Coping with Alzheimer’s Caregiving
By Donna Brock, Care Manager, Aging Outreach Services
During a recent conversation with a retired Vietnam Veteran and recipient of a Purple Heart, I was enlightened by an analogy of living with and caring for a loved one with Alzheimer’s disease and being at war. I had never considered this idea prior to our conversation, but it seemed very insightful and appropriate.
Although I have never experienced the trauma of war, I have experienced caring for someone with dementia. I don’t assume to know, and I cannot ever fathom what being at war “feels” like. However, on many levels, I can entirely relate to what this kind, soft-spoken gentleman was telling me.
The emotions and challenges are quite similar: isolation, depression, anger, resentment, guilt, lack of control, sadness, fatigue, confusion … and the list goes on and on.
The feelings this caregiver experienced when serving in Vietnam were many of the same feelings he has now in this new role. Now, he is the full-time caregiver for his 70-year-old wife who has Alzheimer’s disease. He tearfully stated he felt like he was on the rollercoaster ride of emotions now much like he was while in Vietnam. The same loyalty and commitment to fighting for his country is now the commitment he feels in caring for his wife. The situation is overwhelming and totally out of control. The patience, strength and courage required are almost more than he can bear.
One would think if you can survive the horror of war, nothing could ever compare and that you could and would be able to endure anything. The isolation, fear and sense of hopelessness many caregivers experience when caring for a loved one with Alzheimer’s disease (or any type of dementia) is all consuming. The constant state of dread and the unpredictable nature of the disease does not allow for much introspection.
Over the course of my career, I have spoken to countless veterans, caregivers and people living with dementia, and I’ve walked in the path of a caregiver myself. This comparison truly captures the sense of helplessness people feel when faced with the inevitable horror of battling this disease daily.
You cannot stop it alone. You cannot make things “right” like they were before. You cannot escape it and say, “I quit,” without suffering the consequences both emotionally and physically of such a decision. You face judgment of others who have no inclination of what battles you are facing or what the “duty” to your family entails. It is very lonely and even though intellectually you know there is an ultimate end to the situation, there is shame, guilt and self-loathing for wishing it to be over during the worst of it. Seeing others struggle to cope and make the best of it lends no comfort as your heart tells you that no one understands or can possibly be going through the same thing.
As I looked into this caring and courageous man’s eyes, he spoke about the love for his wife and his sense of duty and responsibility to her. He spoke of how this disease forces him to re-visit many unpleasant memories of emotions he thought he could leave or had left behind. He seemed to feel so weak and beaten. He has no idea of the real strength he possesses or the level of supreme difficulty in caring for someone with Alzheimer’s disease/dementia. I have to assume the same is true for most of our beloved veterans. They don’t comprehend the courage they possess and the extent of the dedication they have to those they love.
My only hope is that all caregivers for someone living with Alzheimer’s disease or other form of dementia know the sacrifice for the battle is worth it in the end. The feelings of guilt, depression and sadness are not lifelong. Grace is possible. As always their efforts, selflessness and service are most appreciated by those they serve.
From my experience as a Care Manager, I assist family caregivers with these issues on a daily basis. It is my love for older adults and my passion and empathy for caregivers that gives me my greatest satisfaction. Facilitating a support group and using my ability to provide much needed support for the caregivers in the trenches brings joy in what is naturally a very tense and sad situation. I delve into many aspects of their daily realities and offer a more optimistic approach as an attempt to help caregivers manage their emotions and support them with tough decisions. All the while, I remind them to take care of themselves in order to be able to care for their family member. I like to think that the support and compassion offered builds a strong bond of teamwork. We are all in this together and we can rely on each other to get through this battle and maybe someday win the war.
Support Groups are readily available to aid those who are in need. Please contact Aging Outreach Services for a list of support groups in your area at 910-692-0683 or visit www.AOSNC.com. Email Brock at email@example.com.