Mama and Me Part 6 – Her Final Month

Part of my job at the newspaper is handling obituaries. I’ve read about so many tragic deaths, but it never gets any easier when I receive them. I still tear up when I read obituaries for infants or those who’ve committed suicide or were involved in an auto accident. But one obituary really stands out above the rest. I received another one not too long ago. The first line read, “It is with great joy that … has been released from the grip of Alzheimer’s disease.”

Think about that. Of all possible causes of death, this is the one and only one I have ever read in which the family openly celebrates the death of their loved one. And almost all Alzheimer’s obituaries say pretty much the same thing. How many have I read that spoke about someone passing after a courageous battle with cancer or after a long and difficult fight with some other disease? Yet Alzheimer’s and only Alzheimer’s puts the person suffering from it and his or family through so much that the family openly expresses joy at their loved one’s end. This was the case with me and my family. When Mama passed on May 23, 2016, I was at work. Not by her side as I should have been, but sitting at my desk, wondering if that would be the day or if she’d hold on for another day or two. I got the text. I didn’t cry. I was too exhausted and emotionally spent to shed a tear. All I could do was bow my head, close my eyes and thank God it was finally over.

The previous month had been one of the worst of my entire life. Mom’s final decline was, well, it was terrible. No point in sugar coating it. This post promises to be the most difficult I have ever written, so please bear with me. I’ve tried writing about this sequence of events before, but just couldn’t. But now I think the time is ripe. I am ready. In honor of the three-year anniversary of Mom’s passing, the one-year anniversary of this blog and what would have been Mom and Dad’s 60^th wedding anniversary, I will describe the events that lead to her death.

Mom in the early months of 2016 was continuing in her near-vegetative state like she had for I don’t remember anymore how long prior. Everyday I prayed that God would take her. I would yell at Him in frustration. I just didn’t understand why she would continue to linger when she couldn’t move, couldn’t speak and couldn’t even interact or show hardly any emotion any more. She just stared blankly and opened her mouth and swallowed obediently whenever a spoon of food was placed at her lips. I would reassure myself everyday that although it seemed like it would never come to an end, someday it eventually would. Then in the final days of April that year, within minutes of arriving at work, I received a call from my sister, Marie, who was Mom’s primary power of attorney after Dad passed. As soon as I saw the caller ID, I knew she had to be calling about Mom. Why else would she call me when she knew I was at work. I ran outside to take the phone call. It was a beautiful sunshiny day.

“The nursing home called. Mom apparently had a seizure and fell out of bed last night,” Marie said. “They found her in a pool of her own blood and vomit. They called the ambulance and took her to the emergency room.”

Everything started crashing down around me. I went from hope that I was about to receive news that sweet Mama had passed peacefully in her sleep to a waking nightmare. How could this have possibly happened? My imagination immediately pictured her on that cold, hard floor for God only knows how long in absolute pain and misery. I couldn’t get that image out of my head. I almost couldn’t bare it. I couldn’t stop crying. I tried to tell my editor what had happened and that I might have to leave early, but couldn’t get the words out. A coworker hurried over to console me, and after a bit I was finally able to get some words out to explain. The sheer horror, however, was quickly coupled with anger, first at God; I literally yelled out, “Hasn’t she suffered enough?? She doesn’t deserve this!” My anger next turned to the nursing home. Weren’t the guardrails on her bed there to prevent this from happening? Were they up at the time? This was neglect, plain and simple. I wanted all of their heads on a platter.

I later learned that when she fell she had hit her head on something, likely the metal base of the bedside table, causing a laceration on the left side of her forehead, requiring several stitches. That whole side of her face and head also was badly bruised and swollen. The hospital cleaned and stitched her up and sent her back to the nursing home. The staff there said all they could do was give her some pain meds to help make her more comfortable. Despite her condition, however, the facility’s doctor refused to prescribe her anything stronger than extra-strength Tylenol. We pleaded for something stronger. She was in obvious, excruciating pain, wincing, shuddering and crying out with the slightest touch or movement. But for some reason, he obstinately refused. What was he afraid of? That she would become addicted? That she might overdose? That doctor became the first in line for the guillotine in my mind.

We asked about the guardrails, confused how they could have failed her so completely. The nurse said they weren’t in use because they are considered a form of restraint and so require the family to sign off on their use. We had absolutely no idea. I specifically remember them being used in the past. Had Dad signed off on them and then that became null and void after his death? Regardless, we were furious! Having regular seizures obviously made her a fall risk. Why in the world wouldn’t someone from the nursing home talk to us and say, “we really think she needs this, but we need your approval.” We signed the form.

One side of her bed was against the wall, so they only needed to raise the other side. When my sister, Liz, arrived a few days later, she found the bed had been pulled away from the wall for some reason, but the second guardrail hadn’t been raised. Angry, she asked the nurse why it was down. The nurse said we needed to sign a second form to raise the other one. Are you kidding me?? Why in the world wouldn’t they have told us this in the first place and have us sign both forms? And why did they feel the need to pull the bed away from the wall anyway? I was so shocked by the complete incompetence and negligence – frankly the seeming complete disregard for her well-being.

