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From the time my husband was diagnosed with Alzheimer's Disease, my goal was to care for him at home. He died last month, at home, in my arms. This episode shares deeply personal details about the changes in our relationship, the loss of physical...
From the time my husband was diagnosed with Alzheimer's Disease, my goal was to care for him at home. He died last month, at home, in my arms. This episode shares deeply personal details about the changes in our relationship, the loss of physical intimacy, the physical realities of death, the practical considerations of a funeral, and more. Mentioned:
https://www.myspousehasdementia.com
https://www.celebrantinstitute.org (Find a Life-Cycle Celebrant)
https://www.marycoburn.com (Life-Cycle Celebrant)
https://dinastander.com (Death Doula and Life-Cycle Celebrant)
https://www.carmonfuneralhome.com (CT - green funerals)
https://client.tribucast.com/tcid/2912551791 Link for the virtual funeral
Are you caring for a spouse with dementia? Have you written a book about dementia? Please let me know. I'd love to speak with you. Send an email to: zita@myspousehasdementia.com
MODIFIED TRANSCRIPT FOR EPISODE 10: Death and the Funeral
From the time my husband was diagnosed with Alzheimer’s Disease six years ago, my goal was to care for him at home. It wasn’t until the last two years that I realized how challenging that goal would be. I’m obviously not happy to say my husband died. Given that Alzheimer’s is fatal and there is no cure, I am happy to say that my husband died at home, peacefully, in my arms, with my daughter holding his hand.
I ended episode 9 with the hospice nurse telling me it was time to call my daughter Laurie, to let her and other family members know that if they wanted to see my husband one more time, they needed to come soon – as in 4 to 5 hours. It was Monday, around noon.
A few weeks earlier, Dick sat at the kitchen table and said, “I’m afraid.” He wasn’t showing anxiety or agitation. It was a statement. I was standing at the sink. I walked over to him and we hugged. I put my hands on his shoulders and said, “I’m afraid, too. Honey, I don’t know what happens next. I just know your brothers and sisters are waiting for you. You see them all the time. Beverly comes here every day to see you.” He nodded at the mention of his older sister, the one who took him under her wing when they were children.
I felt committed to the truth. I was afraid. I was afraid that he would suffer.
I also felt committed to his truth. Were his visions merely memories projected onto some kind of movie screen in his brain? I don’t know. And it doesn't matter. To him, the images were comforting. And I was also committed to his comfort.
So there we were that Monday. I called Laurie. She and several friends were at her house, cleaning, painting, packing, weeding the flower beds. She and Tim, my son-in-love, had just put their house on the market. An open-house was scheduled for Wednesday and there was still a lot of work to do. Laurie had her hands full so she put me on speaker phone. Of course, that meant everyone heard what I had to say.
Immediately, one of the friends called her son, Ryan. He and Logan were both managers at a Boy Scout camp. Ryan worked in the office and would be more likely to have his phone with him. Much later I heard that when Ryan found Logan, he held out his phone and said someone wants to talk to you. Logan said, “Man, I can’t take a call now. I’m working!” Then Ryan–who knew how close Logan was to his Pepe– said soberly, “Dude, it’s your grandfather.”
Here at my house, the hospice nurse filled more syringes with liquid morphine and reviewed the instructions with me one more time: When it’s over, don’t call 911. Call the Visiting Nurses. A nurse on duty will come and make the pronouncement. That nurse will call the funeral home.
When it’s over. The sentence was deceptively simple. I nodded. Yes, I understood.
I called my sister Laurie in Florida and asked her to call our other sister, Eileen in Virginia. It’s not that anyone could do something or say something that would change the inevitable. I just wanted my sisters to know … because I knew they would hold me in their hearts ….just as Laurie and I held Eileen nearly 7 years ago when her husband died … just as Eileen and I held Laurie 2 years ago when she had a stem cell transplant for multiple myeloma.
