You’re 76 and are having memory problems beyond the occasional slip. Last month, you drove in circles for an hour because you forgot how to get home from the same grocery store where you’ve shopped for three decades. You’re finding the sequences of ordinary tasks difficult to understand. Finally, you give in to your husband’s nagging. You see a neurologist. The diagnosis is Alzheimer’s disease (AD).
You’re 57 and still rising in your career. At least you were rising up until the last six months when you were told that you are upsetting clients because you’ve become short tempered. You’re brushing off appointments because you don’t feel like going, yet you don’t bother to cancel. You are having problems keeping up with new technical changes. Finally, your long-time boss tells you that he thinks you need to see a doctor. Your personality is changing and your abilities are slipping. You see a neurologist. The diagnosis is younger onset Alzheimer’s disease (YOAD).
We know the numbers. More than 5 million Americans have Alzheimer’s disease. More than 44 million people across the globe have Alzheimer’s disease. The financial cost is forcing families into bankruptcy and, unless a way to prevent or cure the disease is developed, the cost will break health care systems around the world. Additionally, the emotional cost of caring for someone with Alzheimer’s disease is tearing apart families as well as causing physical and mental health issues for family caregivers.
You know all of this because of TV and newspapers. But Alzheimer’s happens to other people, doesn’t it? That was your attitude until now.
Accepting an Alzheimer’s diagnosis
There is no cure for Alzheimer’s disease. It’s a progressive disease that will not only steal your ability to make new memories but it will steal your ability to remember your own life. Eventually it will steal your ability to recognize your loved ones. Alzheimer’s could change your personality from a genuinely nice person to a frustrated, angry and –possibly– violent person.
Alzheimer’s is also a disease that carries a stigma similar to any illness that affects the brain, whether that is depression, bi-polar disorder, obsessive compulsive disorder or any other type of mental illness. You know the disease isn’t your fault. You know that you are just one of millions who must learn to live with Alzheimer’s. But knowing is not the same as accepting. Accepting takes time, and it may even take getting over your own bias about diseases that affect the brain.
For many, accepting an Alzheimer’s diagnosis is much like accepting a death. In some ways that’s what people have to do. I helped my dad as he lived with dementia for a decade before his death. I grieved his loss every day even though he was physically living. Accepting this kind of grief was worse than accepting the passing of his physical being when that day came. For a person who is given a dementia diagnosis, the experience will be much the same except they are grieving for the impending loss of themselves, often long before death.
The conventionally accepted stages of grief are applicable for many who receive an Alzheimer’s diagnosis. These generally accepted stages are denial, anger, bargaining and depression before people eventually reach acceptance. The stages can vary in order and not everyone goes through them all. Few people, however, would receive a health diagnosis as frightening as Alzheimer’s disease without having to grieve deeply what has been lost, as well as all that will be lost in the future as the disease progresses. Therefore, acknowledging the stages of grief as you go through them can be helpful.
Denial: There must be a mistake. You’ve rarely been sick. You’ve kept your weight at a reasonable level. You’ve remained active and busy. You consume a decent, if not perfect, diet. Some people, at this point, will seek a second opinion. Mistakes are made, including diagnosing people with dementia when they are actually experiencing side effects from drug or exhibiting the effects of an undiscovered infection. So, you seek a second opinion. Sadly, the diagnosis is confirmed. You really do have Alzheimer’s disease.
Denial is a common and, at times, useful defense mechanism for we humans to cope with difficult situations. It works as a place holder while we scramble to take in new information. Denial becomes a negative when we can’t move past this phase. Most of the time, reality forces us to move forward. That momentum brings us to the next stage, which frequently is anger.
Anger: Why you? You’ve done everything by the book and now your plans for the future are shot. Your plans to travel with your wife, rise to the next level at work, take your grandchildren to Disneyland. All unlikely, unless you can cram everything into the next six months. Of course you are angry. That, too, is normal.
Bargaining: Some people try to bargain with God or the universe in general. They think to themselves, “I’ll give more to charity, I’ll volunteer more, I’ll be a better person, if only this diagnosis is wrong or I’m cured.” Like denial, bargaining is a place holder. It gives people time to come to grips with reality. Most people know that we can’t bargain themselves out of this tough situation, but they are desperate. Bargaining steps in to provide a cloak that temporarily softens reality.
Depression: Bargaining can only last so long before depression moves in. Depression, too, is a normal reaction when people realize that there is no way to escape the diagnosis. You are faced with a devastating health diagnosis that will affect you profoundly as it progresses. The disease will change not only your future, but that of your whole family, and even that of your friends to some degree. You will gradually become almost unrecognizable to those who don’t know you well. You will become completely dependent on family members and paid caregivers. You will eventually be unable to feed yourself. You’ll become incontinent. You’ll be confused, frustrated and often frightened and only those who love you or are trained to care for people with the disease can help guide you through it. Again you are reminded that there is no way out.
Acceptance: The stages aren’t necessarily orderly. They will come and go – and come and go again, often in different configurations. But eventually a day will come when you know that there’s nothing left to do but accept the diagnosis.
Acceptance doesn’t mean you like what is happening. Acceptance simply means that you know that you have Alzheimer’s disease and you will work with that knowledge. After coming to some acceptance, fragile as it might be, you’ll need to consider how to tell family members and friends who have yet to figure it out. If you’re employed, you’ll have to decide when it’s appropriate or necessary to tell your employer. You’ll need to plan your life, for you still do have a life to live. Those will be your next steps. First, however, must come acceptance.
Most people find that once they reach acceptance, they can start making plans. They can start living again. Yes, they will be living with a different attitude, often an attitude that makes them grateful for every “good” day that they have. They take in more sights, sounds and fragrances. They appreciate their families more. Reaching acceptance that yes, you have Alzheimer’s, will help you move forward, even though you’ll be moving forward as a changed person.
You and your family can research and learn about how to plan everything from finances and care plans to accomplishing your new, revised goals.
Receiving an Alzheimer’s diagnosis doesn’t make you worse than you were before the diagnosis. What it does is give you time to go through whatever steps of grieving that you need to go through as often as you need to go through them. It gives you time to decide how to move toward the future. In that way it gives you back some control over your life.
Receiving the diagnosis is not the end of living. It’s the beginning of learning to live with a tremendous challenge. However, there will still be joy in life if you take each day as it comes and look for that joy. You and your family can seek support through your community and through online resources. The Alzheimer’s Association and the Alzheimer’s Foundation of America are there for you. Reach out for help. You truly don’t have to go through this alone.
Carol Bradley Bursack is the author of Minding Our Elders.