Healthy living When roles and relationships change due to care needs

When a person develops a need for long-term care, this can mark a major turning point for everyone involved. Very few people find it easy to become reliant on care and support from their family and friends.

Organizing care can be challenging in and of itself. However, strong emotions may also have to be managed when relationships fundamentally shift due to changing roles.

What exactly is a “role”?

A person may take on a variety of duties and responsibilities, for example, in their job or within the family. There are certain societal expectations of how these duties should be fulfilled. A “role” refers to the totality of society’s expectations of how a person should fulfill their duties.

If the allocation of roles changes when someone develops a need for care, all parties need to grow into their new roles. To make this process easier, it’s helpful to consider the range of roles and needs of everyone involved.

What can new roles look like?

In many cases, adult children take on the more parental role of taking care of things for elderly parents who are increasingly in need of reassurance and assistance. However, this doesn’t mean that the adult child fully assumes the role of a parent. Daughters and sons who are taking care of parents may themselves be in need of attention and recognition. However, a person in need of care may be completely unable to meet these expectations.

If new roles are associated with differing expectations, this can give rise to feelings of grief, shame, doubt and anger. These feelings represent a normal response to a challenging situation. Various strategies can help people cope with the new situation. For example, it helps to be aware of one’s own viewpoint and expectations and to discuss these with the other person on a regular basis. This makes it easier to resolve conflict or avoid it in advance. It’s also important to know how and where to seek help when needed. 

A strained relationship can impact the wellbeing of all involved. In order to cope with the various stresses and strains, people need to be aware of the potential implications of changing roles.

Changing roles among partners

There is usually a well-established division of roles between partners. There may also be some aspect of this division of roles that partners are not fully aware of and have never dealt with in an open manner. Changes in a person's health may mean that they can no longer carry out certain tasks for which they feel responsible. It can be difficult to give up duties and responsibilities. Physical limitations and the loss of autonomy can also affect sex life within a partnership. When couples are trying to adjust to their changing roles, it's particularly important for them to talk openly about their expectations, feelings and concerns.

Abuse of power

When someone assumes responsibility for another person, this may lead to them exercising excessive control of that person. On the one hand, the decision-maker may abuse their power in order to enforce their own will. On the other, the care recipient may be overprotected to the extent that they believe they are incapable of doing anything for themselves (learned helplessness).

Care recipients, for their part, may also have unrealistically high expectations of their carers. As a result, the carer's emotional or physical boundaries may not be respected.

Loss of a relationship due to dementia

The decline in cognitive abilities that occurs in people with different types of dementia, such as Alzheimer’s disease, is stressful and painful for everyone involved. When someone’s personality changes due to illness, this can also change relationships and bonds. If the person in need of care feels increasingly alienated due to their failing memory, it can become virtually impossible to discuss expectations with them. For the person providing care, it’s important to be able to grieve the loss of their relationship. Talking with other family members and friends may help.

More information about caring for people with dementia is provided in our article dedicated to that topic. It also discusses options for counseling and respite care for carers.

Children in the role of carers

When parents develop a need for long-term care, many children under the age of 18 as well as young adults feel overwhelmed by the situation. They may fail to access help from others due to feelings of shame and fear. However, it's important for children and adolescents in particular to avoid burnout and social isolation by seeking external advice and support. Younger children may find it especially difficult to recognize and describe the stresses and strains they are experiencing.

Emotional strain on carers

Carers face risks to their health and wellbeing on a number of levels. Physical exertion may be a constant source of strain, particularly for older carers. This is then compounded by the stress and emotional strain of coping with distressing situations.

It can be particularly challenging if, for example, the care recipient:

• is in pain due to their illness
• is no longer able to show consideration for the needs of the carer
• talks about suicide

Facing the end of life can take a huge emotional toll on all parties involved. When a person's role changes in adult life, old conflicts that have long been suppressed may surface. Unresolved conflicts and issues that have not been properly processed can make it more difficult to come to terms with the end of life.

It is generally very distressing if you are unable to meet your family's expectations of you or your expectations of yourself. When faced with an imminent loss, it is also very common to experience strong emotions as a grief response (pre-loss syndrome).

The care recipient, meanwhile, may experience fear and anxiety in relation to their new role, for example, fear of becoming dependent and helpless. When these anxiety-provoking topics are discussed, well-meaning offers may quickly lead to conflict.

Coping strategies and supports for family carers are discussed in the article on mental and physical stress and strain experienced by family caregivers.

