I am writing this account because I have had several friends and family, now, who have looked for a way out of terminal disease.
It’s a story about my father, who died a few nights ago, by his own volition.
This is a how-to for all the information we scrambled to find, in a country that forces us into life whether or not we want it. It’s a story about what it looks like to die bravely.
Thank you for the example, dad.
NOTE: This is a long post. I’ll provide sub-headings. My purpose in writing it is to help others who might be in the same situation we were. My family and I had an extremely hard time finding all this information, and we want it to be more available.
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My dad had rapidly-progressing Alzheimer’s. He had lost most of his words, was getting increasingly confused, and was starting to have episodes of delusion. His greatest fear was to end up in a nursing home, and it looked like he was headed there — soon.
About six months ago, he sat us down and told us that he wanted a way out. He was 76 and strong in body; his mother lived to over 100. He was likely to vegetate for decades without another option.
I found his decision extremely brave. Most people slip into dementia without considering the effects on their quality of life and happiness, or the effects on those around them. Dad knew that his entry into a nursing home would consign mom to a life looking after him — as hers had already become, for the last few years. He knew that, as an intellectual person, much of his joy in life would be gone; that his autonomy would be increasingly taken away as he stopped being able to do things for himself; that he would be embarrassed by bathroom accidents and social snafus.
He chose to die on his own terms. I have massive respect for that. It is quality of life, not quantity, that matters.
I spent a lot of time researching possibilities. In this, I have to give huge thanks to several of my friends who generously helped me explore various routes. Here’s what we found:
- Physician-assisted suicide (Death with Dignity) is not available to dementia patients. The person must be a) in sound mind, and b) assessed as being within 6 months of death. HOWEVER, as far as I researched, it looks like Oregon will now provide PAS for qualifying patients even if you don’t live in-state. The registration process takes about 2 weeks to complete, although it can be expedited if you have less than 2 weeks to live.
- Sweden apparently has a more lenient PAS program, but we only looked into it a little. The companies who purport to help you get set up with that option are very expensive and a little sketchy, and dad was too far gone for easy international travel.
- If the person has a clear DNR (do not resuscitate), there are drug combinations that are pretty solid. But procuring them is difficult and possessing them is dangerous, especially if we had to help dad administer them. If we didn’t help, he would have been all alone at the end, which felt awful to imagine.
We ended up settling on VSED — voluntarily stopping eating and drinking.
VSED: THE BASICS
The process of VSED is what it sounds like. At a determined time, the sick person stops ingesting any food or water. They usually take an average of 10–14 days to die; Dad went in 12. You can also do this by only stopping eating, but it takes longer and apparently is considerably more uncomfortable.
There are three phases most participants go through. I’ll describe his process through each in more detail, but here’s the overview.
In the first phase, the person is pretty normal and lucid, still active but becoming more tired. Dad was in this phase for about 6 days.
In the second phase they are increasingly tired and lethargic — so the research says. In actuality, of the two people I’ve seen go through this (my dad and grandmother), both became highly agitated between the second and third phases.
In the third phase, the person slips in and out of a coma. This can last up to 5 days, but Dad was only in this phase for about a day before he died.
We ended up being very glad that we chose VSED. Although at first, we were scared and angry at not being able to find a faster option, this gave us an unexpected opportunity to spend almost two weeks constantly with dad as he died. It was some of the sweetest time in any of our relationships with him.
VSED is uncomfortable, but — as far as I can tell — not actively painful.
PREPARING FOR VSED
One thing we were worried about, in preparing for this process, was the legality. Any form of assisted suicide, particularly when it involves an older person, runs the risk of legal attention. Here are the precautions we took:
- Dad signed off on several dementia-specific VSED consent forms in the presence of a notary.
- Both dad’s psychiatrist and his primary care physician wrote letters supporting his decision.
- We had his DNR posted by the front door, and all these documents printed out and ready.
- We were able — at the end — to employ hospice to come in to make him more comfortable, and to certify death.
