Suicide is a Real Risk with Alzheimer’s and Dementia

Risk of suicide with Alzheimer's and dementia

A colleague of mine, the same man who writes the Casual Fridays series has many stories about his time working in Memory Care. With over 15 years working in multiple positions within the elder care industry he has seen and experienced amazing things. He now works for a non-profit organization which focuses on assisting those connected with Alzheimer’s disease. He is a passionate, personable man, and a great writer. He typically writes focusing on the positive aspects of the disease. Although Alzheimer’s is not a positive disease by any means, however there are ways of looking at some aspects in a positive light. His stories are real. Unfiltered, they show a side of dementia that few see. The following story is incredibly powerful. For many it may be difficult to read. It was for me. You can learn a lot about dementia from this story. If you can find an understanding about the disease, and the actions of the people in the story, there is huge value in these words.

-Carlos Barrios, Founder of Endear for ALzheimer’s

Suicide and Dementia

I have dealt with death many times working in long-term care. But only once have I dealt with suicide. I was working in an Alzheimer’s community in Portland around 2007. We received a placement inquiry about a man who was temporarily staying in a geriatric psychiatry unit. His name was John, and he was in his mid-sixties. He had been living at home with his wife with no apparent problems. One night, the wife was startled awake by John, with his hands around her neck, trying to choke her. She was able to fight him off and call the police. John told the policeman that extraterrestrials had kidnapped his wife and put an imposter in her place. So he explained that he hadn’t really assaulted his wife, he was merely trying to dispose of the alien counterfeit wife. With that explanation, John was placed in a geri-psych unit and assessed. He received a diagnosis: DUO: Dementia of Unknown Origin.

Our management team discussed the possibility of admitting this man. I was against it for a couple of reasons. First, the violent behavior and paranoid delusions could be very problematic in a residential community of frail elders. Second, he was quite a bit younger than most of our residents, so I felt that he might have a hard time relating to the other people in the community. At the time, our census was low, and so I was overruled, and John was admitted to the third floor.

John was thin, very quiet and serious. He had sunken eyes and rarely smiled. He had an easy chair in his room, and he would spend most of his days sitting and looking out the window. I was the Life Enrichment Director, and tried to convince him to come to some of the activities, but he was not interested at all. John did like to go down to sit on the patio on the first floor. It was Spring, and the weather was getting warmer, and he would just sit and look up at the sky. I always felt uncomfortable around John. Although he was taking anti-psychotic medication, he definitely seemed disturbed. Some quiet people are relaxing and enjoyable to be around. But John’s silence was tense and brooding, and I felt like he was full of rage just under the surface.

John was a very intelligent man. He was highly educated and had spent his work years as an architect. Sometimes, I could engage him in a conversation about Frank Llloyd Wright or Corbusier, but for the most part, John was not interested in conversation or fitting in. He just wanted out. After a few days, John started making phone calls to his attorney. He would spend time in the nurse’s station, speaking in cryptically low tones and taking notes. He told me that he felt unjustly imprisoned in this facility, and he was going to legally contest his wife’s Power of Attorney. So for the next couple of weeks, John would either be sitting in his chair in his room, sitting on the patio, or on the phone to his lawyer.

One afternoon, a female caregiver who was getting ready to go on her break, offered to take John for a walk down the street. John agreed and the two of them went downstairs on the elevator together. About thirty minutes later, the elevator door opened and there was the female caregiver, looking a little shell shocked, with John, who was being escorted by a beefy caregiver named Jose. Apparently, when John reached the street, he made a break for it, and it took two aids to restrain him and bring him back. Shortly after this incident, he was going down on the elevator with another female aid, this time to sit on the patio, and he lunged at her, trying to put his hands around her neck. This was the last straw, and we called a care conference to tell John and his wife that we were giving him a thirty-day notice to move out. His wife was visibly upset, but John seemed impassive and did not show any emotion about the news.