My sewing table was in front of the window, right at the foot of the hospital bed. I hadn’t felt like sewing in days so I turned the chair around and moved it next to the bed. I wanted to sit so that I could stroke my husband’s cheek, touch his hair. Touching the head is such an intimate gesture. When an intimate relationship is in trouble, the first kind of touch to disappear is hand-to-head.
The physical intimacy of our marriage had faded over the years. We made love three times in 2019. Yes, I remember. When you’re young and the physical desire for each other is intense, unbridaled, you merge together like the flames of two candles. Years pass and that fire is less consuming, more comforting. The afterglow becomes the treasure. It’s in the afterglow that you gather memories.
Physically, there could have been one more time. It was in January of 2021. When we woke up that morning, my husband’s body remembered what it was like to be a young man. He looked down at himself. Startled. I wish I could tell you that we seized that moment and recreated the passion we once shared. But by that time in the progression of Alzheimer’s, our relationship had changed. He’d still hug me several times a day and ask, “You still my girl?” And I’d always say, “I sure am. And you’re my guy.”
Now I was also his caregiver. I showered him, helped him brush his teeth and put on his clothes. I helped him eat. I helped him go to the bathroom. I changed his underwear. I yelled at him whenever he got close to the stairs. I yelled at him when he put his foot into the toilet. I yelled at him when he picked up the electric can opener and tried to drop it in a sink full of water. And one day when I asked a question and couldn’t get a straight answer out of him, my frustration peaked and I yelled, “What do you want?” Sitting on the edge of the bed, he said, “I want you to be nice.”
I changed that day. I saw how my anger hurt and confused my husband. I’d like to tell you that I never got angry again but that wouldn’t be true. What changed was that when I got angry, I no longer hid my fear. Now, I’d yell, “Don’t put your foot in the toilet! You could get a serious infection.” Or, “Get away from those stairs. You could fall and break your neck!” Or, “Put down that can opener. You could get electrocuted!”
Of course, I knew my husband was going to die. Alzheimer’s is fatal. There is no cure. I couldn’t change the outcome. But I could make sure he died peacefully, without pain, knowing I loved him. He could die at home, with me.
It was now sometime early Monday afternoon. The nurse had gone. I sat beside Dick and talked to him. I didn’t know if he could hear me. I didn’t know if he could understand. I just knew it would be hours before Laurie and Logan arrived and I wanted these final hours for the two of us. Not that we hadn’t had plenty of time, just the two of us, for the last 4 years, but this was different.
Sitting there next to him, I never said, “Do you remember…?” Because I knew he couldn’t. Instead, I told him what I remembered.
Laurie and Logan arrived around six o’clock. Both were relieved to know Dick – Pepe – was still alive.
Laurie took a chair from the kitchen and sat so she could hold her dad’s hand. Logan stood beside me. Their eyes were red and swollen, just like mine.
Time passed. Dick was breathing hard. Labored breathing signaled he was in pain. I had given him morphine in the wee hours of Monday morning. The calmness that followed lasted about 10 hours. Then I gave him another dose. This time, the calmness lasted 6 hours. The next dose 4 hours; the next barely 2. Was he still in pain? Was I doing this right?
It was near 11 at night. I stepped into the kitchen. Next to the coffee pot I had a jar of local honey and a little ceramic container of Stevia packets. On the back of each green packet of the sweetener is a message. I had taped three empty ones to the wall so I would see the messages every morning. I looked at them now. One said: Trust Yourself. Another said: You know you can do it. The last one said: Yeah. You’re doing it right. Was I? I saw only one compassionate option. I gave Dick another dose of morphine. He seemed peaceful again.
Logan had been doing hard, physical work all day and was exhausted. He said a final good-bye to his Pepe and went to bed. Laurie and I kept vigil.
My husband was in what the medical community calls “active dying.” It’s not a process that can be stopped. There’s no going back. I thought of being in the delivery room with Laurie when she gave birth to Logan. She was in labor, in “active birthing,” a process that couldn’t be stopped. There was no going back. But, the feeling that night and the feeling this night … oh, so different.
