Back to the Beginning
Our dialysis story — chapter 30
I started writing about our dialysis journey when Ben’s nephrologist said kidney dialysis was a certainty. My first post in this series was April 23, 2023. But I realize now that the journey started before then. The first sign that something was slightly wrong was in January. By February, I knew something was very wrong. But I didn’t know what was wrong.
After Ben’s long hospital stay in July 2022 and his fall and brain bleed in September, his kidney function began going south. But not that much. His kidney function had fluctuated in the past, once diving below 20%. With the help of a hematologist and monthly PROCRIT injections, his kidneys improved to 29%.
We didn’t worry when his kidneys slowed down after his illness and fall. We thought their function would improve as he regained his health and strength. And he was getting better — little by little.
In November, my daughter and her family contacted me about a Disney vacation they were planning for February. They wanted me to join them in Orlando. Afterward, their visit would continue at our home for three days.
Ben wasn’t not invited to join us in Orlando; he simply would never, ever spend one day, much less three, at any amusement park, even if he were physically able to do so. Disney is definitely not his jam.
When Daughter and I made plans in November, Ben was not physically or mentally capable of staying home alone, so I made arrangements for one of his daughters to fly from New York to spend the three days with him. She used to live here and relished the idea of catching up with her friends in our city, as well as spending time with her dad.
By early January, his daughter’s life changed drastically, and she could no longer come to stay with her father. After a deep discussion, Ben and I decided he could stay alone. He was much better than he was in November. He was walking daily, and his memory was almost back to what it had been before his fall.
As it turned out, a different daughter decided to come and stay with him. Not necessary, but knowing she’d be around gave me peace of mind.
The first inkling that something was wrong snuck up on me during the last week of January. Was it my imagination or was Ben walking slower, almost shuffling? It seemed he was falling asleep during the day more often, too.
I chided myself:
Nah, it’s my imagination. I’m just anxious about leaving him.
By the time his daughter arrived, the inkling was a nagging. Something wasn’t right with Ben.
I encouraged her to keep a close eye on him, to accompany him when he walked our dog, and to make sure he ate well, and I headed south to spend three days Disneying with my daughter and her family.
Ben’s daughter didn’t do much during her stay, rarely got out of bed before noon, and only walked with him at night — the shortest walk of the day.
Our Ring doorbell notified me each time he and Syau left on their walks, and I studied the videos as they arrived home. He looked tired — no, he looked worn out. His shuffling was more pronounced. Maybe I shouldn’t have left him alone. Walking Syau four times a day was too much, too soon.
During our twice-daily phone conversations, he assured me he was doing great, but he didn’t sound great. He sounded drained.
He told me:
You worry too much. I’m fine. Just a little tired.
I thought to myself:
He’s right. I worry too much.
His daughter was already on a flight north when I arrived home. My daughter and her family would leave Orlando later in the day. I was dismayed that Ben’s daughter had done nothing in the house. Not even the smallest tasks I asked her to do. She left without stripping her bed, although she knew my family would be using it. She left dishes on the nightstand and towels scattered around the guest bath.
When I expressed my annoyance with her, Ben became enraged — enraged. He defended her vehemently and loudly. His reaction was out of character and out of line. We argued. He swore at me.
Never before had Ben swore at me.
I was confused and worried but had too much to do to dwell on his over-the-top reactions to my annoyance.
My family stayed three days. It was hectic. Two extra adults, two teenagers, and an 18-month-old in our quiet home.
Ben was contrary and almost antisocial. While the rest of us gathered around the dining table to eat and talk, he sat glumly watching TV at a volume so high it interfered with our conversations. If I asked him to turn down the volume, he turned it higher.
Several times, Ben made annoyed comments to me that sounded threatening. Stupid declarations like I’m going to slap you silly.
I knew he didn’t mean what he was saying. He was never going to slap me, but why was he saying things like that? It was totally out of character for him.
Grandson and Granddaughter overheard and were worried, pulling me aside to ask if Ben was abusing me.
Of course not! I don’t know what’s going on with him. He never talks like that.
Then things got really bad. Syau’s medication was missing. Grandson and I looked all over the kitchen where I feed her. I went and asked Ben if he’d seen the pill bottle. He became angry:
Are you accusing me of something? Do you think I did something with her pills? Is that what you’re saying? Are you accusing me?
I replied:
No, of course not. I’m simply asking if you’ve seen her pill bottle.
He said angrily:
No, you’re blaming me, just like you blame me for everything.
What the hell?? Where did that come from?
When I turned to walk back to the kitchen, he pushed past me. Within seconds, he was scouring the kitchen for the pills. He acted like he’d seen them. He acted like he knew something I didn’t know.
So, do you remember seeing them? Where were they?
He screamed:
Shut up! Just shut up!
The kids were standing there, listening, in shock.
Ben went to the front patio, where our garbage can and recycle bins are. He started pawing through them. I joined him, figuring that Ben remembered, however vaguely, that he had seen the pills and may have taken them out with the trash or recycling.
I found the pill bottle in a bag of recycling that didn’t fit in the bin. I held them up and said,
Look! Here they are — I found them!
Ben replied:
I knew you would blame me. I knew it!
He pushed me aside and went into the house, yelling:
Get the hell away from me!
The kids heard and saw everything.
Daughter and her husband had gone out to dinner — alone. Grandson called them and shared what had happened. Daughter called me, furious at Ben, demanding to know if he was abusive to me. I assured her he wasn’t, but she didn’t believe me.
Before they left the next morning, Daughter and Son-in-law sent the kids to their van and held a mini-intervention. They accused Ben of abusing me — if not physically, at least verbally and emotionally. He denied it. I was silent.
I was silent because I didn’t know what to say. I didn’t know what was happening. I just wanted them to leave so I could figure out what was going on with Ben. I was scared for Ben, not of Ben.
He looked at me with pain and hurt because I didn’t defend him. Then, he yelled:
To hell with all of you!
Daughter said I could move to live with them if Ben was abusing me.
You don’t have to stay here. You have us. You have options.
I tried to explain that the way Ben was acting wasn't normal for him. I kept saying he didn't abuse me, but no one believed me.
Now, I and my family know that Ben’s bizarre behavior was due to his failing kidneys and the toxins in his blood. He was sick — very sick. We just didn’t know.
My last dialysis post was about Ben’s childish and annoying behavior at a doctor’s office. Someone suggested he may have a form of post-traumatic stress disorder from his fall and brain bleed last year. I hadn’t thought of that.
We don’t always realize that our mental and emotional health is directly related to our physical health. It’s all the more confounding when we don’t know we’re sick. Sometimes, it’s an accumulation of stress from past illnesses. Healing has to take place in many ways on many levels, and it doesn’t happen on a timetable.
Truthfully, Ben is still sick — will always be sick. He has many health problems that are controlled, not cured. I need to keep that in mind.
I also need to be kind to myself. It’s easy to forget that all of this is happening to me, too. Writing these posts is cathartic for me, but it doesn’t heal all the emotional pain I’m experiencing, nor does it erase the fatigue that overwhelms me some days.
I’m grateful that Ben is almost always the kind, funny, loving man who stole my heart nineteen years ago. Other than a few hiccups, like his impatience at the doctor’s office, he is pleasant, happy, and grateful.
Health and illness are complicated and confusing, and our healthcare system is as sick as its patients. Anyone who has chronic health issues and anyone dealing with someone who has chronic health issues is under a lot of stress. That’s why we need to remember:
Be kind. Be patient. Be loving. Be forgiving.
© Dennett 2023
Our Dialysis Stories:
