Caring for older loved ones

Prof. Des O’Neill describes how family roles change when people become older and less able to care for themselves

When an older person becomes frail, roles will inevitably change. The biggest adjustment will be for their spouse or partner. This can occur in many different ways, and it is always a wonder to me as a geriatrician that people cope and adapt to this as well as they do. I do not mean to minimise the difficulties that might be involved, but in general most relationships have an in-built contract that implies mutual support.

Adult children may have the most difficulty in adapting to the role of carer. In addition to whatever form of relationship you may have had with your parents, you now have to try to forge a new relationship which tries to support them in their chosen way of dealing with their frailty. In many ways, this new style of relationship will test both your bonds and the difficulties that you both simultaneously experience as part of the parent-child relationship. You cannot change the way that your parent is, and a large part of the skill of caring lies in changing your reactions so that you ease the inevitable tensions that may arise. It is most important that you recognise that your primary role is as a collaborator rather than a director. Even if your role becomes more prominent as your parent’s frailty develops, maintaining the sense of your role as collaborator rather than the main driver is important.

It is very important to avoid any sense that this role is akin to parenting. Your parent is and will always be your parent and you will always be their child. It is very dehumanising for an older person to be treated or spoken to as a child. No matter how much disease and age may have changed your parent’s body or mind, no matter how much or how little they can do or think for themselves, and no matter how much you’re doing for them, they are adults and need to be treated as adults. Your parent has a lifetime of experience and skills and will find their own ways of dealing with frailty. You may not agree with these or even think that they are foolish, but your parent must be let do their thing in their own way to the greatest extent possible. You will only give yourself grief and aggravate the tensions and downsides of the parent-child relationship by not recognising their adulthood and life experience.

This brings me to the next step, which is the realisation that once you and your parent have ensured appropriate assessment, treatment and services, there are in essence only two things which can potentially change in the parent-child relationship. Either they can change, or you can change. Even though you may be providing a lot of your time, energy and love, it is vital to emphasise that is less likely that the older person will want to, or even can, change their way of doing things. You need to put yourself into your parent’s shoes here: they are still your parents in their mind, and this will not change unless they see a clear reason that suits them. It is you who will need to change your style and way of thinking and doing things, and this is one of the keys to reducing the burdensome elements of caring. When you are under pressure with your own workplace, young family and other commitments, it is very tempting to try to bargain with or change your parent’s way of doing things. Difficult as it may be, now is the time to realise that you need to come to terms with a situation that is not quite as you would wish it, and that has many imperfections, but which represents how your parent sees it.

A third point is the importance of maintaining independence for your older relative or parent. It is tempting to step in and help people when they have difficulties carrying out a function such as cooking or cleaning or going to Mass. Unless called upon, stand back! While at all times it is worth discussing whether an assessment might be necessary for any difficulties with everyday life, maintaining independence, even if the task is done slowly and seems to be burdensome, is critical to maintaining quality of life in later life. This independence is important at several levels. The sense of having control over your life is an important factor in psychological well-being. The very activity in itself, even if done more slowly and clumsily than previously, maintains physical function, fitness and capabilities. Intervening and removing these tasks, usually with the best of intentions, may unfortunately add to your older parent’s sense of helplessness and dependency. If your parent seems to be suffering distress while carrying out these activities, discuss and negotiate with them whether they might consider some aid or help. In general, do not step in and assume responsibility for the task without discussion, negotiation and agreement.

It is only when there is a significant safety issue, or when dementia is so advanced that your parent loses capacity to make rational decisions or understand their options, that you might need to step in and make decisions for a parent, such as bringing them to the doctor when they are ill, ensuring that gas and electricity bills are paid or have a car immobilised when they can no longer drive safely. However, these are exceptional, although not uncommon, circumstances and in general you will help yourself and your older parent by trying to make sure that you are not acting in isolation when this happens.

Help from family, assessment and advice from your family doctor or a geriatrician, and support from a priest can help you to gain insight and perspective. Involvement with a carer support group can also be very valuable in framing your mindset to understand the situation and get the balance right between your parent’s priorities of independence and risk over your priorities of health and safety. Don't forget your parent is usually more interested in living fully than in living longer.

Tenacity allied with tact is important. As you will learn, the squeaking wheel gets the most oil, and the response of the system varies enormously. For all that you may have a superb response from the public health nurse, you may also find the health and social care response melting away when they discern a caring family. Firm and tactful pressure is important, and will need to be ongoing.

Finally, caring is one of those tasks and activities which is often not openly recognised by the person being cared for. Indeed, you may find that the frail older person may vent their frustration and anger over the disability and frailty on you, the carer. In a perverse way, there is an element of this that is a sign of love and trust. In the general run of things, we usually put on a brave face with health and social care workers, and as well as with acquaintances. It is only with those we love and trust that we can let our guard down. This can be distressing for you as the spouse and carer, or for an adult child. You will, in time, find a balance between allowing the older person to vent their frustration and the very important task of setting boundaries for what is and is not acceptable behaviour between you both.

The task of caring is one that we often assume unconsciously and gradually; the exception arises from a significant stroke or from the death of a spouse who had been caring up to that point. We come to it with a range of attitudes, previous experiences and all the complexity of relationships between adults and their children. For more people, the caring role is something that we assumed would happen at some stage, but it is always a surprise when it does. In my experience, most carers wish to undertake their care, but may feel under-supported by some of the rest of the family or by society. It is this element of compulsory altruism which can compound the difficult side of caring. Irish society has not clarified its duty of care to those with disability and frailty. Part of the frustration of caring can be a sense of failure of solidarity from society and community. For you as carer, in the immediate future, all you can do is maximise your support, reflect on and reshape your role, and adapt your philosophy. In the longer term, get involved and try to change the system. Join an advocacy group, and make your community and society aware of what it needs to do to ensure that your parent’s care can be carried out with adequate support and dignity.

*Professor Des O’Neill is a consultant geriatrician at Tallaght Hospital in Dublin. This is an extract from his latest book Ageing and Caring: A Guide for Later Life published by Orpen Press.