The next week or so was quiet, with John continuing to talk to his lawyer in the nurse’s station and then sitting for long periods in his room. I can remember John calling me by name one morning as I was walking to my office. He had never done that before, and I took it as a good sign, as John seemed in a fairly good mood. It was a beautiful sunny day in late May. About ten thirty that morning, I was on the second floor helping to exercise some of the late stage residents, when Katherine, our community relations director stepped off the elevator breathless and said, “We can’t find John.” My first thought was that he somehow made it downstairs and walked off down the street, so I was not particularly alarmed. We arrived on the third floor and I walked the hallway and started looking systematically in each resident room I came to. Katherine went to John’s room. She came running out a minute later, ashen, and said, “He went out the window!” We opened the stairwell and flew down the steps to the ground floor parking lot. We came around the corner and lying face down in a pool of blood was John. He must have dived out the window as his skull was severely cracked with blood dripping profusely from his nose. His right arm was completely broken off in between the wrist and the elbow, and his forearm was lying next to his body, facing the opposite way it should have been, jagged bones sticking out from bloody torn flesh and muscle. John was completely still. I knelt down and felt his neck. Katherine whispered, “Is he okay?” I looked up and said, “He’s dead.” At this point, Linda, the administrator was standing next to us and became hysterical, calling on Jesus to help us. I stayed with John’s body and became very calm, keeping my hand on his shoulder and waiting for the emergency services to arrive. I was not disgusted or revolted by the gore of the scene. Rather, I was protective of the space in a strange way, thinking that here was a place where this man’s soul left his body. It felt to me like sacred space. After a few minutes, the paramedics arrived. I stepped back as they examined him and quickly realized that there was nothing they could do. Shortly thereafter, a police officer arrived in the parking lot and began asking me questions. He asked if the man had been distraught, to which I answered no. Then he asked if John had been alone in the room. I said: “as far as I know”. The policeman was trying to determine if this was indeed a suicide or a homicide.

It turns out that, upon inspection of his room, John had left a suicide note, indicating that since he was moving to another locked facility, he had no idea if he would be on an upper or lower floor. His lawyer had told him that morning that John had no recourse in contesting his wife’s guardianship. Therefore, with a grim future ahead, and a third floor window he managed to jimmy open, he decided that this was his opportunity to take his destiny into his own hands. So he did.

The staff was shocked and saddened by this incident. We are used to death in a long-term care community, but not violent and grisly death. I can remember several group hugs and tears that day. After his body was taken away that afternoon, all that remained was a dark stain in the parking lot. We went on with our routine, very careful to shield the residents from the news or the energy that anything was wrong. And truthfully, doing activities that day was very therapeutic for me, because I didn’t have to focus on what I just experienced. It was when I tried to go to sleep that night that I kept seeing the broken off arm and the blood gushing from John’s nose. Thankfully, this slight case of PTSD went away after a day, and we went back to normal. Well, as normal as an Alzheimer’s facility can get. A couple of days later, John’s wife showed up to collect his belongings. When I saw her in the lobby, it was obvious that she had been crying. She looked disheveled and shattered, like I could just blow her down with a slight puff of air. One of the aids handed her the last box of his effects, and I walked out to the car with her. I hugged her and said, “You take care of you.” She couldn’t speak at that point and she just nodded and got into her car. I walked back to the lobby with a heavy heart. I never saw her again.

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5 Responses to “Suicide is a Real Risk with Alzheimer’s and Dementia”

  1. Jeanne says:

    I’m sorry for your loss…

    A part of me admires John; he took matters into his own hands. He knew what he wanted, and in a last, sentient effort, removed himself.

    I would have done the same thing, in his position. I would want to spare my loved ones and I would want to go out on my own terms.

    Suicide may be a real risk with dementia patients, but think about it; it makes sense, doesn’t it? It does to me. So why take that decision away from a person who still has some control of their faculties? That person knows he will soon not have that level of control.

    I keep thinking about my mom. She was diagnosed three years ago with dementia. Early on, while still cognizant, she talked about “offing” herself. The thought of the ultimate consequences were abhorrent to her.

    And most recently, she mentioned it again. But now (somewhat sadly), I think she cannot hold that thought long enough to plan it.

    I love her so. I know she would not want to be reduced to madness, completely dependent on others. Yet here we are.