The lights in the kitchen and the living room were on, but I kept them turned off in the dining room. I hoped a dimly lit room would help my husband relax. Laurie and I still had plenty of light to see what was happening.
About an hour later, around midnight, Laurie noticed a change in Dick’s breathing. It had slowed down even more. For decades, he suffered from severe sleep apnea. He’d be sound asleep and just stop breathing. And then gasp for air. He was taking those gasps now. Two seconds between each. Three seconds.
I thought about our little backyard wedding. I thought about how we liked to cook together. Well, I’d cook. He’d clean as we went along. Together, we painted walls, planted a garden, traveled. We’d pay bills together. I’d write the check. He’d put the stamp on the envelope. Simple things. The memories floated like bubbles. As each bubble popped, I felt awash in a feeling of gratitude. We’d had a good life.
His eyes were half open, fixed in a straight-ahead stare, like shards of sea glass that the trauma of his life had tumbled smooth. I had lowered the bed rail. There was no more danger that he’d climb out and fall. Plus, without the rail, I could slide my arm under both of his shoulders. I rested my head close to his. I kissed him and whispered the last full sentence he had spoken to me: ”I have a lot of love for you today.”
I had put a lot of pillows on the bed, most of them to cushion the bed rails. Earlier in the day, I had changed the case on the pillow right under his head. The pillowcase was pink linen. I had made it with love. It was soft and smelled of the frankincense and myrrh laundry soap I use. The night felt sacred.
Now and then, I’d ask Laurie, “Time?” and she would answer: 11:13 …. 11:42 … Midnight … 12:10… Was that his last breath? No. 12:15…12:25…12:31. As though I were the one being comforted, being told it’s okay, you can rest now, I closed my eyes and let my head sink into his pillow.
“Mom… Mom, he’s gone.”
I started. “Time?
“12:33.”
She reached for my hand. We cried.
I’ve had more than a few psychic experiences in my life. The big ones always came with a burst of red light, rays that extended to the walls, the floor, the ceiling. I expected to see the red light when Dick died. There was nothing. I didn’t hear anything. Didn’t smell anything or feel anything against my skin.
But I knew the exact time of death. I could cast an astrological chart. It would give me a picture of the cosmic energy at the moment his spirit left his body. Had his stars aligned? Had he left this world in real peace, not just without physical pain? I needed to know.
Laurie got up to get us more tissues. I sat there, suspended above a threshold – on one side “married,” on the other, “widowed.” My heart hesitated. It wasn’t that I had a choice. It was that I knew the terrain on one side. I had traveled it with him for 41 years… 41 years and 8 days. The other side loomed like a giant shadow.
I called the hospice nurse on duty. I told her my husband had died. She offered her sympathy and said she’d be out shortly to make the official pronouncement and sign the death certificate. Before we hung up, I said, “I don’t want to call the funeral home right away.” She answered, “There’s no rush.”
Back in 2020, I had become certified as a funeral celebrant through the Celebrant Foundation & Institute, the same organization where I had trained ten years ago to officiate weddings. I had already officiated several funerals and memorial services. I knew that in Connecticut, it was legal for families to keep the body of a loved one at home until the time of cremation or burial, though the disposition of the body has to occur “within a reasonable time.” When that time comes, the body can be moved only by a funeral director.
When Dick went into the hospice program, I was told to have a funeral plan in place for when the time came. Part of my plan was to keep my husband at home for several hours, long enough for me to feel I had said good-bye.
My friend and colleague Dina Stander is both a Celebrant and a death doula. She makes burial shrouds. I planned for her to help me with the ritual of washing the body. I had purchased yards of fine, handkerchief weight linen, both black and white, to make the washing cloths…but the fabric sat in the corner, untouched.
