To be a caregiver is something one has to experience first hand to fully appreciate or understand. To be a dementia caregiver lacks words to adequately describe. To provide “care” for another is to give part of yourself away. We do this willingly, lovingly and without hesitation in most situations.
Dementia represents a physical illness…injury to the brain…the very organ that controls thought, reasoning, personality and life functions. We learn early on to “expect the unexpected” and “prepare for a journey that is constantly changing”. In most cases, individuals suffering from dementias such as Alzhiemer’s disease, Vascular dementia, Lewey Body and other forms often require 24/7 care in order to have thier basic needs met.
What about the care givers? Caregivers have significant needs that are as equally important as those they care for, yet often go unmet due to the heavy burdens they carry. Dementia caregivers are in critical need of C.A.R.E.
Compassion, Acceptance, Resources and Education.
Compassion can be hard to find in a world that has not yet become “dementia aware” or “dementia friendly”. That is why programs such as the Purple Angel Campaign (purpleangel-global.com) are crucial for both caregivers and those living with dementia. Imagine the difference it would make to be able to go out and shop at a store that understands your loved one or go to a church where an adult day care existed with staff trained to work with dementia, or enjoy a cup of coffee and an activity with your loved one and fifteen other caregivers and thier loved one’s at a memory cafe’ where you gather once a week to laugh and sing, or share stories and tears. Though few and far between, there are more and more options such as these for caregiver comfort and I hope to see more growth as dementia awareness campaigns continues. Join a support group, search for an area memory cafe’ and try to avoid becoming socially isolated. Seek the comfort and compassion of those around you frequently as you will need it often.
Acceptance that your loved one has a physical condition where their brain is injured, and they can no longer assimilate information or remember the way they use to can be very difficult to achieve, especially when they still look and to some degree act as they did before. We grieve for the losses that occur; loved ones slowly slip away cognitively and phyically while the lifestyle we once new is forever changed by the word “caregiver”.
Grief has several stages and often begins with denial. You may find you doubt the diagnosis, experience feelings of anger, or even question why my loved one? Other emotions may settle in such as depression before you can accept there is something physically wrong inside their brain. One of the complications of acceptance for dementia is that the “symptoms” of the disease often manifest as “behaviors” rather than external physical changes. We must remember not to take these changes personally. If you find you are struggling with achieving acceptance of your caregiver status or your loved one’s disease, consider seeking counseling to help you progress to acceptance.
Resources can become the elusive butterfly in dementia care. Learning what services are available is essential BEFORE you need them so you are well prepared if and when the time comes that you can no longer provide all the care needed by yourself. If finances will be an issue, apply for financial aide as soon as possible. Visit your local Council on Aging as well to see what else might be available from a resource standpoint. Caregivers need to use all resources available to them to prevent burnout.
Education regarding your loved one’s disease is essential in understanding the journey ahead of you as well as ensuring the best opportunity for success in your day-to-day interactions. Not all dementias are identical in the course of care or even the eventual outcome of the disease. For example, Alzheiemer’s disease is a terminal disease that is the 6th leading cause of death and will have progressive symptoms while vascular dementia is not always progressive and often plateaus once the cause of decreased blood supply to the brain is resolved. Caregivers need to know what type of dementia their loved one has whenever possible and then learn all they can about the diagnosis in order to provide the best care possible.
If you are a dementia caregiver, I encourage you to work on your peronal C.A.R.E and wish you the best on your continued journey. Blessings to you and your loved ones.