When a Loved One is Diagnosed with Alzheimer’s Disease
by Judith Klein, LCSW
Some of the most dreaded words we may ever hear are that someone we love has been
diagnosed with Alzheimer’s disease. There are currently 29 million Americans and counting that
have heard these words spoken about a family member. This disease has no cure, and becomes a silent thief that steals not only memories but the ability to process cognitively. So, what do you do when you hear this diagnosis? Often Alzheimer’s disease is diagnosed only after a long period of noticing puzzling personality or behavioral changes in your loved one, and after they have undergone many different tests to rule out other diseases and conditions that result in memory loss. Initially there is often shock and denial, followed by feelings of sadness, anger, shame, anxiety and fear. At first, most people are overwhelmed, not knowing what to do and in a helpless and hopeless state of mind.
Sometimes, because of shame or embarrassment or the erroneous belief that there is nothing
to be done, there is a tendency not to seek out information about the disease or to tell anyone about the loved one’s condition. Although inaction is understandable, it is not in the least helpful. It is a truism that knowledge is power. In dealing with Alzheimer’s disease this knowledge can be powerful on many levels, counteracting helplessness and allowing you an active and effective role in coping with the challenges ahead. There is knowledge to be gained about the disease – its various stages, and what kind of behavioral challenges to expect. This will help you to anticipate, understand, and plan for your loved one. There is the knowledge of how to deal with these challenges. This includes learning about health directives, financial planning, and medications available to slow down the progression of the disease. There is also the knowledge of services available, not only to the Alzheimer patient, but also to family members and care givers. Currently, there are support groups, informational meetings, and a 24 hour hotline, all free and available through the Alzheimer’s Association. At the end of this article I will offer a resource list to facilitate this crucial process of gathering knowledge.
Now you are armed with information, but you still have to figure out a way to get through the years ahead. It is a sad journey, as this disease presents you with a long grieving process, losing the person you knew and loved bit by bit. Sometimes it gets very complicated. If you are an adult child of an Alzheimer’s patient you may have grown up in a family in which there was neglect, abuse or abandonment, and yet find yourself the caretaker of your parent. You may be asked to provide much more care than you received at the hands of this parent. This may create a complicated web of feelings of love, hate, obligation, resentment and fear. Sometimes the caretaking disproportionately falls to one family member which creates family discord and reawakens old negative family dynamics. Sometimes if you are also a parent you have to juggle the conflicting needs of your children and your parents, and you may find yourself emotionally torn and exhausted by these demands. If your spouse is the one with the disease, the partner you once knew will not be there in the same way. Roles will constantly be shifting and need to b redefined. You will be increasingly taking on more responsibility, while at the same time losing the support of your former helpmate.
This journey is long and difficult and it is essential that you find the right support system. A trained therapist who is knowledgeable about Alzheimer’s disease can help you navigate these choppy waters. You can be helped to sort out the intensely conflicting and confusing emotions that swirl around you. Although this is a journey of loss, it can also be an opportunity for learning, growth and the reworking of old family patterns. In the words of Olivia Ames Hoblitzelle in her inspiring book about her experience with her husband’s Alzheimer’s disease: “The compelling question is how do we accept the process of aging, diminishment and loss?...If we shift the lens of understanding just a bit we can entertain the possibility that this most poignant phase of life also has its opportunities, surprising moments of grace and hidden blessings.”
www.alz.org – a treasure trove of helpful information
www.mayoclinic – click on Alzheimer’s disease for information
http://alznews.org – combs newspapers and journals for information on research, helpful advice, clinical trials and calendar of free events
1800 2723900 – 24/7 Help Line of the Alzheimer’s Association
6467442900 Helpline and Social Work services of the Alzheimer's Disease and Related
Disorders of NYC, Inc.
The 36 Hour Day: A Family Guide to Caring for Person’s with Alzheimer’s Disease – Nancy L.
Mace and Peter V. Rabins
A Caregiver’s Guide to Alzheimer’s Disease – Patricia R. Callone
The Majesty of Your Loving: A Couple’s Journey Through Alzheimer’s Disease – Olivia Ames
Judith Klein, LCSW