Immobile patients need to be moved on a regular basis to prevent blood clots, bed sores, etc. To move Mom, nurses used a mechanical sling that would cradle her a bit like a hammock and lift her from bed to chair and back. The corners of the sling had straps that attached to the machine. Every time they would lift her, she would shudder and cry out in pain. She also did this whenever anyone touched or moved her left arm and shoulder in anyway. We told the staff something more was clearly wrong. We immediately suspected a broken collar bone, but wouldn’t they have found this on they X-ray at the emergency room? Turns out, no X-ray was ever ordered. Really? Isn’t that standard procedure with all fall victims, especially elderly fall victims who have been as badly injured as Mom? Did the emergency room doctor, in his best medical judgment, truly think the X-ray unnecessary? Or was she just brushed aside because of her advanced stage of Alzheimer’s? And where were the nursing home nurses and doctor in all of this? Surely they noticed what we did. Her reaction to the pain certainly wasn’t subtle.

Our anger was to the boiling point. We demanded an X-ray be done, which, sure enough, showed a broken collar bone. The staff said they obviously couldn’t cast it or completely immobilize it. All they could do was try to be careful and to move it as little as possible. Yet for some reason, they still moved her in that sling, which squeezed her shoulders against her body; they still forced her arms through her T-shirt sleeves everyday when dressing her, even though we asked them not to. Liz, who had suffered a broken collar bone years prior, was outraged, telling them she remembers all too well just how painful it is and how putting her arm through a sleeve was nearly impossible.

We considered reporting the nursing home to the authorities, thinking we at least had grounds for neglect if not full-on abuse. My sister, Jo, who had worked in the nursing home industry for many years, said we might get better, faster results if we took our complaints to the facility’s administrator first. So we wrote a time line of everything that had happened since her fall and made the appointment. The administrator was very courteous and seemed genuinely angry by what we were telling her, though she maintained her composure. She would interrupt us every so often to say, wait, didn’t they do this? or you’re telling me they did that? She assured us she would personally investigate and swiftly correct all the issues. We demanded they immediately stop dressing her in her in her usual T-shirts and have her wear hospital gowns until the bone healed. We also demanded she be allowed a stronger pain med while it healed and that they stop using the sling to move her out of bed.

The administrator explained that they must move her because keeping her bed ridden can cause blood clots, pneumonia and other issues. We said we understood that, but with all due respect, a blood clot and resulting embolism would be a blessing. She had been on do-not-resuscitate-comfort-care status since entering the nursing home. Therefore absolutely no life-prolonging measures should be initiated. Yet the doctor there seemed determined to ignore this order. Our No. 1 priority was to make her as pain-free and comfortable as possible in this final chapter of her life – not prolong her life in any way, we told the administrator. She agreed to our demands, but we still had one problem. Mom’s doctor was still point-blank refusing to prescribe her comfort-care medication. The circumvent this, the administrator had a recommendation.

“Have you guys considered hospice?” she asked. Yes, I quickly replied. I had contacted a local hospice about a year prior to learn more about it and to find out when Mom would qualify. I told the administrator that the lady there had told me Mom’s doctor would have to sign a consent saying he believed Mom had only about two weeks left to live for her to qualify for hospice – yet another thing her doctor was refusing to do. The administrator looked at me with a bit of surprise and said this was not necessarily the case. She said hospice would come in and evaluate, and if they determined she was in the final stages of her life, they would fully take over her care, and the nursing home’s doctor would no longer be her primary doctor. This way hospice would be in charge of any comfort medications. We said absolutely, call today! We opted for a different hospice from the one I had initially called because this other one offered music therapy, something I knew Mama would love. We waited anxiously for the scheduled meeting a few days later.

The day arrived. The hospice nurse first met with us, explaining all their services and having us fill out all the paperwork and then went to examine Mom and speak with her nurses to get up to speed on her condition. We sat with Mom in her room while she interviewed the facility’s nurses. She returned to us and said Mom absolutely qualified. She said Mom hadn’t had any food or fluids in several days and believed Mom had no more than a week left. She said she was surprised because when she first contacted the nursing home to make a preliminary check of Mom’s condition, she didn’t think Mom would qualify because the nurse had told her Mom was recovering well and eating just fine. The hospice nurse was shocked to see this was not at all the case when she arrived. The nurse on duty in the face-to-face interview said she didn’t know who would have told her those things, but nothing could be further from the truth. As for the family, we were more angry than surprised that hospice was initially misled and wondered if her doctor was behind it.

The truth was, Mom had basically not eaten anything and had little to no fluids since her fall. She would clamp her mouth shut and look angrily at the person trying to feed her. And by the time hospice arrived a few weeks later, she was sleeping, or perhaps even slipping into unconsciousness, more and more often and was rarely alert. The hospice nurse couldn’t believe how bad Mom was and said we should have called them sooner. Nontheless, we breathed a sigh of relief. The end was coming and hospice was now in charge of her care.

