End of the Ride

Herb and Roz circa 1983

Herb and Roz circa 1983; together again at last

My phone rang as I was exercising at home on the last day of March. The hospice nurse attending to Mom called to suggest I get down there soon. “She’s transitioning.” This is hospice-speak for “her body is breaking down and she will die soon.” Mom had not been eating, and she was having trouble breathing. She was given oxygen to make her more comfortable and was in bed, resting. She was in no immediate danger, but she was getting closer to the finish line.

I had an appointment and kept it. I texted my brother, who was in California. I urged him not to rush home. It was simply an update.

Upon arrival at Mom’s home, the caregivers told me Mom had become alert before the hospice nurse left, drank a big glass of orange juice and ate a big bowl of applesauce. Her hands had been turning blue, but the oxygen helped perk and pink her up. I went into her room. I tried to wake her, gently, but to no avail. She looked horrible. The resemblance between the body in the bed and the mother I had known was almost non-existent.

I went home and thought, April is going to be the month.

Next morning I called to see how Mom was doing. “Oh, she’s fine! She’s getting dressed and ready for breakfast. She’s joking around. She’s back to normal.” This was no April Fool’s joke, but it sure felt like one. Rallyin’ Rozzy. The rollercoaster ride continues, and it’s making me nauseous.

I visited her the following week. Once again, she was in bed in the afternoon. No oxygen this time. She was just out of it. I looked under the sheets at her body. She had lost a great deal of weight. Her left leg was a stick. Her right leg looked more “normal.” I rubbed her shoulders and arms. After a while, her eyes fluttered open and she looked at me. I said “Hi” and she said “Hi” back; then she closed her eyes.

On the morning of Tuesday April 14th, I texted my brother and sister in law to wish them a Happy Anniversary. 31 years together. They had married on our parents’ anniversary. Mom and Dad had been married 33 years on their wedding day.

I had a lunch appointment, and as we were winding up our meeting, my phone rang. Through the din at the restaurant, the hospice nurse told me Mom was “active” and she didn’t expect to see her again. My first thought was, oh no, Mom’s getting violent again. But “active” is hospice-speak for “actively transitioning to death.” Mom’s first big dose of morphine had been administered and she was not expected to live through the night.

All at once it struck me. It’s April 14th, her wedding anniversary. Herby is finally coming for her. She’s going home.

I welled up and apologized to my colleague. Of course she understood and suggested I call my husband to drive me to see Mom. My first impulse is always “Oh, I’ve got this. I’m fine.” But then I thought, she’s right. I called Bob and told him what was happening and that I needed him to drive. Of course he understood.

Then I called my brother. Texting wasn’t appropriate for this message. I wanted to make sure he fully grasped the situation. He did, and said he’d get there soon.

I drove home to meet Bob and drop off some things. Then we headed to Montclair.

On arrival, I saw my brother’s car parked in front. The staff greeted me and told me my brother was with Mom, and that the hospice nurse had just left.

My brother stood at the bed, looking at the unconscious remains of our dying mother. Tears rolled down his face as he reported what the nurse had told him. In a whisper, he thanked me for taking care of all this.

We sat on the other bed in the room and started looking through Mom’s photo albums. I could have taken them home long ago. She hadn’t been able to look at them for months. But now they gave us a way to connect with the person Mom had been.

One album contained photos of my parents at the start of their “renaissance.” In 1984, the year my brother married, Dad had undergone coronary bypass surgery. He was given a great second chance, and he took it. He had an epiphany while he was recovering from the procedure: he hadn’t been the best husband up to that point, and he realized he loved his wife and wanted to make amends to her. So he went into semi-retirement, started taking trips with Mom and gearing up for a nice retirement. He bought a water-front house at the Jersey Shore. He got into boating. They sold the house in Brooklyn and bought their apartment in Florida.

Their first holiday together in 1984 was a cruise. We had seen them off from the piers on the west side of New York. At that time, Mom and Dad were in their fifties, the age we’re at now. In the pictures, Mom looked stunning. My brother snapped some of the images with his phone and posted them on Facebook. He was starting to have some epiphanies of his own.

The room was warm and one of the residents kept popping in and saying distracting things, so we’d closed the door, making it stuffier. Mom occasionally made little groaning or gurgling sounds. She seemed peaceful, though, and her breathing was steady.

I’ll admit this, because it may help others going through this process: “A watched Mom never dies.” I know that sounds horrible, but I felt that she wasn’t quite ready to go, and it wasn’t essential for us to witness her final breath.

I suggested that we didn’t have any obligation to stay; it was our choice. I further suggested my brother go to his wife and have a nice dinner together to celebrate their anniversary. He nodded and we all headed out.

Bob and I headed back toward home. He suggested the fancy Italian place in our town, but I thought China Paradise, a classic Chinese restaurant in Wayne, was a better choice. Mom loved Chinese and she’d enjoyed that place with us.

