365 Days of Struggle

Exactly. 365 days. Door to door.

From when I rushed to NY the morning my mom called me upset and crying because my father could not get out of bed. To when I flew out of NY after my 94-year-old father moved his girlfriend into my mother’s house- 11 days after she died.

AND all of the in between.

September of 2022, my dad was septic and almost died. In late December of the same year, my best friend’s 22-year-old son passed away in a tragic car accident.  Mom’s dementia worsened as dad healed from sepsis. She deliberately stopped taking her life saving meds in the Spring of 2023, putting her in a battle with heart failure and kidney failure for months. In hindsight, I think this was her way of dealing with her broken heart. I am pretty sure she knew he was cheating on her after 55 years of marriage. An accident turned tragic, at 4 am on a Friday she fell and broke her hip in late July.  Her last week of life she was hospitalized. She had one good day. The day after necessary partial hip replacement surgery. It was a Monday.

This is the story of the last week of her life.

Tuesday, my mom worsened, she ate breakfast then refused to take her medicine. They called me for help, and she agreed to take her medicine if I was on my way to the hospital. When I got there, she insisted on leaving the hospital, she walked the floor with a walker trying to get to the car as I consulted with the nurses.

She had told me late Saturday night when I arrived that she would die in the hospital. This was in the back of my mind every minute of her surgery the day prior. At this point in time, it felt like I was in a dream, watching her revelation play out, she begged me to take her home.

We couldn’t let her go anywhere. She had mayor surgery 48 hours prior, thus putting her still in a post operative 3-day critical period.  She hadn’t had physical therapy yet and her surgical team had not been in for their daily assessment.  But she did not want to hear, listen, or comply with the rules. She had to leave immediately to go to her house where she would be safe (and not die). Her words to me and the staff were most hurtful and hateful.

We had to get her back in bed, she was too dangerous to herself sitting up, and she began throwing things at the nurses and I. Laying down was a safer option because her mobility was more limited due to hip surgery. We finally got her back in bed, a bed she never left. What happened in the next few hours was heart and gut wrenching. Dementia is a bitch.

By Tuesday evening she always had hospital staff by her side, so she would not pull out her iv’s, foley, or muscle her way out of bed.  A young nurse aid who lost her grandmother this way helped me cut her fingernails so she couldn’t pinch or scratch so furiously. What a strong young woman she was to volunteer her time once a week as she was planning her wedding just a month away. I decided then to spend as much time by my mother’s side because I was familiar to her, and maybe she will snap out of delusion.

I would get there early, mid-morning before hospital hours officially began. My dad arrived mid-morning, grief stricken, and we would leave an hour later for lunch and settle him in for his afternoon nap. I would go back to the hospital, and we would repeat the same process for dinner. I would go back to sleep in the uncomfortable recliner next to her bed. There was no sleep, some catnapping. I witnessed the worst of it, trying to protect my father and my brother from the horrors of the struggle my mother was enduring.

The initial diagnosis was hospital delirium, her body, brain, and nervous system were unable to communicate. As we made sure there was nothing that modern medicine could find or fix, late Thursday night the diagnosis became rapid onset dementia. Hospice was called, I met them at 11 am Friday morning.  Hospice was unable to take my mom as a patient until Monday morning, but they gave the orders to the hospitalist, and “Comfort Care” was to begin noon on Friday, hospice did not think she would make it through the weekend. If, by chance she did, we scheduled a meeting at 11 am on Monday.

An incompetent hospitalist prolonged my mom’s suffering for two nights, and I was by her side.

Interestingly, as the incorrect morphine drip was finally started, hours after the order was put in at 4 pm on Friday my mother opened her eyes and asked for a drink.  This was also moments after I had spoken to my very Catholic mother in-law for the first time, knowing she would hang up the phone and begin praying immediately.

The first fluids since Tuesday morning. The next few hours gave us a false hope as she asked to wash her face and let a nurse and I give her a sponge bath. Her eyes were open, she was able to control the tremors, it was the first lovely hour since Monday.  Then holy hell broke loose that night shift.

The moments of full-blown delirium and dementia are too raw to share.  She was clawing, biting, scratching, spitting, screeching, fighting to get out of bed for 5 days and nights straight. She would not open her eyes or wear clothes. I honestly thought she was possessed. Her awareness of her surroundings was heightened, I had never seen someone move with such precise movements with their eyes closed. She would screech either a minute before receiving a shot or a minute after, you could hear her down the hospital corridor. Her strength was off the charts, she could almost fight her way out of bed, and she was on a morphine cocktail.