The hospice nurse set Mom’s morphine schedule with the nursing home to alleviate her pain. A few days later the nurse met with us, very upset. Apparently the doctor, though no longer technically in charge of her care, went behind hospice’s back and ordered the nursing home staff to lower Mom’s dosage of morphine, which they did without checking with hospice first. The nurse said in her years of working in hospice, she’d never had a doctor actively try to prevent their care. She said she just couldn’t believe it and would be lodging a complaint. Her dosage was quickly returned to what was first ordered, and the waiting game began. I received a call from Marie on either the Thursday or Friday before her death, I can’t quite remember. Mom was entering her final stages and likely wouldn’t last more than a day or two.

I left work early to be at her side and my sisters and I along with some other family members coming in and out, spent the weekend with her. She was no longer regaining consciousness and hadn’t eaten or drunk anything for more than a week. Her organs surely would be shutting down soon from dehydration, but somehow her strong heart just kept beating. We spent three days watching and waiting, stewing in anger over the doctor’s and nursing home’s actions, sitting in her uncomfortably warm and stinky room.

One of the days, the local priest stopped in to perform the anointing of the sick and her last rites. Mom had not regained consciousness or even stirred for how many days, but as he placed his thumb on her forehead to anoint her, her eyes snapped open and she stared intensely at him. It was a startling, jarring moment. Her eyes were intensely bright and seemed to show her soul was more crossed over than in the land of the living. She closed her eyes again shortly thereafter, never to reopen them again. And yet, her heart kept beating.

By Sunday evening I was at my breaking point. I suddenly became very overwhelmed by everything and couldn’t stay at that nursing home another moment. I decided to head home. Once there I completely broke down. I stormed into the house and my significant other, Charlie, asked what was wrong. Through my sobs I choked out an angry yell: “She’s still alive; that’s what’s wrong!” I ran upstairs, flopped onto the bed and cried. Charlie gave me a few minutes before joining me. He didn’t say a word; he just sat down beside me, put a comforting hand on my hip and let me cry. I then sat up and yelled again, hasn’t she suffered enough? Why won’t God just take her? She’s had absolutely no fluids for more than a week, how could she possibly still be hanging on? I think Charlie may have said some comforting words – I really don’t remember – and then hugged me tight and let me cry.

I was tormented over whether I should go to work on Monday or return to Mom’s side. I wanted to be with her, but I only had a few vacation/personal days left and I knew I would want to use them along with my few bereavement days after she passed. Not sure I could face spending another day at that nursing home and not knowing just how much longer she would hold on, I made the decision to go to work. I don’t have many regrets in life, but this is one of them. A mass text went out sometime mid-morning. Mom had finally passed. I didn’t cry. I was too exhausted and emotionally spent to shed a tear. All I could do was bow my head, close my eyes and thank God it was finally over.

Interestingly, we were told shortly after that the nursing home doctor was not available to sign her death certificate. They had to ask someone else to step in. The nursing home doctor was conveniently out of the country when she died. Now, I could be completely wrong, but I couldn’t help – and still can’t help – but think this was no coincidence. After everything this jerk put us through, put Mom through, I think he knew he was potentially in some serious hot water and decided to flee until things cooled down again. Like I said, I could be entirely mistaken. I still wanted to lodge a formal complaint with the authorities, but the majority of my siblings wanted no part in it. All of us having been through the emotional ringer, most of them wanted to just forgive and move on – try to put it all behind them. I seriously considered making the call anyway but could never bring myself to do it. To this day, when I think about it, a voice in my head tells me I should, and I wonder what the statute of limitations is on filing a formal complaint.

That’s what happened from my point of view as well as I can remember it. I share this story not to point the finger of blame at anyone or make accusations. (Really!) I understand the nurses in particular at the facility are overworked and forced to divide their time among many patients, and everyone makes mistakes. Instead, I share this story with the hope others will learn from it. If you are faced with putting a loved one in a nursing home, don’t ever, for even one day, become complacent and assume he or she is receiving appropriate care. The family must be present as often as possible and speak up if anything is amiss. The family must be the eyes, ears and voice of the loved one not able to speak for herself. If the staff know the family is watching closely at all times, they will go the extra mile. If the family becomes complacent and slacks off, so too will the staff – no matter how nice the establishment.

Liz, Marie and sister Sue were with Mom when she passed. They told me later that day that Mom, even in her final moments, couldn’t resist one more practical joke. As she began to die, her breathing became increasingly intermittent. After a particularly long stretch of not breathing, my sisters wondered if this was it. Liz checked to see if Mom still had a pulse and lowered her ear to Mom’s mouth to see if she could detect any slight breath. Just as Liz lowered her head and put her ear to Mom’s mouth, Mom inhaled a loud and long gasp. My sisters, Liz in the lead, leaped back and screamed in fright. Then in spite of themselves, they cracked up laughing. Mama then exhaled what sounded like a final, contented sigh and breathed no more as her room filled with laughter. That was our Mama.

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