The majority of people caring for an Alzheimer affected parent are Baby Boomers. When thrust into the roll of care giver there are things that you can do to better cope with responsibilities.
Expectations: Coping and Solutions:
Personal Expectations and Acknowledging Successes
Learn to acknowledge your successes, even if is only a silently celebrated sense of accomplishment. It is imperative to remember that you are, indeed, human and when faced with caring for a family member with Alzheimer’s disease, it is a process through which you will have both successes and failures. You will make mistakes. Your mistakes will rarely, if ever, be of any significant proportion. You will have successes. Just as important as it is to learn from our mistakes, it is important to learn from the successes. Do not be afraid to be human throughout the process.
Know your limitations. Knowing your weaknesses and limits is a tremendous strength. But knowing your limitations if you are unwilling to ask for help is an exercise in futility. If you know your limitations but constantly disavow their impact on caregiving or your won well-being as a caregiver, you are likely to compromise both your own well-being and that of the person with Alzheimer’s disease. Challenge yourself to tackle things you think you cannot do, but learn to know when you are pushing too far and you and your caregiving will suffer as a result.
At the same time, know your strengths. If you are prone to expecting failure before you begin, you will experience failure. It is just as important to acknowledge your strengths as it is your weaknesses, and to capitalize on your strengths and compensate for your weaknesses.
One of the toughest challenges you will face is assessing your situation realistically and adjusting your expectations accordingly. The expectation that you will be able to care for the person with Alzheimer’s disease by yourself throughout the course of his or her illness may or may not be realistic for you. It is unrealistic for most people. This does not mean that nursing facilities are the only options. You do have options, but you must be willing to avail yourself of them. If you doggedly adhere to your elevated expectations despite evidence that they are unrealistic and not working, you are damaging both yourself and your loved one who has Alzheimer’s.
Try to understand where your unrealistic expectations spring from. Perhaps you know someone who was able to independently care for a person with Alzheimer’s disease and you believe you should be able to do the same. This is a mistake. No two individuals are the same, nor are their situations. And you did not live in the house with that person – there may well have been problems with caregiving that you are not aware of and the person is not telling you about.
You may expect that it is your duty as a spouse or responsible family member to shoulder the responsibility on your own. Again, this is a mistake. Part of being a responsible and loving family member is to do what is best for everyone involved, and that includes both you and the person with Alzheimer’s. Often, caring for this person on your own will not be the best for either of you. Caregiver burnout is common and it will affect your well-being, as well as that of your loved one. It is much easier to avoid burnout when you have assessed your situation realistically, thrown the phrases “I should be…..” or “I should do…….” out the window, and set a realistic standard for yourself and the people around you.
If you find yourself caught up in a cycle wherein you feel as if you have nothing but failures, you need to find ways to break out of that cycle. Talk to friends and family members who may be able to help you engage in a reality check, including helping you to see your successes and adjust your expectations. People who have dealt with Alzheimer’s in their own family may be particularly helpful. Support groups may also be an invaluable resource at these times – either online support groups or one available in your community. People who have filled shoes similar to yours have often felt the same emotions and can be adept at helping you to achieve a greater balance in how you view your situation.
If you have faced reality and really are in a situation where failures are destined based on the circumstances, reevaluate the whole environment and the circumstances that are continually causing problems. Take a realistic look at things that you can change and what needs to be done to affect changes. This may require making difficult decisions and enlisting the help of others to help you make changes, but it may be necessary. If you are, indeed, evaluating accumulating problems realistically, the aggregation of difficulties may be an indication that significant changes are in order.
Expectations of the Person with Alzheimer’s Disease
Educate yourself about Alzheimer’s disease. Read the chapters in this book that provide information about Alzheimer’s behaviors, problems that often arise during the course of the disease, and what happens to the brain afflicted with Alzheimer’s disease. Read, also, about solutions to frequently encountered problems.
Encourage the individual with Alzheimer’s to independently undertake tasks they are able to, help with those that require assistance, and learn to recognize when you must step in and do things for the person with Alzheimer’s. This may take time and some trial and error and it will change over time. If, however, your expectations do not change, you will find the individual increasingly unable to meet those demands. Make flexibility your rule.
No one wants to appear incompetent and, particularly early in the course of the disease, people cover up their deficits. While it preserves dignity, it also leads people to expect more of the person with Alzheimer’s than he or she may be able to handle. Abilities also fluctuate, sometimes from minute to minute. This may be due to a number of factors, including brain damage that is only partial and allows sporadic transmission of information. In addition, skills in various areas of functioning will be impaired or preserved to different degrees – an ability to tackle one task successfully does not mean that a task that requires slightly different skills can be accomplished. You will need to learn through some trial and error, through careful observation, and via learning about Alzheimer’s disease in general what your affected family member can safely accomplish independently and when you will need to step in and help.
Overwhelmingly the behavior problems that arise during the course of Alzheimer’s disease are due to the effects of the disease and the brain damage it causes. This is not to say, though, that a person’s characteristics are erased when they have Alzheimer’s. For example, stubbornness in an individual who is characteristically stubborn may persist. Early in the course of the disease, some behavior problems may be due to her preexisting stubbornness, to psychological factors, or may be compounded by new disease variables. Even early in the course of the disease, she will be far less able to guide and choose her behaviors than she was prior to the onset of Alzheimer’s, so you must always take the disease variable into account even very early in the disease. You will need to learn how to tell the difference between willfulness and behaviors that are more rooted in the disease. Although it is next to impossible to be right all of the time when forced to make these distinctions, it will help both you and the person with Alzheimer’s if you are as sensitive as possible to the differences between disease-based problems and the individual’s own characteristics.
In the early stages of the disease, the problems that arise may be due to more of a mixture of the person’s preexisting personality and the disease process. As the disease progresses, it is increasingly the disease that is causing problems, and during the middle and later stages, it is essentially entirely Alzheimer’s that causes the behaviors and psychopathologies that are so problematic.
Keep treating the person with Alzheimer’s in a respectful and loving way. This may seem axiomatic, but it is all too easy to talk down to a person with Alzheimer’s disease. Being treated with respect and dignity is as important to someone with Alzheimer’s as it is to anyone else, perhaps more as the disease begins to rob them of abilities. Too often people with Alzheimer’s are treated in infantile ways and it is demoralizing. Your expectations must constantly be adjusted and at times the person’s behavior will be reduced to childlike levels, particularly as the disease progresses. You will need to find a balance between empowering the person with Alzheimer’s, treating him or her with respect and dignity, and still guiding and caring for that person in ways that are similar to how you might care for a young child. Throughout, think about how you would like to be treated were you in the same position: the golden rule is a good rule of thumb.
Expectations of Others
You may believe that your friends and family will be involved in your loved one’s care and in many cases they will be. Here, too, you will fare best if you throw your “should” thoughts out the window – people often do not behave as we think they “should,” and expecting people to participate in care in ways we think they “should” often leads to disappointment and anger.
As early as can be managed in your loved one’s illness, it is important to put plans in place that detail what role others will play in your loved one’s care. If possible, hold a family meeting to outline how each family member will contribute, the limitations to the contributions individual family members can or will make, and how to capitalize on individual strengths most effectively. Be flexible as needs may change over time. It is imperative that you tell people specific things they can do to help you when help is offered. The offer may not be repeated as time goes on.
If you are the adult child of a person with Alzheimer’s, your roles will also shift. You may be asked to undertake personal and practical care tasks that are uncomfortable, and you will often find yourself in a parental role as the person’s ability to do things independently diminishes. This all occurs in the context of adult children leading their own complicated and busy lives, sometimes leaving these offspring feeling overwhelmed.
Plan ahead for the time you will need to take care of the jobs that have been shifted from your spouse’s or parent’s shoulders to yours, and for the tasks that you generally undertake yourself but which are now coupled with caregiving. Take time early in the course of the disease to investigate services available to the person with Alzheimer’s and the family. Talking to other families that have experienced Alzheimer’s in the family, or finding information through libraries and the Internet, may help you to anticipate problems you had not considered. The more you know about available services and financial assistance, the less you will be thrown for a loop by the unanticipated.
The hardest task may be to redefine how you view family members. Families tend to work as systems, and the roles that many families use to conceptualize each person’s place in the family help to organize the system in peoples’ minds. Note that these roles are often tacit; many of you may be saying to yourself, “Our family doesn’t do that. We view each person as an individual.” That may or may not be true of your family. Take the time to look as objectively as possible at your family to analyze if people have been pigeonholed in certain roles.
The family will operate most effectively if each person is allowed to contribute based on his or her strengths, and is allowed to contribute in ways that you may not expect. Try to see your family members as you may never have seen them before – see the possibilities and the strengths in the person, regardless of how you may have thought about that individual in the past. Not all family members will be able to contribute significant help during this process, but do not make the mistake of counting people out prematurely.
Being flexible throughout the process will help you deal more effectively with the variety of issues that will arise. Changes that occur throughout the course of the disease will require continual decision-making and changes in family structure. Offspring will have to make decisions for a parent, thus altering the traditional parent-offspring roles. Some siblings may be called on or may assume more active roles in caregiving and decision-making than others.
If your family is excessively rigid when it comes to shifting roles and responsibilities, it may help to seek brief professional assistance at various points along the way. Even one family meeting with a mental health professional or a combination of involved professionals may help to sort through and solve temporary practical and emotional roadblocks.
Deborah Uetz received her degree in Education from Southern Illinois University and was an educator before leaving to pursue her interest in writing. Ms.Uetz has dedicated herself to further educating families of Alzheimer’s patients through radio interviews and public speaking seminars. Deborah Uetz makes her home in Illinois along with her husband Edward.–