Dementia and other afflictions of the dependent affect, of course, themselves, but also the entire family. The greatest burden is placed on the caregiver. The personal and emotional stress of caring for a person is enormous, and you need to plan ways of coping with the disease for the future. Understanding your emotions will help you successfully cope with the person's problems as well as your own. You are an important person in the life of this person. Without you, the person would be lost. This is why it is essential to take care of yourself, to gain strength from within, and to control the stress. If you do not control the stress, the stress will control you.
Affirmative Sense of Oneself
Learn to listen to yourself -- to your body, your mind and your intuition. Engage in positive self-talk. Be comfortable, and like yourself. If you need to change some things about yourself, change them, and feel good about yourself. Refrain from being negative about what you can't do; focus on the positive. Set your personal and work priorities, and do what is necessary.
Feelings of guilt are a natural response to the situation. Because of this affliction, you may feel that you have lost a companion, friend or parent, and grieve for the way they used to be. Many caregivers find themselves shifting between hope and despair, thinking the person may get better, then knowing they will not. Also, with a progressive disease, just when you think you have adjusted, the person may change again. It may be devastating when the person no longer recognizes you.
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 encouragement and assistance to keep going.
It is common to feel guilty. It is common to feel guilty for being embarrassed at the person's behavior, for anger at the person, or for feeling that you cannot carry on and are thinking about nursing home placement.
The decision to move someone you care about or love into a nursing home is a difficult and painful decision to make. Yet caring for someone can become a 24-hour occupation. 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 they can get the 24-hour help they need.
You may find it helpful to talk to other caregivers and friends about the feelings of guilt. Just because the person you care for goes to a nursing home, it does not mean giving up your caregiver responsibilities. Indeed the care home may be grateful for your help at mealtimes or with bathing. Continuing to help in this way will help relieve your feelings of guilt.
Getting angry is normal. It is important to remember that you are not perfect. It is 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 upon the circumstances. It is important to distinguish between your anger at the person's behavior that is a result of the disease, and your anger with the person. This will help you to cope better.
Try to understand the person's behavior that is upsetting you, and see if you can stop or reduce it. It will not help either of you to lose your temper. If you think you are going to lose your temper, leave the room, and give vent to your feelings away from the person.
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 like this, you must seek professional help. Many local support groups have caregivers' contacts, with whom you can talk to get advice. Use these people to get help when you need it.
Ease any embarrassment by taking the courage to explain the situation to people around you. You may feel embarrassed when the person displays inappropriate behavior in public or disrupts the neighbors. It may take some courage, but by explaining the disease to friends and neighbors, you will help them understand the person's behavior.
Look for support from other caregivers who have experienced similar problems. Sharing your feelings with other caregivers will enable you to cope better, and the embarrassment may fade.
As best you can, maintain friendships and keep social contacts. Loneliness makes caregiving harder. Many caregivers withdraw from society and, along with the person they're caregiving, are confined to and around their homes. Being a caregiver can be lonely. You may have lost the companionship of the person, as well as social contacts, due to the demands of being a caregiver.
As you try to keep in contact with friends, see if they can offer extra help. Explain the problems and that they, as friends, can help you by providing to you --or to the person you're caring for-- some companionship.
Maintain your own social engagements, giving yourself 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 life, where you do not have to be separated from the person you are caring for.
The family can be the greatest source of help. For some caregivers, the immediate family is the greatest source of help. For others, it is the biggest source of distress. If this is the case, you may feel that you have been left to cope as a caregiver on your own, 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 are not helping. Maybe you need to ask family members for help, as they may think you're handling the caregiver responsibilities just fine on your own. Maybe you need to ask for specific help at a specific time, and be direct about the request. It may be helpful to call a family meeting to discuss the care of the person.
If you cannot get help from your immediate family, then 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 care you need. You may find that by looking after yourself, you feel less stressed about the lack of family support.
You need to share your feelings about your caregiving experiences with others. If you keep them to yourself, it may be more difficult for you to look after the person, as you may begin to resent them or get angry with them. 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 can realize 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 person's doctor or the local support group.
Taking Time Out for Yourself
It is essential to make time for yourself -- for your own quiet time, relaxing time, fun time and exercise. As a caregiver, you risk isolation. This can cause loneliness and sometimes anger or resentment towards the person you're caregiving. Taking time out allows you to spend time with others. Enjoy your favorite hobbies and, most importantly, enjoy yourself.
Support groups, social services and some nursing homes provide day care help and respite care services, where you can leave the person in safety and comfort while you enjoy time to yourself or with the rest of your family. If you can afford help in the house, use it. Use the support available to you, so that you can have a rest.
Know Your Limits
Be aware of how much you can take, and seek help if caring becomes too much for you. Before responsibilities start piling up and you feel pressured too much, learn to say no to job, family and friends. How much can you take before it becomes too much? Looking after someone is a demanding role, which may be complicated by:
- Your own physical or health problems
- Lack of sleep
- Financial uncertainty
Most people will come to realize 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.
Do Not Blame Yourself
This condition is no one's fault; the disease is the cause. Do not blame yourself or the person you're caregiving for the problems you encounter. This is particularly hard if the person cannot remember who you are or if they are 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 you're caregiving.
Seeking and Taking Advice
Learning to seek and take advice can make you a better caregiver. Learning to accept help may be new to you. More often than not, family, friends and neighbors may want to do something to help you and the person you're caregiving.
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 also may be able to help you. They will be able to provide you with help and advice about looking after the person and the support available. If they cannot answer your questions themselves, they usually will be able to put you in contact with someone who can.