“Sometimes the strongest among us are the ones who smile through silent pain, cry behind close doors and fights battles nobody know about.” Four years ago, I became a full-time caregiver for my mother with Alzheimers. Four years ago, the self I knew became buried in pain, sacrifice and battle for someone else’s life. Today, I can say that my emerged revitalized self has new meaning, purpose and intention. However, the pain and experience has not ended, instead it has shaped my world beyond something I never foresaw.
Everyday, I smile, laugh, listen to others problems, console the person with a complaint about their life, and then continue to complete the duties of a caregiver for a loved one living with dementia. Friends, coworkers, colleagues and acquaintances will ask how they can help, state that they cannot believe the sacrifices I make, or just sit and listen with no obvious solutions to gift you. However, because this is my walk, it is my responsibility to share this experience with the world. The lack of solutions is to be expected and sometimes doesn’t easily exist. The reason for that, is because you are the solution.
Caring for a person with a chronic illness for a long period of time is truly one of the most character-building life activities that one can go through. People will lose their patience with your experience, lose the level of empathy and understanding they once had and begin to dissociate from your world, due to your continued limitations you have. More frequently, I have had to say “I can’t”, “thank you, but no thank you”, call out from work, and look for creative solutions and opportunities. You see, the length of caregiving is never really discussed as an overall impact on ones health and well-being. It can be a long brutal obstacle course and the stamina and endurance that is built cannot be compared to any other race.
In today’s race, I write this blog from the hospital, as my mother is undergoing anesthesia to have three MRI’s. Multiple doctors have ordered MRI’s for her brain and back due to her Alzheimers and severe Osteoporosis. The hospital and I have become very familiar and the atmosphere of illness, stressed families, and emotionally-numb medical staff are now a major part of my world. The starting line-up to todays course starts with requesting time off a week ago. That in itself can be one of the biggest hurdle, negotiating time off with your employer.
I took one week off from work to handle my moms medical needs. I did not take off to vacation, go on a girls trip or romantic get away. I used my annual and sick leave to care for my ailing mother. I want to describe a couple hours for you today from the lenses of a caregiver. I wake up early (4am) and grab a quick cup of coffee. I, then move to my mothers room, where I awake her from sleep and orient her to the conscious world. This means telling her what time it is, to take off her clothes, get in the shower, dressing her, grooming her, giving her medications, all before jumping in the shower myself. This entire process takes about 2 hours every morning.
As we drive to the hospital, I put on her favorite playlist to relieve the stress I know she feels. She taps her foot, but does not speak. She knows I am about to take her to a place she abhors, the hospital. We arrive in a flurry, as I always do, because no matter what, there is never enough day-time hours to handle all life tasks as a working caregiver. She reluctantly gets out of the car, and then begins the psychological fight. The slow walking, the attitude, the non-verbal disdain for anything medical, followed by the shut-down. There is no communication, no eye contact and definitely no commitment to reality or owning any part of the experience. It falls on me to be two fully-operating brains.
We enter the hospital and here comes the ignorance of Alzheimers from the medical community meeting me at the door. They begin to ask her questions that she obviously cannot answer and then look at me, like “what’s wrong with her.” I point to her diagnosis on paperwork and look at them with expectation of behaving decently and with knowledge of the disease. Nope, nope, wrong expectation Heather. As the technician asks me why am I signing papers for her, I look at him and have to state, “I am her Power of Attorney and she has Alzheimers Disease!” Yes, I had to discuss my mothers cognitive inabilities in front of her, due to the lack of training and awareness around this disease.
Next round of staff emerge; the MRI tech, the lab staff and nurses, all with whom I have to go through the same process, as my mother declines more into her protected isolated shell. As they hook my mom up to IV’s, her eyes are closed and tears run down her wrinkled tired face. I am simultaneously filling out paperwork, answering medical questions and consoling her, wiping her tears and holding her hand. As they whisk her away, I am told to go sit in the lobby for three hours. I look around and see sterile walls, no form of calm or tranquility and decide to excitedly (not) nourish myself in the hospital cafe and write this blog.
You see, the caregiver is the strongest foundation a loved one could have and the whole entire bridge to the healthcare system. We hold every answer, offer every solution and make ongoing recommendations in order for our loved ones to have some sort of quality of life. We should be the priority in the preventative sense as we try to reduce the impact of disease in this country. Caregivers should continue not to accept poor treatment, demand to be prioritized and integrated into all systems, policies and practices across the healthcare industry,
I described one morning of a caregiver’s world, from 4am – 8am, to be exact. Multiply that by 12 more hours for the day, times 7 days a week, 4 weeks a month, 12 months a year, for how many years? Think about the toll this has on a caregivers world. It is monumental. Try to describe this world to an employer, a friend, and even medical professionals. The caregiver, as an individual, is hidden beneath the disease, overshadowed and forgotten, and yet remains the kryptonite for the one diagnosed with the disease. Employers, hospitals, medical communities, fitness and wellness centers, community organizations MUST focus on the caregivers experience in order to alleviate the stress and burden of caregiving. The caregivers risk factors for developing a chronic disease is astronomical. The physical and emotional impact of dementia caregiving resulted in an estimated $9.7 billion in healthcare costs in 2014.
I took a snap shop of my morning, not for pity nor glorification efforts, but rather to continue to describe the reality of the burden fo the caregiver role. Society needs to address this role in all forms, as a Public Health crisis is on our hands. Caregivers, continue to speak out about your experience, advocate for yourself and do not, do not give up on you!
“Before you give up, think about why you held on so long”