First and foremost, you should be clear about where you stand. Ask yourself, for example, why you want to take on a caring role. Do you feel obliged to do so or do you view taking care of family as simply a natural part of life?

Some compromises may need to be made. Clarity should be sought from the outset and any necessary compromises acknowledged. If you spend time caring for parents, you may, for example, spend less time with your children or your partner without realizing it. It’s important to set boundaries so that your own family life is not put under excessive strain.

Another important strategy is to talk to the person who is in need of care about everyone’s viewpoints and expectations. You should clearly set out your boundaries from the outset. Ideally, close family members should have a discussion in advance about what to do should a need for care arise before the need presents itself.

Issues around the need for support should be discussed in a calm manner without any recriminations. It takes a lot of patience and understanding to adapt to a new situation. It's often easier to accept help if you have already faced up to and accepted your own fears. 

This will ideally help you to view the other person from a broader perspective. If you can respectfully acknowledge the other person’s entire life journey, it becomes easier to understand their decisions and point of view. In some cases, it can be helpful to have a professional counseling service or another person you know and trust to act as a mediator.

You should also discuss individual needs and sources of stress on a regular basis to align points of view and expectations. Other ways to help yourself adjust to your new role as a carer include:

• Gathering information about sources of support and advice and points of contact so that you feel more confident in managing care of your family member
• Sharing your experiences with other carers
• Building and maintaining support networks
• Organizing support from professional carers in good time for tasks you do not feel able to undertake
• Ensuring self-care
• Maintaining your own social contacts

If family carers reduce their working hours, the resulting loss of income can be a significant burden to bear and may also negatively impact the relationship with the care recipient.

The Kuratorium Deutsche Altershilfe (KDA), the German Foundation for Elder Care, provides an overview of the financial impacts of long-term care on family members (in German).

Potential upsides

Your personal view of the task of caregiving is also crucial to your ability to adjust to your new role. Providing care to a loved one can be viewed as an act of love and appreciation that is meaningful and of value. A change in the allocation of roles also presents an opportunity to resolve conflicts and experience closer bonds with family members. As the end of life draws closer, it’s important to develop understanding and a capacity to forgive. In this way, both sides can make peace with saying goodbye.

When providing personal care to a loved one, you become involved in very private and intimate aspects of their lives. When confronted with nudity or incontinence, feelings of embarrassment, shame and loss of dignity may be triggered on both sides. As a carer, you may also feel ashamed that there are certain things you don’t want to do or know.

Self-consciousness and modesty are natural and useful. They help people to conform to certain societal norms and set boundaries. However, stronger feelings of shame and guilt can lead to social withdrawal and isolation. For this reason, it’s important to find an effective way to deal with situations that provoke feelings of shame.

The following steps may help both parties cope with embarrassing, potentially shame-triggering situations:

• Firstly, everyone involved needs to be aware of their own personal boundaries.
• Next, it’s important for them to talk openly and with empathy about the situations in which they personally feel comfortable or uncomfortable.
• It can be helpful to put yourself in the other person’s shoes and try to imagine what they may want in this situation.
• Use empathy in determining their preferences and make your own suggestions where relevant.
• Professional support from a third party may be helpful in certain areas.

The Center for Quality in Care (“Das Zentrum für Qualität in der Pflege”, QZP) foundation has developed a guide containing practical tips for dealing with the loss of privacy in family care situations (in German).

Various points of contact provide advice and training on topics relating to long-term care. The first port of call is usually the relevant long-term care insurance fund. Advice is also available from centers run by welfare associations, municipalities or consumers’ associations. Practical training courses are usually provided by care services, welfare associations or hospitals.

You will find detailed information about this topic in our articles Advice and training for carers and Care knowledge for relatives.

In some federal states, care support points (“Pflegestützpunkte”) have been established by the health insurance funds and long-term care insurance funds. These offer support and advice to those seeking help on care-related issues. The ZQP foundation provides a directory of all care support points in Germany on its website.

People with private insurance may find it helpful to contact compass private pflegeberatung GmbH.

The National Contact and Information Point For Encouraging and Supporting Self-Help Groups (Nationale Kontakt- und Informationsstelle für Selbsthilfe, NAKOS) provides information about how family carers can form networks with others (in German).

A directory of housing advice centers in Germany and Switzerland is provided by the National Association for Home Renovation (Bundesarbeitsgemeinschaft Wohnungsanpassung e.V.).

The Federal Ministry of Health provides an online guide to the topic of long-term care (in German).