This last point needs more explanation.
According to the funeral homes I called, when somebody dies, there are two possible processes. If they die without hospice involved, an ambulance comes out to pick up the body. It is taken to the coroner’s if legally dead, and the family has to answer a lot of questions. I have also seen/been part of that process (I’ve seen a lot of people die, y’all; it’s been a rough few years) and the emergency officials are generally kind, but it’s still a lengthy and emotionally painful process. The funeral home can’t collect the body until it’s been released.
If hospice IS involved, a hospice nurse will come out and check the person’s vitals. They will call the doctor on staff, who will sign off that a death has occurred. Then the funeral home comes and picks the body up. It’s much simpler and less intrusive.
Either way, there is a 48-hour waiting period at the funeral home before cremation can occur. I guess so they know the person won’t wake up?
GETTING HOSPICE INVOLVED
Hospice has a policy that, same as the assisted suicide docs, they will only take on patients who are a few months from death. Most dementia patients do not qualify. This is not a law but it is a policy all across Texas; I don’t know about other states.
We were not able to get hospice involved in the early phases. However — thanks to my husband’s unrelenting research efforts, and the advice of the advocacy organization Compassion and Choices — once dad started entering phase 2 of the process, a hospice organization did come to assess and take him on as a patient, as he was obviously within a short time of death. They had a nurse and medications available that same day.
Getting hospice involved was a godsend. Dad was becoming very agitated and the drugs hospice provided to us (Halidol, Lorazepam, and morphine) went a long way towards keeping him calm. The nurses provided a sense of stability within the chaos. And, of course, they made the post-death process simpler.
One caveat I will give. The hospice took almost 3 hours to come out and pronounce once dad had died. Apparently this was longer than normal because it was a full moon, and more people die on a full moon 😳 but I do think hospice probably takes longer than 911 to to be called in.
Also, hospice does count the amount of medication left after someone dies. So it would probably not be a good idea to try giving the dying person an overdose.
THE DYING PROCESS — PHASE 1
*takes breath* Okay, on to the main event.
Phase 1 of dad’s dying was extremely sweet. I, my mom, and my brother were there almost the whole time; my husband came down for a few days as well. It was some of the most extended and sweetest time we have ever had as a family.
We all took turns being with dad, so he almost never had to be alone. (At one point he joked, “I want to drink some water just so this lasts longer!”) Strangely, having made the decision to die, he was more lucid than we’d seen him in years. He barely stumbled over words and he could tell me stories from his past, and understand every conversation.
I will admit that this brought up some moral confusion for us. Having dad so lucid made it seem strange that we were participating in his dying. He seemed hale in body and sound of mind; how could we condone his decision?
But it was that very decision which had brought back his faculties. We think that he felt much more relaxed, a state which always improved his mind, now that he knew he had a way out of life that was of his choice. To deny him his right to die felt even more morally wrong. He had asked for the option every day for the past several months; he had even written a poem about his desires years before developing dementia (I’ll put it at the bottom). He was clear about his decision, and he wanted to make it while still relatively lucid, since he might not be competent further on. He never tried to access food or water during the process of dying.
Phase 1 was beautiful. Some mornings, our entire family would snuggle together in bed, something that hadn’t happened since I was too young to remember. Other times dad and I would snuggle and he would tell me stories about his childhood and his family. He shared hard truths and withholds, things he’d never said before, about what it was like to have children and how he felt about his life. We talked about trips he’d taken with mom and his decision to become a doctor. We got more touch time, in those few days, than we had in the sum of my entire remembered life before. When my mom or brother were in the room, they were also almost always in physical contact with him. Mom spent hours lying next to him and holding his hand.
As time went on, dad’s energy began to fade. Within a few days walking to the end of the block was a struggle. He became harder to understand as the moisture left his mouth, and his words became whispers.
