think things are not right, get alongside your parent or friend and investigate. Be gentle, non-judgmental, and don't argue. Offer help and persevere. Plant ‘seeds of ideas', gently encourage and, with luck, they may take up your ideas as if they were their own!
Be proactive about booking GP appointments and taking the person to the doctor, optician, podiatrist, etc. You can respect their privacy by remaining in the waiting room. If you have genuine concerns, talk to the GP. Make an appointment to see them yourself if necessary. It is perfectly ethical for you to pass on your observations and concerns. The GP will need to respect your parent's privacy according to the situation. Or, put your concerns in writing and the GP may visit your parent, or refer them to a specialist.
Make sure you really understand what is going on. Why did the health professionals recommend that Mary's mother return home? They may have had no medical or legal grounds to do otherwise. Ask for a family meeting; ask for information in writing. Try not to let your distress get in the way of good communication.
Always get an assessment from a Needs Assessor and the local health service for older people before moving your relative. You need their advice to get the right level of care, otherwise it puts your relative and the facility at risk.
If you notice a hoarding tendency, work with your relative at an early stage to keep control. Seek advice if this is anything more than a lifelong trait.
Write down what you think the worst things that could happen are.This might help you solve problems or put things into perspective. Contentment, food, warmth and safety come before cleanliness and good housekeeping. As Quentin Crisp once said, "There is no need to do any housework at all. After the first four years the dirt doesn't get any worse."
Photo: Shutterstock.com, Sarkelin