We had a nice meal and toasted Mom. When the bill came with the fortune cookies, I cracked mine open to read: “Leave your old troubles behind tonight.”

When we got home, I looked for something entertaining to distract me. We have a great music channel, and I turned it on. I knew I’d get the call before the night was over.

Sure enough, at 9 pm, I got the call. It was over. Hospice would be called to declare the time of death. The people at Mount Sinai would be called to pick up the body.

Around the time I made Mom’s funeral arrangements last summer, I also investigated dementia research. I wanted some good to come out of my mother’s misery, and I was able to enroll her in a study at Mount Sinai. At the appointed time, they would pick up Mom’s body, remove her brain for analysis and then deliver her body to the funeral home.

I had given the number to the head nurse at Mom’s home, and soon after the call from the home, I received another call from Mount Sinai offering condolences, gratitude and a request that I fax a signed release so they could take the body. I also contacted the funeral home to facilitate the transfer of the body. The funeral director I dealt with was very nice.

I slept pretty well, all things considered. In the morning, I rose to start telling the sad news. I sent some emails, posted on Facebook, and checked some things. Then I looked at Mom’s checking account. The last of the money from her long term care policy had been deposited. I couldn’t help but grin. Dad wasn’t going to let her go until she used every last cent of benefit money from that policy. Okay Rozzy, you put it to those bastards! Now you can go to the other side. Get in the limo!

There will be no funeral. There aren’t many people who would come. Being the last of four children, the only family remaining are my brother and his clan, Bob and me and our friends. So we’ll have a few parties to remember the good times with Roz and Herb, because, truly, all the best times involved them together, as a unit.

I’ll look at the pictures, scrub through the videos. I’ll weave together a tribute.

And I’ll finally take a vacation, knowing that I don’t have to watch for the dreaded phone call. I already got it. It’s done.

Mom’s body will be cremated and I’ll have the remains in five days or so. Next year, we’ll bring the ashes to Barnegat Bay, where Roz and Herb began their retirement and she had such great times. We’ll toast the two of them, reunited with the many family members on the other side, and ponder the change of the guard. We’ll laugh and we’ll grieve.

Mostly, I feel pretty good. I am sad, but I’m relieved. I’m tired, but optimistic. I’m in the middle of my own journey, certainly closer to the end than the beginning, but I’ve got a pretty good handle on what’s next. I look forward to a peaceful interval, followed by eventual turmoil with a heaping side of fun and gratification.

It sure is good to be off the rollercoaster. For now.

About traceysl

Author of the groundbreaking book "Dementia Sucks", Post Hill Press, May, 2018. Having cared for my father, who had vascular dementia and died in 2004, and my mother, who died on April 14, 2015 after a long fight with Alzheimer's disease, I have refocused professionally to helping others through my experience. My company, Grand Family Planning, provides Coaching and Support Services. I am a professional speaker, offering programs for businesses seeking solutions to recruit and retain employees who care for loved ones. In this way, I share my knowledge and give meaning to the tragic turn of my parents' journey through the misery of dementia.
This entry was posted in aging, caregiving, death, dementia, dying, Family, hospice, life changes, long term care, long term care insurance, planning, research, retirement, Romance and tagged . Bookmark the permalink.

7 Responses to End of the Ride

  1. lexiesnana says:

    This post was sad but refreshing. I hope you are rested.

  2. Condolences. Your last watch was a lot oike ours. As you state, they ofen won’t pass while you watch. We left for supper and then got the call and went back to hospice. It has been almost 3 months but feels like yesterday as the tears still come easily. Take care of yourself. You earned your break.

  3. Penny Wessenauer says:

    Thank you.. a beautiful tribute to a lovely family. Many of us are where you were with your mother before she passed.. you have written beautifully of the experience… now rest gently friend! ((hugs to you!!))

  4. Lori says:

    My deepest condolences, this is such a personal and intimate time…thank you for sharing it. While there are many commonalities in the end of life experience, it is the small unique moments that seem to be the most poignant and affirming. I hope you find peace in those and treasured memories of a life well lived. Take good care.

  5. Alan paryzer says:

    Beautifully captured Tracey. Eloquent and heartfelt. Thank you for sharing it.

  6. Going through this myself and just “stumbled” across your blog. Looking forward to the book. My mom has vascular dementia diagnosed in 2012. She lives with us and my wonderful husband is her full time caregiver while I work my dream job as a hospice social worker.

    • traceysl says:

      Wow, Elizabeth Anne, you are an extraordinary person and your husband is too. Caregiving is so challenging, and in my experience, vascular dementia is the cruelest type of cognitive decline. Thank you for stopping by. Please keep in touch and let me know if there’s any way I can be of service to you and your family. It sounds like you are doing important work, both at home and in the field. God bless you.

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