To keep him comfortable, we used a few methods. I’ll name them then explain them, and I recommend all of them to anyone going through or assisting with the dying process:
- Eye drops
- Lip balm
- Touch
- Anti-anxietals
- Music
- Art books
- Reading to or with him
- Sitting in the garden
- Baths
Eye drops are explanatory. He was able to administer these himself until the end (as long as I took the cap off), and they were really helpful.
Lip balm was also helpful, but he would forget how to administer it and once applied it inside his lips, which made him uncomfortable for several days. I did it for him after that.
Dad had a prescription for Klonopin, an anti-anxietal, which he could take as needed. This was helpful to keep him calm.
Touch was always desirable. Even until the day before death, he would reach out and hold mom’s hand.
Music and art books were a special love of his, and they turned out to be great companions. We listened to many of his favorite classical CDs, and they would help him fall asleep. I also played him songs on guitar which we, and mom, sang together. “Rainbow Connection”, “Hallelujah”, and “Puff the Magic Dragon” were big hits.
Art and photography books gave us something to look at together, even when he wasn’t as able to talk.
We read his favorite author’s stories to him, and read again and again from the book of our shared collected poems. I’ve created a free link to this if anyone wants a copy. We wrote these back and forth to each other for 17 years — more than half my life — and I collated and got them printed just before he started VSED.
One note on the above choices: these were helpful especially because they were his passions. I’d suggest choosing whatever the dying person loved experiencing in daily life that can be enjoyed passively or with a modicum of effort.
As to the garden, Joel, Mom, and I all planted this together during Phase 1. He was able to sit out in it for periods of time and really loved that. It also gave the family something to create together, which was a wonderful idea, because keeping ourselves busy helped us navigate our emotions and get time to talk. Joel and I also went climbing at the local bouldering gym almost every day, for this purpose.
And baths. Baths were the best idea of them all! It turned out that, despite having a giant tub in his bathroom, dad hadn’t taken a bath in decades. They soothed his parched skin and relaxed his bed-bound muscles. We helped him take them every day until the very last one, even when he had to be lifted into the tub. Of course, we did the whole experience — candles, bath bombs, rubber duckies and all.*
*A note on baths. These involve both temperature and elevation changes, which increases the risk of passing out. Especially in Phase 2 (Phase 3 won’t usually be possible for baths), give the person lots of time to acclimatize on getting out — have them sit on the edge of the tub for a while before you help or carry them to bed. We learned this the hard way.
After about 6 days of relative clarity, there was a distinct shift. Dad became more confused, more agitated. He had entered Phase 2.
THE DYING PROCESS — PHASE 2
In this phase, dad became harder to understand. His voice was weak from dehydration and the dementia seemed to speed up, as a hospice nurse told us it might. He wanted autonomy but much of the time, we couldn’t understand what he was asking for. His breathing, when asleep, was characterized by very long pauses between each few breaths.
I discovered that the little moments of agency we could offer him were deeply meaningful. Letting him put in his eye drops by himself. Giving him his violin to try playing, even if there was a chance he could break it. Letting him choose his clothes and when he wanted to wear them, or nothing at all.
I also discovered that I needed to let myself NOT try to understand everything, not judge myself when I missed a request or a need. I learned to say no to things that weren’t safe, like his constant need to get out of bed.
Getting out of bed was the fight of the century, y’all. Phase 2 was also marked by agitation. I read that this can be caused by a lack of oxygen in the blood. Dad was DETERMINED to get out of bed and walk around; but his room was on the third floor, and he would sneak out and then collapse and need to be carried upstairs. Worse, he was larger than either mom or me, so we were scared to have him fall when we couldn’t help. Only my brother was large enough to assist.
This agitation seemed to be made worse by change. New people arriving or a change in physical situation would rile him up for hours.
When we got a hospice bed it only made things worse, because he was able to pull himself out using the bars that were meant to keep him from falling out of bed. I do not recommend those for people with dementia. He climbed out of this and back into his own bed in the middle of the night; luckily I was sleeping in the room and was able to help him re-situate in his own bed, where he slept for the rest of the time. His larger bed seemed comfortable for the amount he wanted to move around, not to mention for the possibility of family snuggles.
