Looking After Yourself

Be nice to yourself

• No one is perfect. There will be days when you lose patience or feel like everything you do is wrong.
• Try to give yourself positive messages and remind yourself of everything you are doing well.
• It is okay to focus on one day at a time or an hour if you find a particular day very hard.

Take time out for you

• Acknowledge how you are feeling and the impact on your life and your relationships
• Keep a journal and talk to trusted family members, friends, or a counsellor.
• Make a conscious decision to include your needs in your daily and weekly routine
• Be nice to yourself. Remind yourself of all the things you do well.
• Keep up your social contact, plan outings and keep in touch with family and friends.
• Focus on what is possible, on the things you and your loved one can still do.

Build a Support Network

• Join a support group so you can meet other people caring for a loved one with dementia.
• Call our National  Helpline on 1800 341 341 or go online to a carer forum.
• Write down the things you find difficult or would like some help with.
• Talk to friends and family; tell them about things that are going well and what is challenging.
• Find out about Services & Support in your area.

Take Care of your Health

• Eat a well-balanced diet
• Take regular exercise
• See your GP regularly, particularly if you are feeling low, stressed, anxious, or not sleeping.

Talk to someone you trust; a family member or friend. You can also talk to your doctor, a social worker, or a trusted person in your community. You can talk to different people about different emotions at different times, but talking to someone will help.

Call the confidential Alzheimer National Helpline to speak to someone who will understand and be there to listen and support you. Freephone 1800 341 341 Monday to Friday, 10 am to 5 pm, and Saturday, 10 am to 4 pm, email [email protected] or via Live Chat at www.alzheimer.ie

For some, speaking to a professional counsellor can help. You can speak to your doctor about this option. You can find out which counsellors operate in your area by contacting the Irish Association for Counselling and Psychotherapy, IACP on 01 230 35 36 or visiting https://iacp.ie/page

Family Carers Ireland is now offering a free, short-term online and phone counselling service for family carers. If you would like to avail of this service, please contact Family Carers Ireland on 1800 24 07 24.

The De-Stress report is the largest in Ireland to explore the health and well-being of family carers of people with dementia. The study suggests that the needs of family carers in Ireland should be more thoroughly assessed and addressed as urgent.

To carry out the study, researchers at Trinity College Dublin surveyed more than 200 people caring for their spouses with dementia. The Health Research Board, the Alzheimer Society of Ireland and the Medical Research Charities Group supported the study.

What did we find?

Nearly half of the carers in the study spent all of their waking time looking after their spouse, and 15% had given up their jobs to care for their spouse.

Most of the carers took prescribed medicines. Those with more chronic health conditions (such as arthritis, hypertension or diabetes) were more likely to have high burdens and lower quality of life.

Depression and anxiety were shared among family carers, and around a third of participants had difficulty with at least one core caring activity, such as managing money, shopping for or preparing food or managing appointments.

Carers experience a decline in cognitive functions (such as attention and ability to plan) over one year. However, this was not linked to their stress levels or a genetic susceptibility to developing Alzheimer’s Disease.

It is common for people to have feelings of loss and grief as their life and the life of the person they care for are changed by dementia. These changes can have a significant impact on you and other family members.

You are likely to experience feelings of grief as the illness progresses. It can be helpful to recognise that this is normal when a person in your family has dementia and that it is vital to look after yourself concerning these experiences. As a family member at times, you may feel worried, anxious, resentful and overwhelmed.

It is helpful to remember that the person with dementia can experience these feelings and their abilities change and they adjust to their diagnosis.

Adjusting to the changes that dementia brings is a process. It can affect us in many different ways – emotionally, mentally, physically, and spiritually.

Sometimes we can feel that we are managing well, and at other times we can be surprised by strong feelings. These can include anger, guilt, frustration and resentment. This adjustment process is similar to that of grieving – except that the person is still with you.

Such feelings are a normal part of the process of grieving. But it is essential to realise that you may be under a great deal of stress and seek emotional support.

