How to cope when the carer goes first

It’s an anxiety many adult children of elderly parents share – if one relies on the other for care, what happens next?

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Many people reading of the death of Timothy West at 90 years old this week will be wondering about how it will be felt by his wife, Prunella Scales, 92. As chronicled in their brilliant television series Great Canal Journeys, she suffers from vascular dementia and almost until his death West looked after his wife at home, with the help of a live-in carer, showing the tenderness we would all wish for from a partner in the same situation.
But what happens when one half of a couple is reliant on the other for care, and then that person dies? What is the reality when the siblings gather around the table and ask: “What are we going to do about mum (or dad)?”
It can be extremely daunting going on government, NHS and charity websites for advice, faced with downloading complex PDFs about care, all at the same time as dealing with the monumental emotional and practical aftermath of the death of a parent.
Here is a checklist of what you need to know if you are – or ever might be – in this situation:
“The first thing to say is providing care for a loved one is always the choice of the person concerned,” says David Broome, an advice officer at Age UK. “There’s no sort of formal obligation or anything like that. It’s if the person is willing and able to do that it’s basically up to them.”
Care can take many forms, he points out. “You might just be having a cup of tea or it can range to something more extensive, where you’re doing personal care and you’re looking after all and everything that that person needs.” It can also cover advocating on their behalf even if you aren’t present.
You can’t discuss any details of a person’s care, treatment or history with their GP without their consent, says Age UK’s Rachel Freeman. However, she adds: “If you have concerns, you can raise those concerns with the GP.” She advises telephoning or emailing. “The GP is still not going to be able to share any details, but they can get a wider understanding of their patients.” This could be useful in terms of communicating issues that the person themselves is reluctant to discuss or is in denial about, such as memory loss.
“The other option, of course,” she points out, “is getting the person’s consent to speak with the GP.” They can give this provided they have mental capacity. This is the best course of action, because you will then have access to more information.
“Quite often people on the outside perhaps weren’t [fully] aware of the role that the deceased person did play,” points out Freeman. This can apply to administering complex sets of medications. Your first port of call for good advice is the community pharmacist, says Freeman. (This is usually the pharmacist associated with the GP practice.) Options may include a medication review as well as practical measures such as setting alarms as reminders to take their tablets.
Another way of helping is to get proxy access. “You can request proxy access or third party access,” says Freeman. “This is where the person themselves gives consent to another person to manage their [medical] services, largely online.” This means you can manage the person’s appointments and repeat prescriptions on their behalf.
This could be a way of being helpful even if you’re not present for regular cups of tea and hands on help. There is a proviso, which is that if the person hasn’t got mental capacity this may be different, as they can’t give consent. That said, says Freeman, even in this case “it may be that a ‘best interest’ decision is needed, and that is about having that conversation with the GP again. NHS guidance does state quite clearly, in terms of proxy access, that if the person doesn’t have mental capacity then you can have that conversation”.
“In that situation, the person’s local council might have duties to meet the person’s needs,” says Broome. “So if they’ve got social care needs or personal care needs, for example, councils in England have certain duties towards people in that situation, and they might have a duty to arrange and help pay for the care that person needs.”
More often it’s something in the middle, he says. “There can be situations where the older person has got family members who are willing and able to do some of the care, but not all of the care, and that’s where the council might step in and provide [care] and might have a duty to do so. So it’s not one thing or the other.” Do note, however, that an obligation to provide care is not the same as an obligation to fund the care.
“One important starting point for somebody in that situation who has needs would be to seek a ‘needs assessment’ from the local council.” This is the first point towards determining whether or not the council has any duties towards that person either towards arranging care or helping to pay for the care.
To arrange a needs assessment you need to call the social services department of your local council and request one. Although you may be referred by a GP or other health professional, you can also refer your relative yourself. You must have the person’s consent to this, although if they haven’t got mental capacity, for example if they have dementia, you may, again, be having a “best interest” conversation.
Depending on the needs of the person the assessment may be face to face or on the telephone, with a social worker, occupational therapist or other appropriate person. The aim, simply is “to find out what person, what person’s needs are, what forms of care and support might be appropriate to ensure those needs are met. Then they will also use the information from the assessment to determine whether or not your needs meet the eligibility criteria for there to be a duty of the council to meet them.”
There are two scenarios, says Broome. If the person has the mental capacity to manage their own finances, but finds it difficult, then helping them is seen as a form of care. If the person lacks mental capacity to make their own financial decisions this is different and no one can make financial decisions for them unless they have formal legal authority to do that.
If a person hasn’t made a LPOA while they still have mental capacity and now they have lost capacity, it may be necessary to apply for someone to be granted legal authority to make financial decisions for them. The is usually a “deputy for personal welfare” who is appointed by the Court of Protection, a process that can take several months. Once appointed, this deputy can make decisions for the person on a similar basis as power of attorney which means taking decisions in their best interests.
It is best to apply for an LPOA as soon as possible. You can do this online or through a solicitor.
The main form of help with care costs is through your local council, and in most situations, their financial help is subject to a financial assessment or means test. The basic criteria is if you have got capital of less than £23,250.
“If [your parent is] living in their house, it doesn’t include the value of the house,” explains Broome. “However if they move permanently into a care home, potentially the means test can include the value of the house, except in particular situations where certain categories of people are still living there. ”
The other categories include your spouse, a relative aged 60 or over, a younger relative who is disabled, and under 18s but in all cases it has be a prior residence. “The rule is that [they] have to have lived there since before the person moved into permanent residential care.” For more information, see Age UK’s website.
Care encompasses a range of roles and services which include:
Broome advises: “Something else to know is that if you need care and you are not going to be in a care home, and your needs meet the eligibility criteria, the council has a duty to arrange care for you even if they aren’t going to be meeting the cost.”
This is not necessarily less expensive as you pay for the care itself along with the cost of setting it up.
The main alternative is to find your own care from a care agency.
There is one exception to the means testing rule: “Disability equipment – aids and adaptations – are provided for free as long as the council agrees your needs meet the eligibility criteria. So you can have a million pounds in the bank, and the council might have to still give you some handrails.”
Get organised. Sometimes, if you live far off and don’t see them regularly, you can be surprised by the levels of need. “Perhaps if [people] haven’t seen their relatives in person for some time, they haven’t really realised the nature of their needs until they were face to face,” says Freeman.
She adds: “There’s a real importance of thinking about what might happen in the absence of the carer. It’s about having those plans in place if you do rely on someone for that level of care. It’s not always that easy in terms of family being spread all over the country. But it is a good option.”
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