Letting go without giving up: Preparing for the End of Life

Towards the later stages of the journey through dementia, carers and relatives may be faced with a number of difficult and emotionally-charged decisions. For example, in a medical crisis, questions about the use of resuscitation or various treatment options like artificial feeding or antibiotics can be very challenging for relatives and medical staff to resolve. This section looks at how you can plan ahead for some of these difficult decisions.

Dementia is an unpredictable illness – we can't talk about specific timescales but it will shorten life.

What do you want for the person? And what would they want for themselves?

Many people have very strong views and preferences about the ways in which they would want to be treated in the event of them suffering from a life-threatening illness. Your relative may in the past have expressed wishes and preferences about his or her future care and medical treatment which, because of the progression of the illness, he or she may be unable to communicate later on. A growing number of people are setting down these preferences in the form of advance statements (often called living wills) which state what types of treatment they would or would not want to receive if they were unable to give or refuse consent.

As long as your relative is capable of understanding what proposed medical treatment involves, his or her consent is necessary. It is important to remember that capacity to give informed consent must be assumed, unless there is evidence to suggest otherwise.

If a doctor believes that a treatment will benefit a patient with dementia who is incapable of consenting, the doctor should sign a certificate of incapacity which gives him or her authority to treat the person. Before doing so, the doctor should consult with the carer and anyone else closely involved with the person, to get their views on the person's ability to give consent. Where there is a legally appointed proxy or substitute decision maker, such as a welfare attorney or a welfare guardian with medical decision making powers, the doctor must seek a decision from that person, where it is reasonable and practicable to do so.

The doctor's authority to treat can cover any procedure or treatment designed to safeguard or promote the person's physical or mental health. Treatment without consent can still be given in an emergency without the need for a certificate of incapacity, in order to preserve life or prevent serious deterioration.

The Adults with Incapacity (Scotland) Act 2000, however, says nothing about the withdrawal and withholding of treatment, although it would be considered good practice for the doctor to consult.

The Care Commission stipulates that, on admission to a care home, the family are asked what they want to do about funeral arrangements, resuscitation, etc. This can be distressing at a time when people are already feeling upset but it helps to be forewarned.

Information about the person's past and present wishes and views should be recorded in the personal profile where possible. Recording information about views and preferences about resuscitation and funeral arrangements may seem premature but it can save distress at a later date.

When your relative has died

After the person's death, you are likely to pass through various stages. Although death has to be expected, and you have already experienced a lot of grieving and loss throughout the course of your relative's illness, you may well feel shock when the time comes and may feel numb. Later, you may become preoccupied with thoughts of your relative and feel unable to accept what has happened to him/her. Many people say that they still expect the person to reappear.

At first you may feel relieved that the person is dead. You may then feel ashamed that you have felt this but relief is a normal reaction. You may also feel angry or guilty or depressed, alone and exhausted. These are normal feelings under the circumstances and you need to give yourself time to get back on your feet.

Following your initial reaction and response to the death of your relative, your emotions may change. You may start to experience feelings of guilt, anger, isolation and depression and may feel unable to accept and come to terms with the person's death, even if at the beginning you seemed to be coping well on the surface. The intensity of these emotions can leave you emotionally drained. It is therefore important not to ignore them, but rather to acknowledge them and let them pass. In this way, you will be able to grieve their loss and carry on with your life, knowing that you did your best.

Looking after yourself

To survive the grieving process you need to look after yourself. Even when you are coping well, there may still be times when you feel upset and depressed, even for months or years afterwards. Talk about your feelings to an understanding professional, to other carers, to a trusted friend or to members of your family. Don't bottle your feelings up.

Try to persuade friends to drop in for a chat or to phone you regularly. You should avoid making any important decisions at this time when you are likely to be feeling shocked and vulnerable.

Accept that you will have good days and bad days, and the bad days may well outnumber the good days. Special dates such as anniversaries and birthdays can be particularly hard to cope with – try to arrange something positive to do on those dates.

Pay attention to your physical and mental condition. During the grieving process, people have a higher risk of becoming ill or depressed. It is therefore important that you look after your health and that you contact a doctor should you feel ill or depressed.

Keep in contact with family, friends and other carers. Speaking to people who know and understand you will help prevent you from churning over depressive thoughts and doubts. For example, you may start to ask yourself if you could have done more for the person and think about times when you might have shouted or got angry with the person. By talking with others who understand, you may be able to release some of the tension you are feeling which may have built up over the years and start to see things more in perspective, remembering the good times rather than blaming yourself.

Once some time has passed the memories of the impact of the disease will become less vivid and you may find that you are able to remember the person as he or she once was before the illness set in.- even if this seems unlikely immediately following his or her death.

When my mother died after ten years of Alzheimer's disease, she was very different from her real self. In a way, I felt I started to lose her long before she actually passed on. But she still left a huge gap in my life. It's now two years since her death, and I have managed to pick up the pieces of my own life again. Even though I will always miss her, the worst feelings are past now and I find I can remember her as she used to be before she got ill

Staying in touch with the care home

Where you have played an active role in the care of your relative while he or she was in the care home, you may find it hard to adjust to no longer visiting the home. You may have developed relationships with members of staff and other residents. It may be possible for you to stay in touch through attending a carers' group where you can share your loss with other carers; or you may be able to participate by becoming a volunteer or helper or a fundraiser.

Letting go without giving up: continuing to care for the person with dementia