By Sunday night I was mentally, physically, and emotionally exhausted. I left midafternoon that day, I could not make myself go back for the night shift.  As expected, when I called the next morning, the nurse said she had a very rough night but was now sleeping.

At 10:30 am Monday a competent hospitalist, with compassion in his eyes met my mom and I for the first time. He promised to stop her suffering. Hospice was wonderful, my mom’s body was finally able to be relaxed enough to find peace amidst the internal turmoil that I had been witnessing for 6 days now.

Now that my mom was peaceful, I wanted her desperately to enter the gates of heaven with a gentle, soft, happy heart. I was given various hospice materials by the palliative care staff, and I had energetic support from friends and family.

Interestingly, 3 of my cousins are also yoga teachers and healers. I have always been in close contact with Paula. She is also a physician’s assistant and taught me how to effectively manage my parents’ care as they aged. My other cousin was there when her father transitioned. I drew strength from connection as I entered unknown territory.

Late Sunday night, the night before my mom was officially in Hospice Care I was sitting on my bed in my orange childhood room with a glass of wine. I had an air conditioner from the 1950’s pumping cold air into this small, cramped space, a soothing candle and a soft playlist in the background. I was reading hospice materials and found a poem and a guided meditation that I felt would help my mom transition peacefully.

I entered her room on the morning of Tuesday, August 8th. I had gotten into the habit of telling her what time it was as I came and went and little tidbits of my day. I knew the end was near that morning because I had been learning about death, and I felt a slight shift in the air.  I checked her ankles and her urine output, and my suspicions were confirmed. Holding back tears I sat on her left side because I was very sensitive to the smell of death on her exhales. I remember smiling and saying that I know we did not see eye to eye on my beliefs. But I had come across a poem I felt drawn to share with her, she remained calm as I was reading to her. Tearfully, I share it with you now:

Giving up and Letting Go and Letting Be

Giving up implies a struggle-

Letting go implies a partnership-

Letting be implies, in reality, there is nothing that separates

Giving up says there is something to lose-

Letting go says there is something to gain-

Letting be says it doesn’t matter

Giving up dreads the future-

Letting go looks forward to the future-

Letting be accepts the present as the only moment I ever have

Giving up lives out of fear-

Letting go lives out of grace and trust-

Letting be just lives

Giving up is defeat-

Letting go is victory-

Letting be knows suffering is often in my own mind in the first place

Giving up is unwillingly yielding control to forces beyond myself-

Letting go is choosing to yield to forces beyond myself-

Letting be acknowledges that control and choices can be illusions

Giving up believes that God is to be feared-

Letting go trusts in God to care for me-

Letting be never asks the question.

-Hank Dunn

She became slightly agitated, and by that, I mean a crease in her forehead, and the rubbing together of her hands. I felt she was trying to tell me something, but as the agitation did not settle, I called the nurse. She gave her some medicine to help her soothe her nervous system.

I think she also had a sense of when my father was on his way to the hospital, because in her last three days of life I noticed her agitation increase minutes before he arrived.  True to my thoughts, my father arrived for his late morning visit 20 minutes later. He acted distraught as he had for days, begging her to open her eyes, and come back to him again, her agitation began to increase again. I politely urged my father to leave and took him to lunch, after all this had been day 10 of his hospital visits.

We had been having the conversation for days that mom would never wake up, that she her brain was not capable of letting her be the same woman of years past. I tried to tell my dad that the end was near, a conversation we had been having since late last week.

I spoke to my cousin who suggested I help mom transition. This was unchartered territory for me, but meditation was not. August 8th is Lions Gate Portal, and I always meditate. I decided to be guided through meditation at her bedside. She was resting comfortably, although I did notice that her breathing had changed since my visit a few hours ago. I sat with my legs crossed on an industrial plastic hospital chair. I was between her and the window that overlooked the roof, but the sky was Carolina blue, and the sun was shining. Just as the portal opened and the light shined through, about 20 minutes into the meditation she became very agitated. This should not have been possible due to the consistent increase in her morphine drip. I stopped my meditation immediately.

I called the nurse, and we relieved her anxiousness. I took out the beautiful meditation for the Eleventh Hour. I knew that it was important for her to leave her body, she had to relax. It was just her and I. I closed the doors, sat on the edge of her bed, held her crossed hands and talked about walking through a garden to the gates of heaven and all the people (and dogs) waiting for her on the other side.

The first time she got agitated at the gates. She loved gardening, as do I, so it was easy for me to describe a beautiful garden path, the different varieties and colors of her favorite flowers, the smells and beautiful meandering path. My intuition told me maybe she needed a gate filled with as much beauty as possible.

I googled “gates of heaven” and found a beautiful description of a layered jewel gate of heaven from the bible.