    I shall plan for my own latter years accordingly. The title of this piece — “Suicide is a Real Risk with Alzheimer’s and Dementia” feels like both a “Duh!” and a “Let it run its course” to me.

    Let me choose how I leave. PLEASE do not reduce me to a husk of myself; do not leave me to be less than an infant,to be unable to speak, walk, eat, relate, recognize or remember anything I see, taste, hear, smell or feel.

    Thanks for this heart-felt article.

    Jeanne

    • admin says:

      Jeanne,

      I can understand your position on this subject. While I don’t want to get into a discussion on assisted suicide, I think that you have made some very good points in your comment.

      It is important to remember that many people with dementia are delusional and have hallucinations. While this is not pleasant, it is possible that a suicidal dementia patient is reacting to the delusions they experience because they think that they are real. When a healthy person is suicidal they are reacting to feelings caused by depression or anxiety, and often are related to a real occurrences or situations they are experiencing in life. Many people with dementia experience depression and anxiety, and typically hold a great deal of inner angst. I can see why someone would want to commit suicide if they were experiencing intense symptoms of dementia. It is difficult to understand the thought process of someone with dementia.

      Jeanne, as you mentioned, you would want to have the chance to make that decision before you lost the ability to do so consciously. As dementia progresses the mind deteriorates and in some people behaviors and temperament can change(very dependent on the type of dementia). Dementia patients also experience sensory and motor coordination loss. This is not necessarily a bad thing. I knew a man who had Alzheimer’s and was in the end-stages of renal cancer. The final stages of renal cancer are extremely painful. This man was fully aware that he had Alzheimer’s and also aware that he had renal cancer and the symptoms and pain that accompany that type of cancer. He was in a far enough stage of Alzheimer’s where he felt no pain from his cancer. He knew he had it, he knew that he should be feeling pain, but he wasn’t. He eventually died of the cancer in no pain. My point is that if someone with dementia progresses past a period of delusions and anger, they may be more at peace. As you know, even though someone has dementia you can still have positive rewarding interactions with them.

      On a different note, in response to your wanting to choose how you leave, I would suggest setting up some advanced medical directives for you and the other adults in your family. Many people only think of putting a DNR directive in place, however you can get incredibly detailed in an advanced directive order, which will allow you to dictate what actions (or inactions) should happen during different medical situations. This is important because when you erect these documents your mental and physical health are intact. An attorney can assist you in setting up these documents.

      In John’s case he was not psychologically healthy. While he did still have enough cognizance to perform in many ways as he once did, he was not in a state where he was healthy enough to make his own decisions. When a person without dementia is suicidal they are in a temporary state where their thought process is affecting their ability to reason. They too are not mentally healthy enough to make the decision of suicide. I would place an exception however, for people with terminal illnesses.

      These are just my thoughts and opinions Jeanne, and I fully respect your opinion and thank you for sharing your comment and your story about your mother.

      Sincerely,

      Carlos Barrios, Founder of Endear for Alzheimer’s

  2. Marshall Gordon says:

    “He was in a far enough stage of Alzheimer’s where he felt no pain from his cancer. He knew he had it, he knew that he should be feeling pain, but he wasn’t. He eventually died of the cancer in no pain. My point is that if someone with dementia progresses past a period of delusions and anger, they may be more at peace. As you know, even though someone has dementia you can still have positive rewarding interactions with them.”

    Total BS.

    • admin says:

      Marshall,

      I am sorry that you feel that way. This is a true story that an associate of mine told me. Your comment leads me to believe that you have had some bad experiences with a loved one with dementia. I hope that you can find peace with your troubles.

      -Carlos Barrios, Founder of Endear for Alzheimer’s.

  3. donna says:

    Why is suicide labeled as a “risk” in this article? I would think it would be welcomed by many patients since assisted suicide is not an option. I would hope I have the courage to commit it if ever I am diagnosed with any form of dementia. I would not want to become that, a shell without me inside, I would not want to burden the cost to myself or my family for my care since in reality there is no treatment, just containment.

    I would not let my dog suffer like people are being forced to suffer and slide into nothingness. That is cruel, and another example of medical intervention prolonging a life with no hope and quality of living. since we all must die, let us do it with dignity at the time and place of our choosing.

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