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Being an Alzheimer’s Caregiver for My Parent Was the Hardest Thing I’ve Ever Done

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Being an Alzheimer’s Caregiver for My Parent Was the Hardest Thing I’ve Ever Done
8 min read | Jan 2022

Being an Alzheimer’s Caregiver for My Parent Was the Hardest Thing I’ve Ever Done

My parent's decline turned my life upside down.

Compassion / Baby Boomer / Libertarian / Education Researcher, Activist

From our earliest awareness of being alive, we know someone is there to nurture us, care for us and provide love. As we grow, we hopefully will mirror these same patterns to others in turn. We learn compassion by being there for the people in our lives. 

Alzheimer’s caregiving changes every single bit about what you thought you understood about nurturing, caring and loving. It attacks your understanding about acceptance. The person you have a relationship with is suddenly not the same. Situations become uncontrollable. Things become overwhelming.

Prior to their diagnosis, my parent had been living alone. My siblings and I had noticed that things around the house were not being done, and began to realize that our parent was a danger to not only themself but others. Before this change, I led a busy life as an educator and community leader. My relationship with my parent had been in pretty good shape. However, with all the changes in behavior and physical health, things between us changed drastically. Resentment and fighting took the place of humor and comity. 

My siblings and I decided to join forces and get our parent to a doctor. The doctor diagnosed their Alzheimer's almost immediately. The day after a very disturbing MRI was completed, my parent had just enough cognitive awareness left to decide that we were all going to the lawyer’s office. During our appointment we listened in shock as the parent assigned us our roles, not asking us if we could handle them. I was assigned as the healthcare provider, which meant a major move for parent, possessions and pets.

I had no clue where to start, and I felt like I was being thrown into a whirlpool.

“”

I Was Thrown in Over My Head

I am not a medical professional, and I wasn’t qualified to give my parent the care they needed. I felt like I was drowning. There was a daily grind of watching their mind and body decay, a lack of meaningful communication and a constant need for someone who could understand me. I was grieving the loss of a parent while all these changes were happening at once.

Not only was my energy being drained, but I felt like I was being pulled under by a raging current. Coming up for any type of relief only found me unsure of what life would become. How long was this almost prison-like existence going to drag on? Between information I found on my own, in conversations with others who’d been down the Alzheimer’s caregiver road, and from a book called The 36 Hour Day, it looked like this was going to take every hour of my life for the next 20 years. At this point, I felt like I might as well just crawl in a hole. 

My thoughts also raced ahead towards my own future. Would my children face the same horrors as I aged? These thoughts brought about a million more questions and uncertainties.

The 36 Hour Day suggested that finding an Alzheimer’s support group in my area, where I could find people walking the same path, could help give me clarity. Having been in other support groups before, I knew how helpful they could be. However, what I found were people who were more focused on laying out a decades-long sentence for me, rather than helping me navigate what was happening in the present. When I tried to explain my situation, it was glossed over. Instead of feeling uplifted, I felt more isolated than ever. I felt my life would never be my own again. I was crushed.

My immediate family became the only ones I could depend upon. However, due to our jobs, locations and ages, this wasn’t so easy either. Support looks very different from one relationship to another. My brothers only called or visited every once in a while. One was more supportive than the other, so relations with the other became fractured. I was angry not only at the situation, but at my brothers.

This was their parent, too. Why did I have the majority of the responsibilities? My children sacrificed much for me, yet I felt I couldn’t let them know just how excruciating all this was. My husband and I were physically drained, financially strained and emotionally bankrupt from the caregiving and all that came with it. Without the support I’d been seeking from others who had walked this road before, it was incredibly hard for us to make sense of what was happening.

My Parent's Behavior Made Me Embarrassed

Amidst all the daily bitterness I was experiencing, little bits of grace began to surface. My next-door neighbor was always ready to sit with me for hours, several times a week. After all the turmoil of the day quieted down, we’d sit outside and watch the stars, sip a glass of wine and simply exhale. Other friends occasionally brought hot meals so we didn’t have to cook. My children would call, visit, send text messages and give big hugs whenever we were together. My husband took over some chores when he saw that I was so overloaded I could hardly stand.

All these bits of grace were like rain on a parched field. Yet, as my parent’s Alzheimer’s progressed, the days began to blend together. Surviving replaced living. My day would start with getting my parent out of bed and to eat. At first, this wasn’t too hard. Then, my parent would walk to the living room and sit for the next eight hours. I would encourage walking, using the bathroom, even engaging them in simple activities like children’s games. Peppered in with these days were doctor’s visits. My parent’s neurologist consistently was shocked at their rapid decline over just a few months. 

