The Final Gift

This morning I arrived at Cheryl's house at 8:00 am. In the backyard the branches of the tall maple tree, encircled with green hostas,  were swaying back and forth in the wind, whispering that a rainstorm was imminent. The door of the one-story brick home in a beautiful neighborhood was unlocked, so I entered without knocking.

Cheryl, a woman in her eighties, wouldn't have answered even if I had knocked. The former psychiatric nurse is in the final stage of Alzheimer's. She was sleeping sideways on the twin bed in the front TV room. After using the phone in the kitchen to verify my arrival with the Community Nurses, I heard Cheryl stirring. I went back into the front room to say good morning. Her silver, chin length hair, cut in a bob with bangs, reminiscent of the Beatles hairstyle that was popular many moons ago, was tousled and a little greasy. Sitting next to her on the bed, I gently rubbed her back with my right hand. “Hi, Cheryl. My name is Jeanette.  I'm from town, and I'm here to have breakfast with you.”

Cheryl looked at me blankly and said “I'm going to be dead.”

“Were you dreaming?” I asked.

“What the hell are you talking about dreaming for?” she scolded.

Conversation with Cheryl was usually incoherent, so I chalked it up to her not feeling well that morning. Her mouth was dry. The look on her face was as if she tasted the nastiest thing in the world.

“I guess I'm just talking nonsense.” I replied. 

Sliding the hand I was rubbing her back with down to her bed sheets, I could feel the urine that had soaked through her clothes and bed sheets.

“Cheryl, you are wet. We need to get you cleaned up.”  

With her eyebrows furled she asked “You think I'm dirty don't you?” 

“No, but we need to get you changed.”

“I'm not a baby.”

“I know your not a baby. You are a very smart woman who graduated from the school of nursing. I saw a friend of yours at church yesterday and she told me you were one of the kindest nurses in town.”

“Let's go to the bathroom and get freshened up. I need you to stand up Cheryl.” Just as when my children were little, I learned to give her one direction at a time.

After a couple of tries and throwing the walker out of the way, Cheryl was finally able to boost herself up. She shuffled to the bathroom while holding tightly onto my hand. Her grip was as strong as a steel trap. Getting her to the toilet, was a victory compared to a few months ago when she would be slapping and hitting me all the way. I was frustrated and becoming fearful of caring for Cheryl. Every morning that I went to work it felt as if I was confronting a two-year-old who I couldn't pick up and put on the potty when necessary.

While searching the internet for a solution to get combative dementia patients bathed and changed, I came across a four-hour online Dementia Care Basics class from Alzheimers.org for twenty-five dollars. I immediately enrolled in the class and finished it that evening. Along with learning about the physiological causes of Alzheimer s, I learned first to connect with Cheryl by talking calmly to her and rubbing her back before I attempted to get her to the bathroom. It worked like a charm, and I began actually to enjoy our visits.

Once we got the bathroom, I rattled the toilet seat, so Cheryl had an idea where the toilet was. Alzheimer's affects vision, altering depth perception. Walking is problematic because it seems as if the patient is stepping into an abyss. I learned to put my hand under Cheryl's hand, so she feels steadier while walking. When she got near the toilet, I said, “Cheryl, I'm going to pull your slacks down so we can get your wet pants off.” Not wanting to be undressed she struggled to pull both the slacks and  urine soaked adult brief back up. From behind I kept pulling it down until she surrendered.

I began to sponge bathe her feet first so she could get accustomed to the feel of the wet wash cloth. She again said, “I'm going to be dead.” I thought for a minute about the book Final Gifts that a friend who also cares for the dying gave me. The book said that people who are dying often communicate to people before they die. The week before Cheryl was seeing children running around the house and wondered where the adults were to take care of them. Seeing visions before death was also a common denominator. I realized I needed to take what Cheryl was telling me more serious.

As I rubbed her feet and legs with lavender vanilla lotion, I looked into her eyes and asked “Cheryl are you telling me you are going to die?”

“Yes,” she affirmed.

I felt bad that she didn't have a coherent way to talk about her possible fear of dying, I replied “Yes, Cheryl you are dying. But you are going to a better place. You've suffered from Alzheimers for a long time, and that suffering will soon be over. You will be with your mom, your dad and your husband, all the people that love you and that you love.”

“Thank you for understanding me.”

I wondered how much she did know. Since she was a nurse, a superb one at that I am going to guess that she knows about the stages of Alzheimers and realizes she is at the end of the road.

After rinsing the washcloth out in the sink of warm water and washing her face, I helped her take her shirt off so I could wash her back. Her tune changed as quick as a 45 on the jukebox.

“Fat, fat, fat.” I wasn't sure if she was calling me fat or if she felt fat.