There are many things that can help when you are grieving, including:

• Accepting your feelings. Don’t bottle them up. Let yourself be as sad as you want. Work through your anger and frustration. These can be healthy emotions. Know that it is common to feel conflicting emotions. It’s okay to feel love and anger at the same time.
• Prepare to experience feelings of loss more than once. As dementia progresses, it is common to go through feelings of grief and loss again. Accept and acknowledge your feelings. They are a normal part of the grieving process.
• Talk to someone you trust about your feelings.
• Relieve tension through crying, doing some exercise or perhaps punching a cushion or a pillow.
• Seek information and support about dementia for you and the person with dementia, as it can be a vital step. Family carer support groups, social clubs, day centres and home care can help you to build a support network for everyone. Find out what  services and support are available to you locally by clicking here
• Make sure you see your GP if you are feeling very low or anxious or are exhausted and unable to sleep. It is essential to prevent your usual feelings of sadness from slipping into depression, which is much harder to deal with.

As a person with dementia approaches the end of their life and subsequently passes away, families face dealing with loss and grief as well as the practical arrangements that need to be put in place.

Grief is both a universal experience and a unique experience. Grief does not happen in any set way, nor have any defined stages. Grief is a natural process of reaction and adjustment to loss and change. When we lose someone or something important to us, we grieve.

The feelings and thoughts of grief come and go in waves. Sometimes you may feel you are coping quite well and then experience a burst of grief as you are reminded of your loss.

The truth is we don’t “get over” grief. It is not like having the flu, where you feel very ill and then begin to feel a bit better until you finally return to being your old self again.

Grief is a process that changes us and challenges us.

Most people find that over time and with the help of supportive family and friends, they find their way through grief, and while they still may have low days or difficult days, their grief recedes, and they can pick up the parts of their life that have been put on hold.

The experience of grief can, at times, be painful and confusing. Even if a person has had a prolonged illness such as dementia and death was expected, there may still be a feeling of shock and intense emotions and thoughts. Grief can be experienced emotionally, physically, socially and spiritually.

What can help?

• Know that people may not understand your grief – Your grief is your grief; not everyone may understand the complexity of dementia and the toll it takes.
• Talk to someone you trust about your feelings – This can be a good friend, another carer, an understanding professional, or supportive members of your family. The important thing is that you feel safe and accepted.
• Remember that grief comes and goes – Even though you may be coping quite well most of the time, there may be times when you feel particularly sad or upset
• Combat feelings of isolation and loneliness by developing some new routines

We have a range of factsheets to support families in understanding what happens during late-stage dementia and the emotions of loss and grief that can emerge when caring. We also have an information sheet for people who have been recently bereaved. You can download these resources at the links below. These resources can also be posted out free of charge by calling 1800 341 341 or emailing [email protected]

Following a bereavement, families may need practical information to understand some of the steps they need to take; the following resources can help.

The Citizens Information Service provides the following information sheets free of charge:

• Information for those affected by bereavement
• Checklist of things to do following a bereavement
• When someone dies in Ireland
• Practical arrangements after a death

You can get information on these topics from www.citizensinformation.ie or by calling 0818 074 4000.

The HSE have a comprehensive booklet entitled ‘You Are Not Alone: Help and advice on coping with the death of someone close‘. This book contains practical advice and information on our reactions to death and the various financial and legal matters that must be dealt with after bereavement.

A companion booklet is ‘You Are Not Alone:Directory of Bereavement Support Services’, which lists services such as support groups and bereavement counselling services that are available, as well as providing legal and financial information. You can download this booklet here

The Way Ahead: a resource to support former family carers; developed by Care Alliance and provides tips and suggestions to help with the transition to life after caring for a family member. You can download this booklet here.

If you would like to speak to someone, please do not hesitate to contact our free and confidential National Helpline at 1800 341 341. This service is open six days a week, Monday to Friday, 10 am to 5 pm and Saturday, 10 am to 4 pm.

Life does not just go back to being the same after the death of a loved one. However, the time will usually come when the pain eases, and you feel ready to cope with life without the person who you cared for.

It is essential to give yourself the time and space to grieve. Take things slowly and ask for help and support if you need it from family and friends.

It can take time to feel ready to move on after the loss of your caring role, but there will come a time when you start thinking about what you want to do next for yourself. You may want to learn something new, return to work or start volunteering.

For more information and support, contact our National Helpline on 1800 341 341 or email [email protected]

The booklet ‘The Way Ahead’ by the Care Alliance is a great resource to support former family carers, and you can download it by clicking here.