Within any family or friendship group, caring for an older person involves multiple negotiations with social and health services, but also with other family members and friends. Even if the carer has sole power of attorney or is the sole adult child, the person cared for must be consulted as much as possible and the views of others must be taken into consideration.
It is not possible to map out a path to decide the sharing of responsibilities of caring, but a community nurse is in a good position to help families understand some of the everyday challenges and make suggestions for avoiding any pitfalls. Informal carers are often astonished to learn how many common problems there are. When I talk to groups of carers, someone often comes back to me and says, ‘It is as if you know my family!’. Families are all very different, but in some ways, they are remarkably similar. The differences are less important. The understanding of what it means to be part of a family is the key issue.
Families come in all shapes and sizes. As divorce becomes simpler and less stigmatised, stepfamilies are common. When parents remarry, they create blended families and often share care between more than one household. A carer may be looking after her stepmother's stepfather. In healthcare, familial relations may be described in shorthand as if all caring is between older parents and their sibling children, but people behave as family in more complex ways, even if they are not ‘kin’, that is, related by blood or marriage. This may include neighbours and friends who are so close that they should also be considered as part of the family.
In 2021, Age UK recognised that there are over a million ‘sandwich carers’ in the UK, that is, people caring for an older person while still having responsibility for younger people. Almost 70% of them are women. Although the traditional taboo on men providing intimate care for women may be cited as a reason, other societal issues, such as women's lower financial status, may contribute. It may make financial sense to the family group for the person who earns least to give up work, or reduce hours, to provide care. This is unfair if she continues to bear the financial burden of lost income and pension rights carried forward into her own later years, without support from those earning more.
Those family members who do not take part in day-to-day car, whether male or female, may still want to be involved in decision making. It is usually better for the person cared for if everyone takes an interest. Things can go wrong and if the lead carer is not coping and perhaps making unwise decisions, an additional person to help think things through might be helpful. But they might also be seen as interfering.
If the main carer makes a decision, for example, that the time is right to include paid carers, or to move to a care setting, her siblings might object to her coming to that conclusion and sabotage it. When feelings of jealousy or lack of trust are present because of lifelong sibling rivalry, caregiving decisions can be undermined even if they are in the interest of the person being cared for. Older people do not like to be the cause of family conflict. In these circumstances the ‘wrong’ decision may be made to keep the peace. It might be that for the main carer, the work is becoming too great. The feeling of others may be particularly strong if they are being asked to start a financial contribution to the cost of caring. They may discount the actual cost to the sister of providing all the care and regard it as ‘women's work’, telling themselves that she is happy and that she enjoys it. It might be that their self-interest extends to wanting to preserve the parent's resources, with a view of potentially benefitting from a will.
In caring for an older person, sizeable sacrifices are required from family members which demand commitment, sometimes over a very long period. A crisis may bring old family conflicts back to light. People who have little experience of joint decision-making are trying to make complex and emotional decisions. When a sister does not agree with a brother, she may put it down to a personality defect, giving examples of how he was as a child. Jealousy may be an element in the conflict. There is a question of the disparate investment of each of the adult children. The brother may make a very occasional visit, while having little interest in or commitment to the caregiving arrangements. As the older person is excited by the visit, they may appear to value that novel entertainment over the commonplace tasks that the sister undertakes. She feels undervalued, as well as being tired and unsupported. Living further away and immersed in his work and family, the brother may feel that it is impossible to be more available. When an older relative is becoming frail, the anticipatory grief gives rise to strong feelings, which are not only about money; the cost of care is a significant area that is difficult to discuss.
Disagreements about how care should be managed or where care should be provided mainly fall into two categories – crisis decisions and considered decisions. There is a third situation where ‘stuff just happens’. This is where the family appear to have decided not to decide. No one is prepared to make a decision or support someone else to make it. Quite often this leads to a crisis itself. It is very stressful for a carer if they have been trying to get a decision and it has been undermined by others. It is one reason why having an even number of attorneys is a bad idea. No one has the casting vote if the attorneys disagree about the way forward and an impasse means no decision is made.
Crisis decisions
A rapid decision may be needed, for example, if the person's home is no longer suitable due to mobility issues after a hip fracture, and the hospital is pressing for discharge. The family may have promised that the person will never have to go to a care home setting. The person is determined to go home but there is no way to care for them there. It is too late to make a plan, or to find out what the least worst care home would be. Never having prepared for this scenario, the time that is needed to work out the finances and manage expectations of all concerned is now almost zero. Some of those who should be involved in the decision are unavailable. The discharge from hospital is delayed and as a result, the person becomes further disabled or confused or has a hospital acquired infection, or even a further fall. There may be an intense family negotiation about the right course of action, but there is not much time to think about it. It is important to recognise the importance of emotions at the core of any decision-making process. It would be a bad outcome if the family members fell out with each other. It is clear that the frail older person is near the end of their life and the last thing they would want is damaged family relationships carrying on into the future after they have gone.
Considered decisions
If you suspect that because of your age, sex or relationship, you are very likely to become a carer in your family, then you should start the conversation now with the older person if they haven't already started it themselves. For any of us, even in fit middle age, it is never too soon to think about what you would want to happen if or when you become too old or frail to care for yourself completely independently. We should all make the prudent assumption that state benefits are not going to increase radically in our lifetime. There needs to be clarity about how you will afford care or what you would prefer if there is a choice of statutory care options. Many people try to place an impossible burden on their family by making very specific requirements, such as a promise that they will never go to a care home. It is better to have a conversation about what kind of decision you might have to make on their behalf, find out what they would prefer if there is ever a dilemma and assure them that you will do your best to make the right decision at the time.
There may be conversations that the family start to have without involving the person who will require care: negotiations about who would give up work, who would take the person into their own home, how the cost of caring would be shared between the children and any other issues that may not emerge, but which are worth looking at. The considered options could then be explored with the older person, allowing them to be involved in a realistic choice.
Dispute resolution
The increase in the number of older people needing care has given rise to a parallel increase in the number of family conflicts about decisions concerning care. The person who needs care is at the centre. A neutral facilitator can help find family members find the best solution to the dilemma, and though professional facilitators are available, it may be that a trusted person such as the family faith leader, solicitor, or another trusted counsellor can help families stay together while doing the best they can in a difficult situation. As already said, the family may include ‘kith and kin’ meaning blood relatives, but also other significant friends and neighbours. It is not easy to provide what the person would have chosen for themselves, in a situation that they may not have been able to completely anticipate. I have endless respect for all those who are trying to do this and recognise that the need is only increasing over time.