During the summer, the first escape attempt occurred. It resulted in a broken pelvis and a brief stay at a care facility. “Whew,” I thought, “a bit of a break for my head and heart.” Or so I thought. The facility required check-ins so that a patient didn’t feel dumped, so I had to make daily trips there. That was until my parent tried to escape the facility. This was not only more stressful, but it was embarrassing.

After even more check-ins, plus an ankle bracelet for my parent, it crossed my mind that I could simply get in the car and drive to another place—somewhere where I could live without the daily crises. Then, the facility called and said that they had done all they could, and that my parent needed to come home. This took away whatever small break I might have had. I felt so angry with my parent. Upon their return, I was a bit unkind. It was then that my husband held me and said I had to remember that, while I knew who my parent was, my parent didn’t know me anymore.

“”

Grace Showed up Unexpectedly, in the Form of Caregiving

During the steep descent of what was left of my parent’s Alzheimer’s journey, mini-strokes became frequent. These also decreased physical movements. Eventually, after being rushed to the hospital (Was this the end?), the doctors determined there was no other recourse than hospice care. When it became clear that hospice was our only course of action, I faced a whole new set of concerns. In some ways, I was just as afraid as I was when tasked with medical power of attorney. 

In my mind, hospice only meant one thing: Death was very close. But grace showed up, and I learned that hospice meant in-home care for as long as needed, even before being admitted into a hospice facility. This new knowledge meant I would finally have a doctor and registered nurse to guide me, as well as the nurses assigned to visit my home.

Still, the stress of daily decline took a toll on me. On the days where I didn’t feel like I was drowning, I still felt I had to keep everything inside. Everyone in my home was suffering right along with me, and I didn’t want to add more strain by asking them to take care of me. At that point, I didn’t understand that sharing what I was going through could actually strengthen our connections.

It was on one of those really bad days that the biggest grace of all entered my life. In constantly searching for Alzheimer’s resources, I found a national charity offering grants to cover professional caregiver services. All I had to do was fill out an application and tell them how I could use the extra care and support in my in-home caregiver role. As I wrote down my story, I cried. When I read the story to my husband before submitting the application, I sobbed again. I was about to “go public” that I was in over my head and needed help. The promise of help was so needed, but I was also overwhelmed. What happened if I wasn’t selected? What then? 

A couple of months passed with no word from the charity. It felt like I was slowly sinking under the waters of despair again. Then one day, I received a knock at my door. It was the head of a local in-home healthcare service. I had been awarded 15 hours a week in caregiving that would be combined with the hospice in-home care. The two services even made it a point to meet together with me to draft a plan of action. Talk about grace! Suddenly, the waters above my head subsided. 

Six months into the new routine of hospice and healthcare nurses, my parent had declined enough to be transferred to a hospice facility. By then, they had developed Parkinson’s alongside their Alzheimer’s, so in-home care had become almost impossible. The caregiving grant and services were no longer needed. It was explained to me that moving from in-home to facility didn’t mean just hours or days; they might be there for an extended period of time.

Finally, We Found Peace

Grace had other plans. A week after being admitted, my parent’s body finally succumbed to their illnesses.

I was there every day of the last week of my parent’s life. No conversation was needed. The ability to speak had left them months before. No food was needed, as the ability to eat had left not long after that. So what did I do? I sat and simply talked out loud.

During that final week, my parent had a birthday. It was probably the most conflicting experience I will ever endure. The staff had baked a small cake and waited until I arrived to gather around my parent’s bed to sing “Happy Birthday.” While my parent was unaware, I was overwhelmed with so many emotions. I thanked the staff for their efforts, remembering the much more joyous birthdays I’d shared with my parent, memories that conflicted with the empty shell I saw before me in the bed.

On the day my parent finally passed from pain into glory, I wasn’t there. I had visited that morning and said my by-now daily prayers and goodbyes. Then I left. Around the time my parent took their last breath, I was laughing. I’d been given the gift of attending a local comedic play from one of my children. This final act of grace had slain the bitterness of what I had been through over the past two years. Watching the play was the relief I’d needed for so very long. As I was laughing at a funny scene, I saw my silenced phone light up. I knew by the number that it was the hospice center. There was only one reason they would be calling.

Finally, the drowning, gut-wrenching parts of this Alzheimer’s journey were over. I could begin the journey back to my life. I could begin to heal inside and out. Nothing would be the same for me again. It’s a work in progress, even now, four years later. And that’s OK, because when we share our stories, we connect. We gain compassion. Then, we can move on to what’s next.

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