Mary Guerriero Austrom 
Brock alumna and expert in the field of aging and Alzheimer’s disease, Mary Guerriero Austrom (BEd ’80, BA ’81), returned on March 3 to the University as a guest speaker. The 2009 Distinguished Alumni Award winner spoke on “Caring for the caregiver: Alzheimer disease and its impact on the family” at the Faculty of Social Sciences Alumni Lecture.
In the article below, Austrom outlines helpful coping strategies when caring for a loved one with dementia or any chronic disorder.
Achieving a balance
Can you take care of yourself and them too?
By Mary Guerriero Austrom, PhD
Caring for a loved one with Alzheimer’s disease or dementing disorder is stressful at the best of times. When the caregiver is an adult child of the person with dementia and has a family of his/her own, a job, and so on, the caregiving role can become very demanding and burdensome. Can you effectively care for your family member and still take care of yourself and all of your other responsibilities? The answer is yes you can, perhaps, though, not all at the same time. With appropriate planning, most family members can provide excellent care to an adult-care recipient. The following coping strategies have been found to be very helpful when caring for someone with dementia or any chronic disorder.
Be realistic. Consider if you can realistically do everything you are planning, thinking, or willing to do. Think through the ramifications of your decisions before acting. If you are thinking about moving a frail or cognitively impaired parent or family member in with you, first answer the following questions:
- Does that family member want to move in with you?
- Do you have enough space in your home for another person?
- Have you discussed this with your spouse and any children who might still be living at home?
- Do you have enough time to provide the necessary care and supervision to keep the person safe?
- Can your budget handle the additional costs of providing care
- Have you considered other options or services available in your community that can help provide care and supervision? This might allow the person to remain in his/her own home longer.
Once you have thought through a particular issue, adjust your expectations accordingly. If you decide to move your parent in with your family, do not expect that things will go smoothly from the very beginning. Give everyone time to adjust to the changes in living arrangements.
If you are feeling overwhelmed, ask yourself:
- In the bigger scheme of things, how important is this?
- Does this activity (for example, a bath) have to happen now, or can it wait a few hours or a day?
If the issue is bathing or changing clothes, and the older person is resistant, it is usually not life threatening, so let it go. Remember it is easier to change the subject, walk away, take a deep breath, and count to 10, than it is to reason or rationalize with a person who has dementia.
Be good to yourself; reward yourself. Remember that you cannot take care of anyone else if you do not first take care of yourself. Take time for your own needs and interests and try not to feel guilty about it. When caregivers do so, many report feeling better and are actually able to provide care longer. Do not give up everything important to you in order to provide care. Eventually the caregiving role will end or change. Therefore, keeping yourself connected to others is vital for your own long-term well-being. Do not ignore your own physical health. Take time to go to your own doctor, take your medications as prescribed, eat right, exercise (a daily walk is enough) and get enough sleep.
Plan…plan…plan…then plan some more. You can never be overly prepared! The more contingencies you are prepared for, the fewer stressors and surprises you will encounter. For example, find out about services available in your community, visit daycare centers and long-term care facilities, and talk to an elder law attorney before you really need to. You can make better decisions and remain more objective if you are not in a crisis situation. A wise caregiver once said: “Be prepared for the worst but pray for the best.” Once your plans are in place, take one day at a time.
Communicate with everyone. Try to include all family members in planning meetings and discussions. You can avoid or avert potential family conflicts if everyone is kept informed. Remember that everyone has his or her own history, perspective and expectations. Have everyone share their perspective, but try not to point fingers or lay blame. Try to encourage working together to provide the best care for your family member with dementia.
Maximize the older person’s independence (and everyone else’s too). Do not try to do everything for your loved ones with dementia; allow them to maintain as much independence for as long as possible. Too often caregivers increase dependence by trying to do too much for the care recipients. Do not worry about their clothes matching or appearance of their makeup if it creates an argument or frustration. Maximize the fact that they can still participate in their own care such as dressing, feeding or toileting. Do not focus on what they can’t do… it is what it is and move on.
Ask other family members to help out with chores and caregiving responsibilities. You may need to adjust your own expectations and standards of housekeeping. Try not to criticize the efforts of others or feel that you could have done a better job yourself. Remember, if it not life threatening or morally threatening, let it go.
Keep your sense of humor. Look for the joy in life and try to laugh a little every day. There is always a bright side to things, even when everything appears to be quite glum. Try to focus on at least one positive, joyful thing every day. It can be as simple as appreciating the sunshine, a child’s giggles, or birds singing. A positive attitude has been shown to have beneficial effects on one’s coping ability and overall quality of life.
Positive self-talk. Focus on all the things you do well, and forgive yourself and others for mistakes. Learn from mistakes and move on. Apologize to your care recipient if you lose your patience or temper. Try telling yourself…I am a good person…I am a good daughter or son…I am doing the best I can. Everyone makes mistakes now and then. I’m sorry and I will do better tomorrow.
Ask for help when you need it. Do not be a martyr. Asking for help is not a sign of weakness but a sign of strength. Try to be very specific about what kind of help you need, and you will be more likely to receive it. For example, if someone offers to lend a hand, ask that person to pick up the dry cleaning, the groceries, or to spend a couple of hours with your care recipient while you are busy. A great idea came from one family caregiver, who kept a jar full of chore cards. If someone offered to help, the caregiver simply had that person pick a card with a chore written on it.
Join a support group. Many caregivers report that they get the best caregiving help from support group members who have had similar experiences. Some caregivers report that it is nice to know that they are not alone. If you are interested in finding a support group in your area, call the Alzheimer’s Society of Niagara Region at 905-687-3914.
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