Unchained Prisoner

Before you begin reading, please note that this is not a complaint letter. There are many accolades that come with being the caregiver of a disabled parent, spouse, or child. Most view it as an act of altruism with a direct seat next to the King in heaven. I can’t speak for the masses of caregivers, but I can personally confirm that I am not a saint. I am subject to the complete range of emotions that are common to the human species. Providing care and/or managing care for someone else requires extreme sacrifice and fortitude. One must also consider the physical and mental toll it takes on the manager. My own personal journey inspires this letter with the mission of spreading more awareness and perhaps fostering change. I titled this ‘Unchained Prisoner’ because, theoretically, I could walk away, but morally, I am not wired to do so.

I am my husband’s and my Mother-in-Law’s caregiver. My husband and I took vows, and he is his mother’s only child. This is more than an obligation for me. Although my husband is seemingly oblivious to his relation to this newcomer in our home, I know that his connection to her and hers to him should be honored as much as possible. While the transition continues to be somewhat challenging, I know the quality of her life and her life span have increased.

“Caregiving is simultaneously the most selfless and selfish act of humanity.”

Marie Lambert

My first experience as a caregiver began when our daughter was born with cardiac issues and Asthma. Her medical complications turned me into a mean-lean-monitoring machine! I was able to fully wake the moment there was a breathing pause or at the slightest cough or ruffle of the sheets. I’d already struggled with getting good sleep, but having a sick child took my sleeplessness to another level.

In 2008, my husband became ill and was hospitalized for months. Theoretically, he recovered and returned to work for a year before he had his first stroke. He has been legally disabled since 2010 and has suffered seven strokes, each one rendering him more childlike. It was two years before we got state-supported home care. After a few almost-disasters, our children and I adjusted our work schedules to minimize the time he was alone. The home healthcare system is a beast of another story! Our children are grown and live their lives in other states; I am his primary and default caregiver.

Caregiving is Not for the Weak

There is a myriad of personal sacrifices that are hard to think of at the onset. I was not prepared for the invasion of privacy that comes with having a stranger come into your home or the chronic schedule adjustments. A small piece of me dims whenever a new stranger enters my home. It often feels like an invasion that I have invited but cannot control. While they are there to provide care for your loved one, they also have unlimited access to all of your personal belongings In addition to making sure that I left no personal items or messes during the caregiver’s shift, I also had to put important financial documents under lock and key.

Consistently Unreliable

As time progressed and my husbands’ needs changed, the adjustments seemed endless. The amount of caregiver hours provided are determined by the state Support Coordinators at the healthcare agency. I had to adjust my work schedule and required day-to-day flexibility because of frequent call-outs. There were times when the allocated hours did not coordinate with my work hours and did not include travel time. Sometimes my husband was left alone for more than an hour. Many times, I would find him wandering outside or inside the house overflowing a sink. I have also come home to a completely thawed freezer of food because he’d forgotten to close the door. My life suddenly revolved around caregiver hours. These hours did not include weekends; I had to fight for them. I am an educator that was also a very active church member and community and youth advocate. I also host live radio and provide a literacy program for young children. Initially, it all seemed to work. I was paying friends and family members to sit for my husband outside of the caregiving hours if I could not take him with me. He was often in the studio and has accompanied me to teach several youth workshops. After more strokes, his baseline changed and it became more difficult for family or friends to provide the intimate personal care for him. Slowly, I began to limit my engagements and social interactions. I was reluctant to commit to almost anything. The workers were unreliable and I was at their mercy. Eventually, I resigned my full-time position for a part-time position with flexibility and no health benefits. The sacrifice also includes limiting passion projects and other employment opportunities and the financial impact is staggering. People rarely plan for the care of an elderly parent, sick spouse, or child but these are conversations that should be had early on with parents, children, and siblings. Although there is not always time to prepare, beginning the conversation may alleviate some of the challenges.

No-fault Isolation

After a stroke, there is usually an extended hospital and/or rehab stay. At first, family and friends rally and provide comfort and companionship. After week two, it wanes to one or two people, and by week four, it’s just me. My siblings would call to inquire and occasionally pop in to sit with me, but it became very isolating. While I sat for hours, days, and weeks, I began to question my friendships/relationships. I often felt abandoned and alone. As much as I needed and wanted someone to just come, I hated that I needed to ask, so I didn’t. I understood that people have to return to their regularly scheduled lives while mine had been stalled. When we transitioned home, the isolation was more subtle. While there were plenty of times I had to decline an invitation because of lack of caregiving, not being invited stung like that of a wasp; it was a slow burn. After a while, invitations were far and few in between, to almost none. Social media evoked both joy and pain. Many of my friends/associates celebrated birthdays, had cookouts, or girls’ night out and I loved the pictures, but it also reminded me that I was no longer a member of any of the circles I had supported for years. Today, I have embraced the amount of time I spend alone. While I can always busy myself, I’d be open to an invitation to lunch or an afternoon of running errands.