We had a couple of sleepless nights and scares with the agitation, until we finally got hospice in.
Hospice gave us medications to keep Dad calm, ones that could dissolve in his mouth or be dissolved in liquid morphine instead of being swallowed. He had become unable to take his own anti-anxietals because he couldn’t swallow them without water. Once we upped the dose of these after the first day, dad became much calmer and seemed more comfortable.
I had mixed feelings about drugging Dad into a stupor. But I realized those were about me, not him. He had chosen to die and had a right to make his last days comfortable. I am, however, grateful that we didn’t have these earlier on; the lucid time was priceless and didn’t seem that uncomfortable for him.
Two days after we started hospice, dad entered Phase 3.
THE DYING PROCESS — PHASE 3
We were told that this phase could last several days. For dad, it only lasted one. He slept more and more, and then soon after his last bath, he lapsed into a coma. By this time he had lost at least 20 lb, and looked like a skeleton of his former self. We kept talking to him and holding his hand, as there is some evidence coma patients can still hear.
Late that day, I was reading in his room (okay I was actually checking Instagram). I had just gotten up to leave when his breathing changed. I called Joel and Mom up, thinking it might be the end.
A few minutes later, dad took his last breath.
THE AFTERMATH.
Hospice took several hours to come. In fact, the flowers my husband sent us as soon as he learned Dad died arrived about 2 hours faster than hospice did, leading him to remark that he should have called the same delivery service to get the body too.
When hospice did come, they were lovely, and quickly confirmed the death with the doctor and the funeral home we’d chosen. The funeral home arrived about an hour and a half later to pick up the body, and they are still holding it in preparation for cremation.
We have been dealing with the aftermath.
Although VSED was overall a good choice — far better than I anticipated, for both relative comfort and time together — the last few days were really hard, and it’s difficult that those are the final memories I have of dad. I am glad that throughout the dying process, I took a lot of notes on our experience together, which I have been reading through to remind me of the better times.
Another questionable choice for us was not telling anyone, except very close friends and family, that dad was going through this process. Thus when he died, everyone — his neighbors, the facility in which he lived, extended family — were all shocked. The fact is, there isn’t much clear information out there about choiceful assisted dying, and we were very scared of legal repercussion or intervention had others known. We also didn’t want dad (or us) overwhelmed with visitors. I think this was overall a fair choice, but it has created some fallout.
Being able to prepare for death in advance gave dad time to put all his affairs in order. Aside from apartment clean out and closing some accounts, he left us very little to do. I’m grateful for this as well.
To close, I’ll put the poem dad wrote me back in 2014. This was a huge comfort for us throughout his dying, because we knew that even in sound mind and body, he had been clear about this decision.
DEMENTIA DILEMMA
Is there a point in life,
I asked my wife,
When comes the season
That haze beclouds your reason?
And the brain fruit gets overripe and soft,
Too many neurons limply getting offed?
“Of course,” she said. And so I wonder,
Does it come like clap of thunder?
Does some tipping point exist,
Chaotic butterfly invoking it from mist?
Does time get out of joint,
Your mortal coil prepared at death to point?
She looked at me with fond and serious eyes,
“These things don’t come as a surprise.
If words you need to seek, if names elude,
It means you may be starting to get stewed.”
Toward the end I don’t want her to suffer
Caring for a veg. She needs a buffer.
There are options. Tell my doc, my friend –
No procrastination at the end.
If my higher intellect I’m losing,
Calm and painless mercy death I’m choosing.
I want DNR, no artificial feeding,
And for sure no respirator I’ll be needing.
Forbidding mourning let my restful passing go,
So some say “breath goes now,” and some say “no.”
I’m glad now I have conquered this decision;
My wife for all her needs will have provision.
This done, my poem ending, now I step outside
To watch the mating birds display with pride.
The sun is gleaming, nature all beteeming.
Will this I want to leave, and her, when time’s for leaving?