My plan also included doing a ritual I had created several years ago for the funeral of a young Pagan woman. The ritual is about releasing the burdens of the spirit. I will do that ritual later this year, in November, when I believe the veil between the worlds of the living and the dead is thin and communication between the two worlds is easy.
The hospice nurse arrived at 1:30 and pronounced my husband dead. She asked if I wanted her to call the funeral home to come and pick up the body. If I chose to wait, I’d need a lot of ice to pack around the body. I’d need to be lucky and not lose electricity, not with daytime temps brushing up against 90. I turned to my daughter. We had already commented on the odor that signals the release of all fluids and the beginning of decay. And I did not have a lot of ice. We shared one of those “knowing looks.” I told the nurse to call the funeral home. She did. They said they’d be here in about two hours.
I felt disappointed in myself. I wanted to wash my husband’s body. The ritual would symbolically cleanse his spirit and dissolve the invisible ties between his spirit and this earth. But my energy was leaking fast…like air from a tired balloon.
The nurse asked me for the comfort pack. I took the box from the refrigerator. She checked each item then dumped them into a large, plastic freezer bag, the kind with a zipper on the top. She emptied the morphine syringes into the bag, too. The pale pink liquid slid down the side and spread over the pills for nausea, the pills for constipation, the pills for fevers, the liquid for anxiety, and all the rest. Then she poured blue dish detergent all over the contents, rendering them useless. She put the zippered bag in her traveling case. It would all be burned later.
Just before leaving, the nurse gave me the death certificate. She said the people from the funeral home would need it when they arrived. We said good-bye.
In a previous episode, I told you a little about Pamela, the CNA who had been helping me two mornings a week since December. When she was here last Friday, she pointed out that Dick would often extend his arms as though reaching toward some invisible spirit, a gesture she’d often seen patients at this stage do. I thought of infants and how they reach out like that, too. Pamela asked if I had a small pillow Dick could hold. It might comfort him.
I had something better. I went upstairs to the guest room and took the buttermilk colored teddy bear from the bed. I bought the bear 20 years ago when Logan was born. I spritzed myself with Shalimar, the perfume I’ve been wearing since the 1960s, and held the bear close to me. Then I tucked it into the crook of Dick’s right arm. He gave me Shalimar perfume every year for both my birthday and our anniversary. He liked the fragrance, too. I like to think he could smell the perfume, that it assured him I was right there.
So now, in the wee hours of Tuesday morning after the nurse left, and while Laurie and I waited for the funeral home associates to arrive, I slipped the teddy bear from my husband’s arms. Last Friday, the bear held the fragrance of my perfume. Now, it had the odor of his death. I took the teddy bear into the laundry room and put it to soak with the frankincense and myrrh.
I had turned on the front porch light so the people from the funeral home could find their way. They arrived around 3:00, maybe 3:30. The long, black vehicle was shaped similar to a hearse but seemed smaller, understated, efficient. Both associates, a young man and a young woman, were impeccably dressed in black suits. They wheeled in a gurney.
I directed them to the dining room. The woman asked if my daughter and I wanted to go upstairs. NO. I did not want to leave. Neither did Laurie.
We stayed in the living room. We didn’t say a word. The two funeral associates worked in hushed tones. The woman directed the man’s movements and I imagined the choreographed ritual of some ancient civilization.
I don’t remember how long they were here, maybe half an hour. At some point, they wheeled the gurney into the living room. My husband’s body was a dark colored bag, his face exposed. The bag was draped with a quilt of calico hearts. The woman asked if I wanted my husband’s face covered or not. Covered, I said. I felt that doing otherwise fostered denial, however subtle. The woman nodded and slowly, respectfully, pulled up the quilt.
Laurie and I watched from the porch as Dick’s body was loaded into the back of the vehicle. We watched until the red taillights disappeared down the road.
I turned to my daughter. “I need to sleep.” She agreed, adding, “You don’t have to sleep on the couch.” I managed a shaky smile. It was true. I could sleep in our bed again. In my bed.
