Most people don’t realize that every time Alzheimer’s Disease strikes in a family, it hits at least two people. The first one is the person who is the victim of the slow degenerative brain death, which changes who they are and how they live. The other is the one who steps up and assumes the role of primary caregiver.
It is a tendency in this process that the new position will ultimately absorb the caregiver. Being immersed in the 24-hour care situation, they lack the perspective to understand that it could be dragging them down. They tend to believe that asking for help is a sign of weakness: it could mean that they “don’t care,” “don’t love enough,” and are failing in their responsibility of honoring the person they love.
Nothing could be farther from the truth, though. Asking for help is, in reality, a sign of strength. It shows that the caregiver recognizes his/her limits and will do what it takes to provide the best care possible.
Not asking for help when one must, could be a recipe for disaster. As the exhaustive work of caring for someone with the disease progresses, caregivers feel that their energy is drained. Many report a feeling of “losing them.”
That happens, in part, because they go through a long mourning process that is sometimes called “the long goodbye.” They mourn the person that was lost to the disease, the one their loved one used to be. And they mourn the actual person they are caring for, who they see dying in front of their eyes, day after day. I once heard someone refer to it as boarding two trains going in opposite directions, at the same time.
Caregiving for one with Alzheimer’s can make the caregiver very ill, stressed and irritable, leading to burnout. That’s called Caregiver Stress. According to studies by the University of California, around one-third of those taking care of a family member who has Alzheimer's suffers from depression. Many more caregivers suffer from other illnesses, and some might end up in the hospital.
Recently I was re-watching the PBS documentary The Caregiver Perspective, and I could observe how this process happens with every caregiver. In the documentary, one of the caregivers describes how she denied the need for help until she ended up in the hospital and, then, could not care for her mother anymore. Another pushed it so far as possible, until she found herself on the couch, making numerous phone calls, begging for help, while her loved one watched, sitting on the side.
However, in the same documentary, those who could and asked for help were able to provide a better quality of care, kept their loved ones engaged in activities and looked after themselves while still being significantly involved in the care process.
As I always say to the family caregivers of our patients: If you don’t look after yourself first, You can’t take care of your loved one.
There are many ways of getting help, and it all depends on the needs of the caregiver. The Alzheimer’s Association provides a plethora of information for those going through this process. They organize and sponsor support groups for caregivers, mediated by trained professionals. Being in touch with others who deal with the disease is good to exchange experiences and build mutual support. The caregivers feel that they are not alone in what they are going through.
Then, there is proper hands-on help. At Home Helpers, we are specialized in assisting those in need and their families. We offer tailored care plans, designed to fulfill different needs of Alzheimer’s patients and their families. I am certified in Alzheimer’s Training by the Avila Institute of Gerontology, and I make sure that our caregivers are trained, experienced and qualified to deal with Alzheimer’s patients.
We also count with social workers and other Alzheimer’s trained professionals in our team. Our Community Care Coordinator Nicole Matson, for example, moderates one of the Alzheimer’s Association’s support group for Alzheimer’s caregivers at the Suffield Community Aid, on the last Tuesday of every month.
How caregivers can help
Here are some ways our caregivers can assist:
- Help with communicating with loved ones to get them to cooperate with accomplishing daily living activities like feeding, bathing, and toileting;
- Companionship, to help them to engage in daily activities for the body and mind, so they can spend their energy during the day and sleep better at night;
- Housekeeping, reducing the burden on the family caregiver about cleaning and cooking;
- Running errands: grocery shopping, paying bills, taking the patient to medical appointments;
There is not a “one size fits all” answer, and our approach is to discuss with the family what is the type of help they need and what we can do to make their life easier. To do that, we conduct a free in-home assessment, in which we get to talk to the patient and the family caregiver, to help them to prepare a care plan tailored to their needs.
Getting some help, at least for a few hours a week, goes a long way in recharging the caregivers’ energies and helping them to improve the quality of care. Being away from the care situation for a few hours can bring perspective and allows the caregiver to understand what is working and what is not, for example.
So, before you feel stressed, ill, emotionally drained, anxious, confused or depressed, now it is the time to be strong and ask for help. We can help.
Available in Suffield CT, Tolland CT, Vernon CT, Manchester CT, Somers CT, Ellington CT, Longmeadow MA, East Longmeadow MA and all North Central CT and Western MA.