Banner by Deirdre Nuebel

Do You Know Who I Am? 

by Ripal Sheth

“Do you know who I am?” This is one of the hardest questions caregivers may ask to their loved ones suffering from the disease with no survivors. There are an estimated 5.7 million people living with Alzheimer’s disease, a progressive illness leading to mental and cognitive decline. It mainly affects people over the age of 60, although early-onset dementia can have an impact on those who are younger. Meanwhile, caregivers for dementia range from trained nurses and professionals to children taking care of their parents. The stress of watching Alzheimer’s progress can be especially debilitating for those who are taking care of their loved ones.

According to the Alzheimer’s Association, Alzheimer’s disease progresses through three major stages: mild, moderate and severe. During the mild stage, patients start experiencing seemingly minor issues throughout everyday life. They may forget processes and words and often struggle with planning and organizing. As the disease enters the moderate stage, patients have behavior changes and sleep issues. They start losing parts of their identity and forget things as integral as their address and their personal history. Some of the most jarring changes, such as becoming unable to recognize their children are or losing their perception of home, can take place in this moderate stage of the disease. Alzheimer’s then progresses to the severe stage. Patients struggle to respond to their environment and have severe difficulty communicating with others. At this point, they often require extensive care and major investments of time and energy from caregivers.

While there is an immense amount of support available for patients suffering from dementia, support for caregivers is more difficult to find. Nurses and trained professionals invest their time and effort in order to care for people who slowly lose their sense of identity over time. However, many caregivers for dementia patients are spouses, children and other close family members. They often do not talk about their experiences or the trials of their role. This leads to caregivers waiting too long before seeking out help.

One common hardship that Alzheimer’s caregivers experience is that everyday life does not stop for the disease. “Diary of an Alzheimer’s Caregiver” is a website that gives caregivers a platform to take about the unique challenges they face. One woman caring for her mother who has Alzheimer’s explains that she must deal with her own personal health issues and other non-health related obstacles in the midst of the demands of her role as caregiver. Her story demonstrates that although untrained and unpaid caregivers may want to invest their entire energy into taking care of their loved one, the challenges they face in real life do not stop. It is always important to keep this in mind when providing support to a family that is dealing with the impact of Alzheimer’s disease.

Caregivers may also suffer from feelings of hopelessness in the face of the disease. Alzheimer’s is still a disease with no survivors; receiving a diagnosis signals an almost certain fate for the patient. Especially as the disease gets more severe, caregivers feel as though they have no power to stop its progress. This hopelessness often transforms into guilt when caregivers get frustrated with their patients. In 2012, Johns Hopkins Medicine published a video titled “Caregiver Guilt – Memory and Alzheimer’s Disease.” The video discussed common psychological thought processes that occur when caregivers find themselves in a situation where their hopelessness in helping their loved one turns into frustration. These feelings often stem from the guilt of being unintentionally harsh or angry towards the patient who engaged in actions as a result of their Alzheimer’s disease. The illness can often cause anxiety, aggression and wandering. With caregivers often shouldering a tremendous amount of responsibility, these symptoms of Alzheimer’s can often trigger frustration. A tip given to caregivers in the Johns Hopkins video was to realize that they are doing their best to help, and that one outburst should not result in guilt.

One question remains: what can we do to help support both caregivers and patients in these precarious positions? It makes sense that the happier and more stress-free the caregiver feels, the better the condition of the patient will be. One of the best things that an outsider can do is to be understanding of the position that caregivers are in and be willing to listen to their stories, frustrations and emotions. Helping caregivers cope with grief, depression, stress and guilt lifts significant burdens off of their shoulders. This can be done by not only being open to help them, but also by pointing them towards the right resources, and encouraging them to understand that getting help is totally normal. Caregivers have a tendency to internalize their feelings, because they feel as though these feelings are not valid or worth understanding in light of the situation of the patients. Helping caregivers understand that their feelings are worth understanding and coping with will therefore be highly productive both for their own wellbeing and that of their patients.

Alzheimer’s is a disease with no cure, treatment or survivors. Caregivers, especially family caregivers, are often placed in a very delicate situation in trying to take care of the patient. They often experience immense amounts of stress as they realize life does not stop for them to take care of their patient. Hopelessness can turn into frustration which evolves into guilt. However, we know that supporting the mental, physical and emotional needs of the caregivers often means that the patients end up in better health than if their caregivers were stressed, frustrated and depressed. Websites like the Alzheimer’s Association and other caregiver support groups can be great resources to help support the needs of caregivers. If you know a caregiver, be willing to point them in the direction of these resources and be willing to support them by being understanding of their situation.