Before going upstairs, I walked back into the dinning room where the hospital bed was. Where my husband’s body had been, there was now a red silk rose.
THE FUNERAL
Later that same day, Tuesday, Laurie and Logan came with me to the Samsel Carmon Funeral Home. I had several reasons for choosing them, one being that they offer “green” funerals. In a green funeral, the body of the deceased is not embalmed with toxic chemicals. Instead, essential oils, aromatic sprays, and refrigeration are used to preserve the body until burial.
Green burials are related but different. Think of the green funeral as part 1 and the green burial as part 2. In a green burial, the body can be placed in a cardboard box or wrapped in a shroud and placed directly in the ground – the way it was done for centuries.
For health reasons, there are laws governing where green burials can be held. Here in Connecticut where I live, there is only one cemetery that allows green burials and it’s in Danbury, almost two hours away. Not an option for me. Still, I could have a green funeral.
The other challenge I faced was time. It never occurred to me that I wouldn’t be able to have the calling hours, funeral service, and burial all in the same day. But the funeral home was booked every day that week. If I wanted everything in one day, which is less expensive, and less stressful, than two days, I’d have to wait until the following week. Or get creative – because, as you can imagine, not having the body embalmed means there’s a time frame to be considered.
I was working with funeral director Jason Jamrog. I quickly learned that there are other considerations, too. In the cemetery I had chosen, burials could be held only from 9 a.m. to 2 pm, Monday through Friday, and 9 a.m. to 11:30 a.m. on Saturday.
Jason asked what I thought of having something on Thursday evening: a 6 o’clock gathering for family and friends, a 7 o’clock service. Burial would take place Friday morning at 10 am. Yes. Yes, I liked that.
Then he showed me a binder with pictures and prices of caskets. They ranged from a few hundred for a plain box used for cremation to thousands of dollars for polished hardwood with satin linings. It was what happened next that assured me I had made the right choice in funeral homes.
As you know, Dick was a hiker. He loved being outdoors, particularly on a mountain or in the woods. We were both concerned about climate change, about keeping harmful chemicals off the grass and out of the gardens. Our grandson has an autoimmune disease that doctors say could have been by environmental pollution. Keeping toxic chemicals out of the ground… well, it’s personal.
I chose a modest casket made of some kind of hard cardboard and covered in a pale blue fabric. Yes, cardboard and fabric. I waited to see if Jason would suggest something more…elegant. He did not. Instead, he said that because the casket I had chosen was biodegradable, it would be the closest thing I could get to a green burial. Of course, it wouldn’t be an actual green burial because the cemetery still required a cement vault. Without a vault, as the body and casket decomposed, the ground would settle in a way that could prove unsafe. Still, I liked thinking my simple efforts would help.
Then Jason asked me a lot of questions as though he were filling out Dick’s family tree. He said he would use that information to create a rough draft of an obituary. He emailed it to me that afternoon. In order to meet the deadline for the two local newspapers, I needed to get the draft and a photo back to him by 5 pm.
That’s when I wished I had wordsmithed a few paragraphs for the obituary two weeks ago, or at least two days ago. That’s also when I reminded myself that whatever I added to the draft would be enough, that I had done enough, that I was enough.
THE VIDEO
One of things I did manage to do in the days before Dick died was to gather photographs. In general, we didn’t take a lot of photos of each other. But, in some of the sweepstakes Dick entered he had to provide a photo of himself enjoying the sponsor’s product, or having fun with family, or playing a sport. My favorite was the photo he used to enter a Nantucket Nectar sweepstakes. We were celebrating Logan’s 4th birthday party. Theme: Pirates. Dick was dressed up as Neptune wearing a paper crown of fish and holding a trident I had made from a tree branch wrapped in aluminum foil. I was the Goddess of the Ocean in a blue caftan and a homemade crown of fake sea glass. Logan was a pirate. I smile every time I see that photo. (Yes, Dick won a prize in that sweepstakes. A small cooler. I use it all the time!)
