Last week, a friend of mine, Heidi, took her husband home to die.
I first met Heidi a few years ago when she took a fitness class. I happened to be the instructor. As Heidi tells it, she hated the class but loved me. She says she loves me more now that I’m not telling her to do squats.
Her husband, John, is in his late 60’s. He was diagnosed with Alzheimer’s about five years ago and then with cancer in the spring. Heidi was taking care of him in their home until a few months back when John fell down the stairs.
She was forced to call 9-1-1 when she found him. They hauled him to one hospital and then (for some reason neither Heidi or I understand) to another one. They loaded him up with IV antibiotics to treat a urinary tract infection. The social worker at the hospital recommended that John be placed in a nursing home for “rehab,” and Heidi hesitantly agreed.
It was only a few days into his stay at the nursing home when Heidi received a call that John was back at the emergency room. She rushed to the hospital to find John alone in a treatment room, terrified, with a sling on his arm. He had somehow fallen out of bed and broken his arm. She tried to comfort him, but he seemed apprehensive of her. It was the first time he didn’t recognize his wife.
The emergency room doctors performed what Heidi called a “ridiculously extreme” number of tests. They gave Heidi a laundry list of what was wrong with John. Of course, they proposed some solutions. Heidi was smart enough to know that these weren’t permanent solutions, and probably weren’t even temporary solutions. All of the proposed treatments carried their own negative consequences. A family member asked if a pacemaker might be an option for John’s failing heart. Heidi knew he wouldn’t survive a surgery like that, but when she told someone else this, they said she shouldn’t give up.
The atmosphere at the hospital was chaotic and agitated John. Heidi wanted him out of there, but he was admitted for a few nights. A few nurses mentioned that he was being “uncooperative” and hoped that maybe Heidi could have a talk with him. His Alzheimer’s had progressed to the point that he didn’t say much, but when something came out of his mouth, it was usually “Goddammit!” or “Holy shit!” He had a roommate who was (justifiable) annoyed with John’s outbursts when they kept him up at night.
“He’s not uncooperative,” Heidi ranted. “He’s not being a jerk…he has Alzheimer’s.”
After a few days at the hospital, he was discharged to a nursing home. This time he went to a different nursing home that was “better equipped” to meet his needs, according to the hospital social worker. Heidi thought the new nursing home was cleaner and found the staff to be more professional. However, it was also about 45 minutes from her home. She settled into a routine that included an hour and a half in the car each day.
She told the staff that she knew John was nearing the end of life. She stressed that he had a “Do Not Resuscitate” order and she wanted his comfort to be the priority. She told the director of nursing about how stressful the last hospital stay had been for both of them and how she felt it had made his situation worse rather than better, anyway. The staff was understanding and empathetic.
Yet, an ambulance was called for John one morning before Heidi arrived. The nursing home staff had wondered if he had experienced a stroke. Once again, she arrived at the hospital to find John alone in a treatment room. He was trying to get up on his own. Heidi says if she hadn’t arrived when she did he would’ve ended up flat on the floor “like a pancake.” After a multitude of tests, they decided that John had not had a stroke.
Heidi called me that evening, and I asked her something I should have asked her months earlier.
“Have you considered calling hospice?” I asked.
She said that someone told her that hospice wasn’t an option for a person living in a nursing home. I asked her who told her this, and she told me that she couldn’t remember but thought it was someone at the nursing home. I promised her that hospices do serve individuals in nursing homes. She made a couple of phone calls the next day.
With the assistance of hospice, John was eventually transported home from the hospital rather than back to the nursing home. Heidi hadn’t realize that going home with support from hospice would be an option, so she was ecstatic.
“I’m like Dorothy from the Wizard of Oz,” Heidi told me. “There’s no place like home.”
She asked me why no one had told her to call hospice sooner. I explained that John had been hopping from doctor to doctor, from hospital to hospital, from nursing home to nursing home, and when that happens sometimes medical professionals assume someone else will have the “hospice talk” with a patient and their family.
As for why I didn’t say anything to her sooner….I assumed someone else would. I thought it wasn’t my role. I didn’t know how to bring it up. Really, though, I just dropped the ball.
John’s at home now. Nurses come by, but he doesn’t see a doctor anymore. Heidi is okay with that. There are no more medical tests. There are no more annoyed hospital roommates. Hospice even sends a volunteer twice a week so that Heidi can go out to eat with her friends. The volunteer even does the dishes while she is gone. If there’s a crisis, Heidi calls hospice rather than 9-1-1. She feels guilty that she calls so much.
John spends most of his time sleeping in the hospital bed that hospice delivered to the house. After much discussion, the bed was placed in the living room where John can look out the sliding glass doors into the backyard. Heidi sleeps in a recliner next to the hospital bed. The bed is angled so he can see the leaves as they change colors. No one is sure whether or not he is actually able to see the leaves, but Heidi doesn’t like idea of him looking at a white wall and ceiling on the rare occasion when his eyes are open.
Heidi tries to readjust him every few hours so he doesn’t get pressure sores, but she’s noticing his skin is getting thinner and more fragile. He seems to wake up in a panic sometimes, but he usually calms down quickly. Eating has become challenging. She puts pureed food in his mouth, but he’s forgotten how to swallow. The hospice nurse taught her a few tricks, but they don’t work anymore. A family member keeps mentioning a feeding tube, but Heidi won’t consider it. The hospice nurse has told her that a feeding tube would only make John less comfortable. Heidi has no idea if John is in pain, but she gives him pain meds just in case. He’d never be able to tell her if he was hurting.
In hospice, the term “actively dying” is used to describe a person in their last 24 to 72 hours of life. Heidi is told that John isn’t there yet. She feels like his work here is done, and she knows that he wouldn’t want to linger like this. He would hate that her life is on hold while he’s dying. She feels like he’s not living, but he’s still here anyway. She knows she’ll feel relief when he passes, but she doesn’t know if that will be the overwhelming emotion. Maybe it’ll be sadness. Or anger. Or denial. Perhaps they will all be mixed together and she’ll have no idea what she is feeling, but she knows relief will be mixed in there somewhere.
“I know people who have lost their husbands when they still had little kids, so I can’t complain,” she tells me. “We’ve had a pretty good run.”
In one breath, she tells me that she’s ready for him to go. In the next breath, she says that she’ll never be ready for him to go. Then she tells me that he’s already gone.
That’s what Alzheimer’s does.
3 thoughts on “Taking John Home to Die in Dementialand”
Reblogged this on North Van Caregivers and commented:
A very real and poignant piece that acknowledges and honours the many emotions, decision-making processes, and challenges of a caregiver who is supporting her husband. With dementia care and end-of-life care, I have so much respect for the intimate knowledge of their family member or friend that caregivers bring to the whole process. -Karyn
Beautifully written , it is where I am now
Thank you for your kind words. I’m sorry to hear this is where you are at.
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