As caregivers, we witness and engage with the ebbs and flows of our care recipient's daily life. But knowing isn't always believing.
I deceive myself into believing my mother is okay when she experiences good days. I convince myself that her life span will be longer than the six-month window projected by the doctor.
Yet, when the bad days come, and the noticeable changes are striking, suddenly, I being to accept the reality of her health decline.
Bearing witness to your loved one's infirmity is heartbreaking and can contribute to emotional fluctuations.
Like most weekdays, I started my day in front of my computer to host a scheduled video conference call. My home office is next to my mother's bedroom; and close enough to hear her mumbling and groaning. When the call ended, I stepped into my mother's room to check on her.
I found my mother in bed, repeating one specific word, while her left arm was flailing. I asked my mother if she was okay, as I calmly rubbed her hand and arm to reassure her. Despite my effort to comfort her, she continued repeating the word, "stupid". But I didn't know what she meant by it. And she was in no condition to explain herself.
Meanwhile, my mother's spasms were forceful. Her left arm and leg were jerking as if a volcano were erupting inside of her body, producing harsh movements in her extremities. Even the left side of her shoulder started to lift from the mattress. I had not seen this type of movement from her before.
Her chest rattled as she took each breath and I noticed she was wheezing and gasping for air. I quickly concluded she needed a breathing treatment with a nebulizer to break up the mucus filling her lungs.
As I prepared my mother's breathing treatment, she appeared to be frightened by the machine although she had previous experience using it.
That was when I knew something was wrong. It instantly brought me back to the first time I'd felt fear and loss nearly twenty years ago. It was prior to my mother's diagnoses, when I was unsure of what was happening to my mother and how to be of help to her. Despite having over two decades of experience, I felt like a new caregiver all over again.
Minutes later, my mother's hired caregiver entered the room and did not notice the change in my mother's disposition.
She began the normal routine of undressing my mother and getting her up for the day. But my mother didn't respond to her or acknowledge the caregiver's presence.
When my mother remained uncooperative and continued to decline her breathing treatment, I made the decision to call 911 and have her transported to a nearby hospital. I wasn't certain this was the right call to make, but i knew we had exhausted all efforts to help er at home. It was time to involve medical professionals to determine the cause of her behavior change, and hopefully gain her cooperation for treatment.
My mother wasn't shy about voicing her objection to the EMS team about going to the hospital. Because I had health care power of attorney for her, I was able to override her decision and instruct the EMS squad to take her to the hospital to be checked by medical professionals.
When we arrived at the hospital, I was apart from my mother for approximately an hour until they found her a room, due to covid restrictions.
Once my mother was settled and hooked up to oxygen, a hospital administrator me in the lobby and escorted me to my mother's doorway where she gathered the necessary information for check-in. When I entered the room, my mother was asleep.
Within minutes of my arrival, she awakened in a bright mood and appeared to be back to normal.
I was stunned and pleased by the stark difference in her behavior. It was as if the morning's event had never occurred.
I sat and talked to her while she would sleep intermittently.
The X-Ray technician came in to get a chest X-Ray to look and all looked clear. Her vitals were good, and an hour or two later, the doctor cleared her to go home.
My mother was so thankful and happy, and frankly, so was I.
She was released with instructions to be connected to oxygen for all hours of the day and to see her primary physician within a week or two.
The diagnoses? A Multiple Sclerosis Exacerbation.
Although my mother was released from the hospital, she didn't feel well enough to get out of bed once we arrived home. Her spasms were more active than usual, and the confusion returned. It was obvious the MS Exacerbation had not ended, and I became unnerved.
My plan was to call her primary care physician, through an organization called Visiting Physicians. Because my mother's doctor recently left the Visiting Physicians' practice, a new primary care physician assigned to my mother's case was able to visit her within a week after her hospital visit.
Once the physician evaluated my mother, reviewed her chart and met with me to gather additional information, the decision was made to activate hospice care in my home.
When I heard the word hospice, my heart sank. My immediate thought was we are nearing the end, but since this day, I've come to learn more about hospice and have welcomed the process of care provided for my mother.
Next, I will briefly define hospice; what it is and what it isn't.
According to Wikipedia: The definition of Hospice Care is a type of health care that focuses on the palliation of a terminally ill patient's pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering. The National Institute on Aging defines Hospice Care as care reserved for those with an incurable disease and therefore, no more medical attempts are made to cure or slow the disease. This care is also provided for a person with a terminal illness whose doctor believes he or she has six months or less to live if the illness runs its natural course.
Hospice may be extended if the physician believes it is warranted as the patient is projected to outlive the six-month timeline. Hospice may be terminated if the patient "graduates" by an improved health care outlook, and the patient is eligible for an acceptance later.
From my experience, the care and attention to my mother's comfort increases with Hospice personnel visits. The difference for me is should a medical incident happen, my first call would be to hospice as opposed to the hospital for immediate medical attention and care.
At the time of evaluation by the hospice team, I didn't want my mother to know she might be receiving hospice treatment for fear it would make her want to give up. In light of this concern, I asked the personnel not to identify themselves as being from hospice.
Although the hospice personnel all wore clothing with the name of the company as a hospice provider, my mother didn't seem to share if she understood who they were. Her only concern was who was paying for the service, which made me chuckle.
I suspect my mother knows who they are and is comfortable with them helping. It seems to be more of an issue for me.
As time has passed since this event, I'm now dealing with the fear of leaving my mother's side. But truthfully, I think it's more of a nervousness that when the end of her life comes, I must realize, that this is not something I can save my mother from experiencing. My job in all of this is to honor her wishes and make her as comfortable as I possibly can.
Now, I want to hear from you. How are you coping with the changes in your loved one's health? What work are you doing for yourself to bear witness to their change? How are you actively acting on preserving and living your own life in the meantime?
Please share your feelings or experiences in the OCJ Forum. By sharing, you'll not only help others, but you'll begin to process your own feelings and emotions in a healthy manner.
Remember that you are living and have lived a courageous life. We are here to pour into you and ensure that you also find support and make time for yourself on your caregiving journey.