That photo was one of many I emailed to my friend Marsha Browne. She’s a Renaissance woman, talented as both a writer and a videographer. Best of all, she and my husband had been friends for years. I didn’t get all the photos to her until Wednesday. The service was Thursday.
She pulled a miracle. She emailed the file to me early Thursday afternoon, just before she got in her car to make the two-hour drive. We all met at the funeral home at 5 o’clock. Marsha gave Jason a thumb drive with the video. He played it so we could see how it would look on a big screen. Good thing I’d had a private preview. Seeing photos of the joyful times was both comforting and hard.
THE SERVICE
I had asked my friend and colleague Mary Coburn to officiate the service. When I began my work as a Life-Cycle Celebrant, Mary was my mentor. I was always in awe of her skill at crafting a ceremony, and never more so than when she created the funeral service for Dick. She talked about the poverty that marked his childhood, the strong work ethic that came from it, and about how he loved his family.
I told a few stories about Dick. Tim talked about how nervous he was the first time he met Dick and, years later, how Dick questioned Tim’s idea to give an engagement ring to Goofy during a planned proposal at Disney World. Laurie talked about being a teenager, challenging her new stepfather at every turn. Logan talked about how Dick taught him to hike, to wind the grandfather clock, and especially how to treat a lady. If Logan remembers that last lesson, he will be a happy man.
When I arrived at the funeral home that afternoon, I placed Dick’s prize-winning Sam Adams ice bucket on a table by the guest book. The bucket was filled with dozens of long bookmarks, each with a colorful satin ribbon attached. I had written a word on each bookmark. They included: Foundation / Acorn / Intent / Deliver / Legacy / Dream / Remember
Next to the bucket was an invitation for each person to take a bookmark, adding that it would be used in the service.
During the service, I talked about how I used to create the closing ritual for a conference of women writers. It didn’t involve bookmarks. Instead, each writer received a word written on a ribbon. The idea was that the word represented a message of some kind to the writer, that it might take a long time for the word to reveal its meaning. One of those years, the word I received was “Accept.” It didn’t mean much to me then. It means everything to me now.
At the funeral, I asked everyone to look at the words they had chosen when they entered. I said I hoped they would take their word home, put it somewhere where it would be seen now and then. I asked them to think of the word as a message, something to influence their thoughts, inspire their actions.
Then I asked them to share the words they’d chosen. We went around the room quickly with people calling out their words: Laugh / Allow / Patience / Benefit / Destiny / Loyalty / Boundary / Awe / Keepsake / Faith / Calm / Story … and many more.
THE BURIAL
In the cemetery the next morning, my friend Mary Coburn read the poem Sleeping in the Forest by the late Mary Oliver. It’s written from the point of view of someone who loves the outdoors, who goes into the forest, lies down on the ground, feels welcomed by the earth, and goes to sleep. It was the perfect choice.
The simple, heartfelt service included military honors. Dick had served in the Army. The flag that draped the coffin is now on one of the bookshelves in the dining room where I can see it every day.
This last month has taken a toll on me and my family. We’re managing, each in our own way. When someone asks about those last few days, I remember more details. For instance:
As your loved one’s health declines,
Here’s a link to the virtual broadcast the funeral home set up for me.
Because you listen to the podcast, if you would like one of the ribboned bookmarks with a word from the ritual I did at the funeral, send me your address. Email me at: zita@myspousehasdementia.com I’ll cover the postage.
In the meantime, if you know
tell them about the podcast.
If there’s someone you wish knew what you’re going through, and I’m sure there is, ask them to listen to the podcast. It might help that person help you.
Please know this was never a podcast I planned to create. It’s a podcast I feel called to create. I still do. Even though my husband has died, I still have a lot to share with you.
If you want to tell me about the dementia journey you’re on, send an email. The address is <zita@myspousehasdementia.com>. No one sees my email but me.
Finally, when I say take good care of yourself, those words aren’t fluffy. They’re fierce. We need to survive.
