Most of us prefer to delay bad news. But, when it comes to Alzheimer’s Disease, (AD) the earlier the diagnosis, the better – for the patient and the prospective caregiver.
An early diagnosis of Mild Cognitive Impairment/ First stage Alzheimer’s gives the patient some control. He or she can modify lifestyle — more exercise, less alcohol, elimination of sleeping pills, among other things — which may slow down the progress of the disease. Early stage patients also have the option to enroll in pilot studies or clinical trials which may benefit them, and certainly will help to develop better treatment. If the patient doesn’t already have a living will and a health care proxy, or power of attorney, this is the time to see a lawyer. And perhaps most important, the patient can take an active role in developing the plan the patient and the family must have to meet the demands of the coming, not just months, but years.
For the caregiver an early diagnosis means time to digest the news, to understand and accept the mountain of responsibilities that lie ahead. In every partnership, there is an informal distribution of duties. One pays the bills, another does the shopping; one puts out the garbage, the other looks after the car; one organizes family gatherings, the other makes the travel arrangement; one cooks, the other carves. However all that falls out, as caregiver, you will find yourself doing everything you have always done, plus everything your partner did. If, like me, you lived in a cocoon about family finances, now you need to know everything there is to know: details of insurance, (private and government), sources of income, the names of agents, accountants, bank officials. There is a sharp learning curve to climb before you even begin the real duties of the caregiver.
Let us hope that this diagnosis comes when your loved one is still capable of participating in a discussion about the future. There is no right or wrong way to proceed — just what is right for you and the patient. This is the time to examine yourself, to accept your capabilities, your weaknesses. It is also the time for important decisions. Are you going to want to stay in your home? If so, what would the eventual costs of that be, what resources are available, can you do it? The time will come when you will need extra hands. Is family available or will you need to hire aides? What resources are there in the community to help? Or is this the time to move to some type of assisted living? Or turn to a nursing home? What facilities are available and what questions do you need to ask? Jane Gross’ book, A Bittersweeet Season, Caring For Our Aging Parents – And Ourselves, (Vintage, 2012), is an excellent source of information on this subject.
You should learn everything you can about the disease, its stages, and treatments. Knowledge is more important than hope. Scam artists and fake cures follow in the wake of every ailment – AD among them. We would all like to think that there is an easy cure. There isn’t. That doesn’t mean that there are no treatments available that will make the inevitable progress of the disease more comfortable for the patient and the caregiver — there are. As the gatekeeper to your patient’s care, you need to be able to differentiate between the scientific fact and false hope.
An early diagnosis also permits a thorough examination of the medical assistance available. Is your family physician willing to take on this care through to the end? Does he or she have the patience to care for someone whose cognitive abilities are declining? You can’t fit an AD patient (or any elderly person) into a twenty minute appointment. This may be the moment when you have to seek out a geriatric specialist. Unfortunately, there not many of them . As a result, it is not uncommon for a ninety year old to be put on a waiting list at a geriatric service: surely that is one definition of irony! No matter which doctor you choose to guide you through this disease, as caregiver you are going to be the major coordinator. You can’t count on the various services to remember the details of the patient’s medications and various medical issues. You must be on top of the information, at all times.
In terms of care, you and your partner should discuss frankly the types and levels of care desired. Alzheimer’s rarely requires the kind of radical intervention commonly dealt with in a living will. But you will be dealing not only with AD, but with the process of aging, and possible illnesses and disease. How much treatment should the patient receive? Should there be heart surgery? How many tests for various diseases should be administered? As the AD patient’s intellectual capacity declines, these decisions will become yours alone to make. It is a lonely road.
I highly recommend the book, My Mother, Your Mother, by Dennis McCullough, M.D, (Harper Collins, 2008). Although this book was written for adult children taking on the care of a parent, in its advocacy of slow medicine, it is a useful guide for anyone caring for a patient where there is no possibility of a cure. It is an impassioned call to “preserve the quality of life, even in the face of difficult and accumulating diseases”.
Sometimes I think that the only thing that matches the number of new medical treatments is the growing list of things we don’t want done to us when we are older. I appreciate the fact that doctors want to save lives. But, in some cases the patient should be allowed to go peacefully into that good night. That is a decision you and your partner, and only you, can make, while there is time.