Mental Gymnastics

Having complete strangers in your home is quite an adjustment. Besides the constant struggle with caregiver consistency, personalities must also be considered. Every caregiver is not a good fit. Most times the challenges stem from lack of work ethic. I have a sign posted that asks, “Are you the kind of caregiver you would want?” I hope that it sparks awareness about how they show up. In my experience, agencies place caregivers according to their availability versus whether or not the client needs will be met. I won’t go through the laundry list of misfits; you wouldn’t believe me. But some of the most challenging have been non-English speaking, extremely young with no inclination to actually provide care, the person that live streamed our home and my husbands personal care, and the one that stretched out on our bed to nap and drool on my pillow.

I am warm and welcoming to each one and hoping they may be the one. I keep the instructions to a minimum so they are not overwhelmed. If they last more than a few days, I also have to pay attention to my husbands’ reaction to their interaction. He is typically very docile and cooperative. He doesn’t require a lot of interaction but he needs constant supervision. Although he doesn’t speak much, he is able to communicate discomfort or distrust. I believe that each person brings a spirit into our home. I pay close attention to any changes in my husband’s behavior and the energy in the room, especially after a few days. Having to gage the sincerity and integrity of others can be exhausting. Too many times, the person that greets me after work is completely different from the person my husband has spent the day with. Despite being very upfront about having cameras in every room, it is not a deterrent for stealing, physical aggression, or other inappropriate behaviors. When asking for a replacement, I have to consider if the agency can provide a replacement the next day or with minimal interruption. I also tread lightly so the caregiver that is being dismissed is not angered to the point of retaliation. Unless someone has been blatantly disrespectful, neglectful, or abusive, I am careful not to inflame the situation or ruin their chances at other employment. They just can’t work at our house!

What Can You Do?

Most people sympathize with those that are caregivers. People want to help but it can be difficult to find ways for friends and families to stay connected when someone is providing caretaking. If you know someone whose life involves caregiving for a loved one and you’d like to be supportive, here are some ways that might be useful.

• Call them occasionally or shoot a meaningful text. “Hey was just thinking of you guys, hope all is as well as can be expected.”
• Text and ask when is a good time for a quick chat. Keep your conversations reasonably short unless the person has indicated they need an ear. If you hear the person struggling to manage a task and talk to you simultaneously, bow out graciously and set up another time to catch up.
• Offer to make or purchase a meal. Managing the diet of someone else often leaves little to no time to focus on a good meal for the caregiver. It is easy to forget the foods you enjoy because most of the meals are centered around the patient.
• Send three dates and times that you’d be available to have lunch, offer companionship to run errands, or go shopping. This allows the caregiver room to make a schedule adjustment so they can enjoy some time away from home. If the schedule does not allow this flexibility, offer to run errands or pick up a grocery order.
• If you are considered a friend, invite them to your life events. While they may not always attend, the invitation is meaningful. The caregiver is more likely to send a gift or a meaningful message. This keeps your connection and says the relationship still has value.
• If reasonable, plan for a short visit. Again, multiple dates and times offer more opportunities for accommodation.
• Offer to take their car to be washed, gassed, inspected, or for an oil change. These tasks often take longer than expected, and if the caregiver’s time is limited, these are often the things that get neglected. You are not being asked to pay for these things, but the time you save is invaluable.
• Let them know you have a few hours or some time and would like to help them complete a task that may be on their plate.

Consider that you may one day become the caregiver of someone that you love. What would the adjustments to your life look like, and what sacrifices would you be willing to make? How would you like to be supported? If you are a friend or family member of a caregiver, supporting them does not have to be burdensome or costly. Kind and encouraging words could be just what they need to get through a day. Your friend may feel like an unchained prisoner, and your small act may be the key they need to unlock their freedom.

E. Marie Lambert

emarie@wowmagazine.org |  + postsBio

E. Marie Lambert is a self-proclaimed prolific writer and journalist. Her journalistic pursuits include creating and hosting 3 radio shows on WJYN Uptown Radio in Philadelphia, writing, producing, and hosting WPPM-LP Philadelphia’s Block by Block Community Radio, and as a contributing writer to WOW Magazine. During her tenure as a contributing writer at WOW Magazine, she won for most read articles for two of her 6 articles.

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