Deciding not take offense I said, “You have gained some weight. It was such a long winter, I think everyone put on ten pounds.”

Massaging her back with lotion, I softly sang “Row, row, row, your boat. Life is but a dream."  I don't know if it comforts her, but it certainly comforts me to know this life is only a blink of an eye in the eternity of timelessness.

“I don't understand.” she stuttered.”

“ I don't understand a lot of things either Cheryl.”

I coaxed her to stand up so I could wash her peri area with warm soapy water, powdered her up, so she felt dry and helped her get a dry adult brief and clean clothes on. I don't know if she feels any better, but I always feel good, knowing she has her hair brushed (without throwing the brush at me anymore), her facial hair shaved (without throwing the razor at me) and her teeth brushed (without her spitting on me.)

I hugged her and asked if she was hungry for breakfast, which she always is as she forgets when she ate last. And it's probably the only enjoyment she has left in life.

After changing the bedsheets, doing some laundry and washing the breakfast dishes I gave her son, Sam a call.

“It's no emergency Sam. This morning when your mom got up she told me was going to die. I'm not saying she is going die today or tomorrow but I think she knows that she's nearing the end of the road. Have you thought about the priest coming to give her the sacrament? I think it would bring her and your family a lot of comfort.”

“That's not something we've considered. I'll give it some thought.”

“Thanks Sam.” I hung up the phone.

When my two hour shift was up, I made sure Cheryl was settled with a snack and some water. She watched the Golden Girls as she waited for the next personal care aide to arrive.

Personal note:

About twenty years ago a woman who I worked commented that of all the ways to die, she wouldn't want to lose her mind. The Head Start teacher was at least fifteen years my senior. Alzheimers wasn't a household word at the time. I replied “I wouldn't mind, at least I wouldn't know what was going on. That would be better than knowing you were dying.”

I didn't realize at the time, how many types of dementia there were, which Alzheimers is only one.  Nor did I know that it diminishes the bodily functions. And after today's conversation with Cheryl, I am not so sure that the person doesn't know what is going on. I think they do, they just can't communicate it because Alzheimers has destroyed the part of the brain that controls speech. Did Cheryl want to talk about how she felt about having Alzheimer's before she was in the late stages? I don't know.

But I know I want to talk to my family about how I don't wish to go through the humiliation of being incontinent, eating like an animal, spitting on the floor, not knowing where I am at or what I'm saying.   I don't want to put them through watching me suffer. I just think it would be too much for them. My son Caleb watched his dad die from cancer, and it just about did him in. He was depressed and feeling suicidal until he got on some anti-depressants. We talk openly about conscious dying. The other day he told me he would go to jail if he had to help me die without suffering. I'm going to do everything in my power not to let that happen. I will choose to die on my terms if possible. It's not that I don't think I can endure suffering. I have no doubt that I can. I see people with less grit than I have do it every day.

I've read articles, most recently one about a professor from Cornell University who was diagnosed with Alzheimers. She chose to end her life thoughtfully. I believe it's one of the most humane things one can do for themselves and those they love. Maybe one of the reasons people find it hard to end their life consciously is because they don't talk openly about how they feel about dying. They don't say I'm sorry, they don't forgive, they haven't let go. I realize if I do become terminally ill, it will be hard for my husband, children, and grandchildren. But I know it will be even more difficult for them to watch me suffer.

In my opinion, keeping people alive at all costs is selfish and expensive.The medical cost for an individual to be in the ICU for just a couple of days or in a nursing home is exorbitant. Young families can't afford three hundred dollars a month for rent.  On the other hand, the elderly are paying over a thousand dollars a month to live in and 8 X 10 room, staring at four walls while someone daily feeds and changes them.

I get that some religions teach that one should die naturally, but what is natural about inserting feeding tubes or respiratory assistance to keep people alive? One woman of the Catholic faith told me that she didn't believe in ending one's life because she benefited greatly from caring for her grandparents. That's nice, but were her grandparents elderly with their minds still intact? If they were suffering from Alzheimers, where they only had glimpses of coherence, she would have been exhausted caring for them. Although Cheryl's children have hired help coming in to care for her they still have to make sure her needs are met twenty fours hour a day. On top of all the stress, they have to worry about getting Alzheimers someday and what it will be like for them.

I am all for conscious dying. I look at it as an insurance policy that I hope I will never have to use. If I age without a significant amount of suffering, I hope to die with grace. If not, I will end my life, hopefully with a celebration before my demise, rather than a funeral. I'm sure tears of goodbye will be shed, but I want those that are left behind, particularly my children and grandchildren to know that I am going to prepare a place for them. I am going ahead of them to forge a path where they will trod. I believe I will be there to welcome them into the next life, just as I was here to welcome them into this life.    

Next on my reading list is The Peaceful Pill.