Sharing the Care: A Family Affair

By Valerie Stoudemire

The Diagnosis 

In 2008, our family started observing signs that things weren’t quite right with my mom. Our little ‘Bugsy,’ whom we affectionately always refer to her as because of her petite stature, was becoming different from the person we’ve always known. At first, we thought it was her still dealing with the grief of losing dad suddenly, her doting husband of 44 years. Things were happening that we didn’t even realize were symptoms of dementia until a few years later when we looked back in wonder at how it all began. 

As we still coped with the recent loss of our dad, we were now also watching our strong and healthy mother become more distant. Her personality shifted, and we couldn’t figure out what was going on. It was a very frightening time. She constantly asked us the same questions over and over, as if her brain was a broken record. We knew life was about to change again for us, but we had no idea what was in store. All I knew to do was pray for strength and patience as we took things one day at a time.

Juggling Schedules 

By 2010, things had progressed for the worse. I dreaded the days she had doctor appointments because I knew that she also hated those days. Because I knew I would be greeted with resistance from her every time, I had to create a story to fool her into going or promise her lunch, only to be loudly chewed out once we got there. Even getting her out of the car became a tug of war.  We repeated this same scenario every few weeks. 

Years passed, accompanied by mood swings and denial of needing help, and the struggle became more and more challenging. Checking on her every few days turned into daily visits, which turned into more than one visit a day, to bringing her over for sleepovers only for her to beg to go back to her own home.  We wondered how we were going to survive the pace. 

The Chaos

This was a period where we truly struggled as a family.  I would sit up half the night to block the front door so that she would not be able to get out. My brother and his wife would have their own tactics for keeping her safe in their home. It was a daunting circumstance. I often went into another room for a second of relief from the repetitive questions or combativeness. She constantly threatened to walk out, accused us of taking her belongings, or reminded us that “she is the Mother” and she “makes the decisions.” 

The Coping

Dementia is a cruel disease that can take a toll on the caregivers’ mental, physical, and emotional health. At the time, I couldn’t imagine how we would get through this. Our circumstances were tiring and even felt impossible at times

However, I still tried to show up with a smile for other people, activities, and events until it became too much! During this time, I learned my limitations and that I could not say “yes” to everything to make others happy. The cycle of exhaustion took a toll on us all, but the one thing we knew was that we would work this out together as a family to care for her ourselves and support each other as much as possible.

Sharing the Care

In 2015, my sister-in-love expressed to me and my brother that we all needed to get sleep and have restful nights. She suggested that we get Mom on a schedule so that she would sleep through the night. She also suggested daycare to give us some relief. Life truly started to look up for us!

We got into a routine and schedule that worked for us all. We each would have time with her consistently and keep her a week at a time between households. That way, we would each have time to recover and recuperate to be our best for her at all times. My mom continued to attend daycare while staying with my brother, which kept her on a regular sleeping schedule and allowed his family to continue their lives. We were able to get a good night’s rest, recuperate, and have time to ourselves while Mom got the care she deserved.  A situation where I thought I had lost control was starting to feel manageable. 

I now work part-time, and she can stay home on the weeks she stays with me.  My daughter has also been a big help and happily assists in caring for her grandmother. She is highly attentive and talks, sings, dances, and cuddles with her. I can also depend on her to perform the more challenging tasks. Mom literally went from helping us care for my daughter to her granddaughter helping in her care. 

Learning Priorities

Sharing care and learning to adhere to a schedule has made life much easier. Learning to set boundaries and prioritize was an even bigger lesson for me to learn.  Before I learned to say no, I would try to exchange weeks to fulfill other obligations, which was very stressful. Although social time is important, I learned the importance of prioritizing my mother’s care.

 Now, on my weeks of time to spend with her, I choose to pass on other activities or schedule another caregiver for important events. I no longer burden myself with commitments. If I can, I will; if I can’t, perhaps next time. I do not allow myself to feel guilty when I can not make an event, and I make sure I have scheduled time for myself.

The Calm

After 15 years, we have experienced so many stages of the disease. Stages that we didn’t even know existed. There was no book to direct us. Now, we are in the season of calmness. There is no more combative struggle, no more tricking her into doctor appointments, no more repetitive questions. In fact, we rarely hear her voice. Thank God for the recordings we have saved. 

 My family has learned to rest in all phases: the chaotic ones, the calm ones, and the sad ones, too. They all have a purpose. Being a caregiver is not a glamorous or easy task. You are responsible for the health and well-being of another human. Treat them with kindness and be mindful of your expectations of them. They are carrying a heavy load. Sometimes, they are exhausted, sad, or just distracted. But in the same respect, we wouldn’t have it any other way.

Continue to follow our caregiving blog series at https://www.drjeanneporterking.com/caregivers-corner/

2 Comments

  1. Lorri Baldwin

    Caring for both of my parents at different times, your story has reminded me each person’s struggle is different because each of us are different. What was so amazing in the caregiving journey is the personalities and responses differ from each person, whether it’s the caregiver or whose being cared for. Personalities and family dynamics all have to be taken into consideration. It is also humbling to every now and then to see a glimpse of your loved ones in this space that tries to take over. I know I would never have personally ever gotten through that challenge without God first, and other friends and family members support.

  2. Connie L. Lindsey

    Thank you for sharing Valerie. Taking care of our mothers is a blessing that requires exactly what you described, intention, attention and a plan for long term sustainability for the family. Love is stronger than dementia and we are created in love. May God bless and keep you and your family as you continue to love and care for your mother.

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