Alzheimer’s disease affects not only the person with dementia, but the entire family. The greatest burden is placed on the caregiver. The personal and emotional stress of caring for a person with dementia is enormous and you need to plan ways of coping with the disease in the future. Understanding your emotions will help you successfully cope with the person’s problems as well as your own. You are important in the life of the person with dementia. Without you, that person would be lost. This is why it is essential to take care of yourself.
Here we look more closely at your emotions and needs:
It is common to feel guilty for being embarrassed by the person’s behaviour, for anger at the person, or for feeling that you cannot carry on and are thinking about placing him or her in a nursing home. The decision to move someone you care about or love into a nursing home is a difficult and painful one to make. Caring for someone with dementia can become a 24-hour occupation and there comes a time when short breaks of respite care will not provide sufficient relief. Eventually, you risk damaging your own health if you do not consider moving the person to a home, where there’s 24-hour help.
You may find it useful to talk to other caregivers and friends about the feelings of guilt. Just because the person you are caring for goes to a nursing home, it does not mean you give up your caregiver responsibilities. Indeed, the care home may be grateful for your help at meal- or bath times. Continuing to help in this way will help relieve your feelings of guilt.
Many caregivers withdraw from society and, along with the person with dementia, stay confined to the house. Being a caregiver can be lonely – you may have lost the companionship of the person as well as social contacts, because of the demands of being a caregiver. Loneliness makes coping with the problems of caregiving harder, so try to stay in touch with friends, and see if they can offer extra help. Explain the problems of dementia and that they, as friends, can help by giving you, or the person with dementia, some companionship.
Maintain your own social life and take breaks from looking after the person. This will give you time and space to recharge your batteries and help you feel better about yourself. Consider joining a support group. Here you will find people with similar problems who can help you get over the rough patches and provide a social setting where you can talk freely to fellow carers.
It is important to remember that you’re not perfect. It’s normal for you to lose your temper and get angry at times – as do all other caregivers. Your anger may be mixed. It may be directed at the person, yourself, the doctor, or the situation, depending on the circumstances. Try to distinguish between your anger about the person’s behaviour resulting from the disease, and your anger with the person, as this will help you to cope better. Try to understand the behaviour that is upsetting you and see if you can stop or reduce it, as it will not help either of you to lose your temper. If you think you are going to lose your temper, go into another room or into the garden and give vent to your feelings away from the person with dementia. It may be helpful to seek advice from friends, family, or a support group. Sometimes people feel so angry that they are in danger of hurting the person they care for. If you feel that way, you must seek professional help. Many local support groups have caregivers’ contacts, people you can talk to and get advice from. Use them to get help when you need it.
Because of Alzheimer’s disease, you may feel that you have lost a companion, friend or parent, and grieve for the way things used to be. Many caregivers find themselves shifting between hope and despair, thinking the person may get better, then knowing otherwise. Also, because dementia is progressive, just when you think you have adjusted, the person may change again. It can be devastating when the person no longer recognises you. Try to focus on what makes life as pleasant as possible for you both, and look for the parts of the person’s personality that still remain. It is important that you find someone to talk to. Sharing your feelings with family, friends and other caregivers is one way of coping with the grief. Many caregivers have found that joining support groups is a good way to get help and encouragement to keep going.
For some caregivers the immediate family is the greatest source of help. For others, it is the biggest source of distress. You may feel that you have been left to cope on your own as a caregiver, which can lead to bitterness and resentment. If you are feeling distressed because family members are not supporting you, try to find out why they’re not. It may be helpful to call a family meeting to discuss the care of the person.
If you can’t get help from your immediate family, try to get help from elsewhere. Accept help from other family members and do not take on the burden of caring alone. Try to arrange breaks from caring to give you the respite you need. You may find that by looking after yourself, you feel less stressed about the lack of family support.
You need to share with others your feelings about your caregiving experiences. If you keep them to yourself, it may be more difficult for you to look after the person with dementia, as you may become resentful or angry. Try to think ahead and have someone to turn to in an emergency.
You will most likely find that your friends have not stopped liking or caring about you, and would probably be quite happy to listen or help if you let them know how. Try to accept support when others offer it, even if you do feel you are troubling them.
If you accept that the problems and feelings you are experiencing are a natural response to your situation, it will be easier for you to cope. If you do not want to bother your friends, seek professional help from the doctor or the local support group.
Taking time for yourself
It is essential that you make time for yourself. As a caregiver you risk isolation by looking after someone with dementia. This can cause loneliness and sometimes anger or resentment towards the person with dementia. Taking a break allows you to spend time with others, enjoy your favourite hobbies and, most importantly, enjoy yourself.
The number of dementia-care and day-care services is growing. One of these could provide a safe and comfortable place for the person with dementia, allowing you time to yourself or with the rest of your family. Use the support available to you, so that you can have a rest.
Alzheimer’s SA has a few lists of such places – contact your local Alzheimer’s SA office, or the national helpline 0860 102 681, or email us at firstname.lastname@example.org, as we may have a list of such services in your area.
Don't blame yourself
Do not blame yourself or the person with dementia for the problems you encounter. This is particularly hard if the person doesn’t remember who you are, or is violent. Remember, the disease is the cause, not the person.
If you feel your relationships with friends and family are fading, don’t blame them or yourself. Try to find what is causing the breakdown and discuss it with your friends and family. These relationships can be a valuable source of support for you and the person with dementia.
Knowing your limits
How much can you take before it becomes too much? Looking after someone with dementia is a demanding role, which may be complicated by:
- your own physical or health problems
- lack of sleep
- financial uncertainty
Most people learn how much they can take before caring becomes too demanding. If your situation is too much to bear, take action, seek additional support and call for help to prevent or avoid a crisis.
Seeking and taking advice
Learning to accept help may be new to you. More often than not, family, friends and neighbours may want to do something to help you and the person with dementia.
Self-help groups (a group for caregivers) can be another source of help for you. They provide an opportunity to get together with other helpers and caregivers, who may already have experienced the problems you are facing. Through their combined experience, these groups can be an invaluable source of help, comfort and encouragement.
Your doctor, community nurse or social worker may also be able to help. They will be able to give you advice about looking after the person and the support available. If they can’t help you resolve your problems, they will usually be able to put you in touch with someone who can.
“Ease any embarrassment by taking the courage to explain the situation to people around you.”
You may feel embarrassed when the person displays inappropriate behaviour in public or disrupts the neighbours. It may take some courage, but by explaining the disease and the concept of dementia to friends and neighbours, you will help them understand the person’s behaviour.
Look for support from other caregivers who have experience of similar problems. Sharing your feelings with other caregivers will enable you to cope better and the embarrassment may fade.