The Last Goodbye

We arrived in Florida in January of 2012 and getting my mom settled into her room was faster and easier than expected. My husband was a significant help in setting up the rented hospital bed and dismantling the one we originally had in the bedroom. We reorganized the closet and placed mom’s belongings in it. Our home is one-story, and mom’s room was situated in a part of the house where she needed to turn left as she exited and then a right into the great room. It didn’t take her long to remember how to navigate from one place to another.

There was such a significant difference in her behavior. I noticed she’d forget to shampoo her hair or forget to rinse the shampoo out. She’d forget to flush the toilet. She’d stop a conversation mid-sentence and forget what she was saying. Often the opposite occurred. She’d repeat the exact same sentence two or three time within a few minutes. Once when I’d taken her to the hairdressers for a trim, she began to undress while waiting for her turn to get her hair cut.

I took her to the doctor for an evaluation. The diagnosis wasn’t good: dementia!

The doctor asked me how long this behavior was going on. I replied that she’d lived with me for only six months, and he was surprised at the rapid decrease in her ability to remember the little things. Her condition seemed as though she’d been like that for a number of years.

I assured him that while I lived in Florida and she in New York, I saw my mom twice a year, I spoke with her daily. My younger son, Jim and his wife who lived only an hour from my mom's house, saw her twice a month. Surely one of us would have noticed a decline in her mental prowess.

He said dementia was unpredictable. In many patients, it slowly took over control of the mind and body while in others, it sped through their minds like a jet plane. Assuming what I’d told him was true (I say assuming because he didn’t know mom except for what I had told him), mom’s condition was the latter.

Hospice was called in for a more complete physical evaluation since mom was in a wheelchair. Yes, mom had the rapid form of dementia. No one could predict how long it would take for mom to lose all her ability to speak but the progression would be: full conversation, a few sentences here and there, a few words, one word, silence. The nurse said not to be surprised if mom would sit and stare at nothing. I asked if she had any idea how long mom would live like that. She said it could be a few months or several years. There was just no way of knowing.

Several thoughts ran through my mind. Would she recognize me? Probably. Would she know my name? Maybe. Would she remember her life? Probably not I thought. Would she be able to make sense out of every-day things? No. Her memory would be hit-and-miss. Periods of clarity would happen but less and less each day.

For instance, I would clean mom’s dentures and hand them to her. For a while, everything was fine. Then she’d start putting them in upside down, sometimes backwards, somethings both. After about a year of this, I gave up and didn’t bother putting them in her mouth at all. I ground up all her food to make eating easier for her.

I told my sons about mom’s condition. My older son, Ken who lives in Orlando visited more often as his health allowed. Jim and his family who now lived 1300 miles away could only come once a year – and sometimes, he’d visit every eighteen months. It all depended on his job and his son’s school. If Jim had the accrued time, he could visit. Since his son is a special needs child, taking him out of school was often not a thing they wanted to do making Jim’s life not always easy for him to just pick up and drive his family to visit Florida. As for flying? Airfare for a family of four was too expensive. Taking all that into consideration, we Skyped frequently.

Jim and his family finally found their way to Florida and when they arrived, were taken aback at mom’s condition. She was frailer than when they last saw her only, only a year before.

Mom still recognized their voices but could no longer see their faces.

Jim and his wife spent every waking moment with mom with Donna often taking over the role of caregiver. She wanted to spend as much time with mom as possible.

One week later, they packed their car for the long, two-day journey back to New York.

That was in July of 2015.

Mom’s health took a severe sharp turn for the worst. She began rapidly losing weight. Her cheeks were sunken in, and her skin just hung on her bones. It was obvious that her time left on earth was decreasing way too quickly.

What we didn’t know at the time was that in addition to mom’s dementia, she suffered from osteoporosis, and cancer. She’d developed a huge tumor on her lower back. I thought of trying to get her to a radiologist for bone density scans, cancer screenings, and bloodwork but mom was by then, 95 years old. Was putting her through those tests worth it? Was trying to get her out of the house and in the car worth it? I thought of the pain mom would experience by moving her body so many times: from the bed to the wheelchair, from the wheelchair to the car, from the car to the wheelchair, from the wheelchair to the radiologist, etc. Too much movement for such a frail body.

While mom was officially no longer in the care of Hospice, I called their facility anyway and spoke with the nurse with whom I’d become friendly. She asked the same questions that thundered in my head. Was it worth it to put mom through all that when the dementia was now racing through her brain? Did I really want to put her in so much pain when the outcome was inevitable?

My answer was a resounding, NO.

I called my sons and told them of my decision, and they agreed. Mom lived a wonderful life and now that she’s started to forget most of it, it was time to make and keep her comfortable until the end.

Ken still made visits a few times a month and Jim and his family drove down to visit while mom still demonstrated some cognitive ability.

While mom didn’t speak much, I did see a smile now and then as Jim and his family spent time with her.

Their visit in my opinion was way too short, but Jim and his wife needed to get back to work and their younger son needed to get back to his classes. As I said earlier, because of his special needs, he couldn’t afford to miss too much school.

That was in September of 2015.

When my sons couldn’t visit, they skyped.

Thanksgiving of 2015 arrived quickly, and Ken and his family pulled into our driveway. I met them outside and warned them, “Just a heads-up! Grandma took a severe turn for the worst. She’s lost considerable weight and is more lethargic.” I didn’t want them to walk inside and see her in the condition she was now it. I was with her every day and even I was shocked at how rapidly her body was deteriorating.

Ken stood there and for a moment, too shocked for words. His wife asked about how long did I think she had left. No one knew for sure, but I knew it would not be long.

Getting mom to eat was a lost cause. I was reduced to feeding her jarred infant food. That’s all she could tolerate and even with that, she ate very little. She loved coffee but now could only tolerate tea. She had diabetes, which was now so far out of control, I wondered if that would be her final undoing. Her doctor said at this point, while it probably might not be, it no longer mattered. He advised that I should give her anything and everything she could swallow while she still had that ability.

Ken and his family arrived the last weekend of September, and by Sunday, October 2, were on their way back to their home in Orlando.

Hospice was now a daily visit and mom was placed on morphine to ease her pain. An oxygen tank was brought in to ease mom’s breathing. Then on October 4, 2016, the tumor on her back ruptured causing sepsis to race through her body and eat away at her skin, which was now clammy and felt “sticky” as though her life was literally seeping out of her pores.

I sat with mom for hours each day, holding her hand, talking about whatever came to mind, just to be with her and hopefully let her know that she wasn’t alone.

Mom held on until 9:40am, October 7, 2016.

When Ken and his family saw her only a few days before she passed away, I took a photo of them surrounding her while she sat in her lift-chair.

I had a bad feeling that Jim’s visit was going to be his last and while they were here, I had taken a photo of his family surrounding her. As Jim knelt by my mom’s side, holding her hand, and holding what would become their last conversation, I was able to take a spontaneous photo of a grandmother with her grandson.

Looking back at that photo, none of us could have predicted that as he and his family prepared to leave for their long journey back to New York, that photo would represent their last goodbye.