I began the meditation again, pausing in the garden talking about how my brother, father and I understood her need to transition and gave her permission to let go. I read about the 11 layers of the beautiful, jeweled gate with as much vibrant description as possible, she remained at ease. It was so beautiful, and her face was reflective of that peace. I described the gate again, as she walked closer and closer, she reached out to feel the smooth stones. I continued with the meditation prompts and I started talking about the people joyfully waiting for her on the other side and she started reaching for them, a knowing awareness on her face. With as much description as I could, I told her stories of those waiting to welcome her in heaven.  How much plopping down on Uncle Jim’s lap would seem to annoy him, planting flowers and shopping for moo moos with my grandma. Her sisters laugh that we called a cackle. As well as her “daddy” (she was the youngest of 5). I talked about her visiting my great aunts who lived in Washington DC. Let us not forget her furry friends, Nosey and Fred. Oh and Mr. Maynard, the banana man, who she was forever smitten with.

Then I heard my dad’s voice in the hallway. I stood up, took a breath, and welcomed him into the room. He had heard mom moaning as she was reaching peacefully through the gates and asked if she was awake. I led him to her so he could hold her right hand and rest his forehead on hers. I explained to him the meditation, asking him to change the way he was speaking to her, that it was time to let her go. He looked at me as if I had three eyes. I asked him to please tell her to “go to heaven or go to God”, that she had suffered enough. Teary eyed, and exhausted he did, and when he slipped up asking otherwise, I gently touched her left shoulder, and reminded her of the garden, gates, and people.  My dad could see her agitation wash away as I spoke. We worked together for a while.

Thirty minutes after his visit began, he had had enough, (his words) thankfully he was still giving her permission to go to heaven. It was 5:05 pm, I said goodbye telling her the time and date, promised to be back in a few hours after I settled dad, I left dad sitting by her side. A few minutes later he walked out of room 308, head hung low, feet shuffling, body supported with help from his blue cane.

I told the nurse her breathing was even raspier; I asked them to call me if the Eleventh hour was here.  My dad and I walked down the hall and out the hospital doors. The wind was blowing, leaves were falling, a storm was brewing. I got dad in his truck and watched him drive away. The sky cleared instantaneously and was once again beautiful Carolina blue the direction he was headed. I got in my suv, heading in the opposite direction, because I did not want to be gone for too long. The phone rang. It was 5:24.

The nurse went into check on her right after I spoke to her at the end of the hall. It was 5:20 and my mom had passed.

I climbed the stairs to the third floor; the nurse walked with me into her room. A sheet covered her body, her hands were folded gently on the outside of the sheet covering her body, just as I had left her. She looked peaceful. She was not there; the air was completely different. It was just a hospital room, void of life.

I believe she was waiting for my dad to give her permission. She was going to let go on her own time. The last person she opened her eyes for was my brother, on his last visit the day before. It was appropriate as she was his biggest advocate. Yes, she loved me, but she had had enough and the last thing she wanted was for me to come back. After all, she did not embrace the practice of meditation or eastern philosophy at all, she spent years telling me I was off the rocker. She loved my father, he was her person, he had the final goodbye.

I gently removed her wedding ring, said a little prayer of peace and gratitude, and left the hospital.

Mom’s last week was the second life altering experience in the last 365days. The first was my dad’s sepsis, and you can read about that also on Elephant Journal at https://elejrnl.com?p=3557619. The third is my fathers’ actions following my mother’s death. I am still trying to figure out how to go forward with my father, but that is another article, maybe to be told in the next 365 days. I will say that since his sepsis his rational mind has never been the same.

I decided pretty quickly that I would do whatever I could in life not to die like my mom did. Pema Chodron’s, “How We Live is How We Die” is my latest self-study. I meditate more, exercise more and eat healthier.  In addition to yoga, I cycle at least 20 miles a week, and am eating to lower my cholesterol naturally. Community and family is important to lean on.

In closure~

Dear Mom,

You always said I was strong; to others, not to me. It made me feel like you would be so awful sometimes just to break me. Well, you died, and I am broke and still breaking. I had no idea how strong I would have to be. Our relationship was never an easy one. I understand a lot more now that I have had to give up, let go, and let be.

I made promises to you on your death bed that I don’t know if I can keep. I can’t control other people’s actions. Mike told me I don’t have to that you are no longer bothered by earthly matters. More than anything I hope that is true. She and I had a lovely lunch as soon as I landed in NY when I came back for my first visit.

Russ is okay, we talk a lot, and I am so thankful he is my brother, I have learned so much from him. Thank you for raising us to be good people and do the right thing. We are doing very our best.

I wish we had more time together.

Love, Martha