Perspective Makes All The Difference

Story One:

A 5-foot-10-inch, 64-year-old man was admitted for evaluation because of throwing a chair in the dining room of the assisted living dementia facility. He was placed in the wing of the emergency room where security was most protective for staff and other patients: rooms with half-doors locked from the outside and a room with a bed but no other room amenities that could be used to harm the resident or anyone else. All the patients in this wing are watched continuously on cameras by a security guard in a side nook of the hallway.

His wife was called and a message was left on her phone from the assisted living facility of the transport. An hour-and-a-half elapsed before the wife arrived at the emergency room during which time the patient was administered Seroquel to keep him calm.

It was the Friday of the 4th of July weekend, the emergency room was busy, and the staff were spread relatively thin. It was also the weekend where the new doctors began their rotations for the first time.

Seems normal and appropriate, doesn’t it? Now read Story Two.

Story Two:

A 5-foot-10-inch, 64-year-old retired psychologist who has had Alzheimer’s for 18 1/2 years was admitted for evaluation after an incident in a dementia assisted living facility where he lived. He threw a chair in the dining room while having hallucinations. His hallucinations involved seeing children who were being harmed, and no one around him would help him protect the children.

His wife, while the incident and transport to ER were occurring, had unfortunately left her cell phone inside while she enjoyed an hour of gardening which provided her much needed stress relief. Her husband was a few weeks into living in an assisted living facility, and she was beginning to relax now that his direct care was under someone else’s charge.

She went in to check the phones after an hour, and found the message on the answering machine that her husband had been transported to an emergency room all the way across the city, because that hospital was the place where the overseeing physicians of the assisted living facility practiced. She immediately admonished herself for leaving her cell phone inside the house, and she raced to collect her husband’s medicines she had not yet discarded in case she needed them. She then got in the car and raced to the hospital 40 minutes away.

Upon arrival, she was told the location of her husband’s room, and walked down the corridor to see him. She went down a narrow stark hall with no amenities and found the room of her husband. It had a double door, the bottom of which was locked on the outside. She noticed the security officer viewing the rooms on the monitor. No one ushered her there, showed her how to unlock the door, or gave her any news as to her husband’s state.

Once in the room, she found her husband in a hospital gown on a bed that had no pillow, and no sheet or blanket. There was only the bed, and nothing else in the room, nothing on the walls, except a camera … not even a clock. Her husband looked like he was sleeping, but she noticed he did not wake up on her arrival or when spoken to. She knew he was freezing and uncomfortable because he was always cold, a combination of age, dementia, and medication. She had to ask for a sheet, pillow, and blanket for him, and a chair for herself. No matter what landed him there, she was mortified by the treatment he had received so far. Here was the gentlest of men, the most kind-hearted and loving person being treated like a criminal. It was as if he were in a jail cell awaiting trial.

She waited for a long time. Having worked at a local university medical center, she knew this was the absolute worst time to be admitted to the hospital …. a holiday with short staffing and all new doctors to contend with. From her experience, she knew that they had probably drawn blood to check whether there was a medical reason for her husband’s actions in the dining room. She was told after a few hours that they were waiting for tests and a doctor to view him. It ended up being 9 hours before she saw anyone again. She was getting madder and madder by the minute to the point that she was so livid at her husband’s lack of humane treatment that she was at the point of tears, but she knew that would not accomplish anything. She went out to find a nurse and demanded that someone come to the room and inform her why her husband had not had any of his normal medicines, food, or water in the 9 hours that had passed (a medicine sheet is always transported with any patient from a facility).

She and the nurses realized that her husband had been over-medicated (SNOWED) by too much Seroquel (3x his normal dose). He never woke up in that 9-hour period. The wife and husband spent 3 days in that same room because there were no available beds at that time. It took staff a while to realize he was over-medicated and they kept administering the Seroquel on a schedule. During the few hours of consciousness he was given little food or drink, but during this time because so sedated, he could aspirate saliva and mouth fluids with food into his lungs from the lack of a strong swallowing response causing pneumonia. His wife was worried about that possibility. After 5 days, there was a floor bed finally available, and the patient was moved.

At night during the 5-day wait, the wife did go home to get some much needed 4-5 hours of sleep each night, and as she returned in the early morning, not much had changed. She saw an occasional nurse, but no doctor in that time period. She was the only advocate he had! She knew his reasons for being there were his hallucinations, not some underlying disease state, and that the hospitalization would only set him back further mentally and physically, but there was nothing she could say to get them out of the scenario. It was protocol for any behavioral incident. Finally on the floor one of the physicians from the assisted living facility showed up and withdrew all the medications to rid his body of the drugs, and recommended a speech pathology consult to evaluate the patient’s swallowing response. This led to food being served that was pureed and liquids being thickened to enhance the swallow response.

At this point the patient did in fact have pneumonia from being over-medicated. He was put on IV antibiotics. He slowly became less sleepy and began to eat and gain strength over the following days. On the floor he received more humane treatment and the wife met with a social worker to find out their next move. Because there was no medical reason for the agitated behavior, he was not allowed to go back to the assisted living facility.

The social worker advised that they were restricted to behavioral nursing homes. There were only 3 in New York State, and it is very hard to find an opening. They also weren’t necessarily located near to where a patient lived. The social worker did, however, give them a “golden nugget” of information. She said that no matter how long the waiting list for a facility, always ask for an interview in person as soon as you can get one. The wife did that, and within a week of her visit, someone had died and left a slot for this sweet, tormented man. Because a visit and a photo of him were on the application, he was chosen for the bed.

I was the wife in the above stories. I was mortified by the emergency room care no matter what facility or what holiday of the year it was. We don’t just need to do our jobs! We need to remember that each patient is a human being with feelings, and physical and emotional needs no matter what the intake history. This was doubly sad because not only was he ignored as a human being, but I was as well! Staff must have greater empathy for caregivers and the stressed emotional state they are in when staff see them. For this very reason I tell people never to leave your loved-one with dementia in a hospital without an accompanying family member or friend to advocate for them. If you have to go, then go with them and have family members take turns so the primary caregiver can get some needed relief without worry of what is happening while they are away. Another person with them can help them to stay oriented as to why they are there and for how long. Automatically being in a strange place can cause an increase in fear and agitation. If they react with violent behaviors toward staff or other patients, this is documented in their chart and marks your loved-one as unfit for a regular nursing home.

The behavioral nursing home my husband ended up in was Moore’s Place in Newark, NY. Although twice as expensive as a regular nursing home, it was a facility where Jim received the BEST care of anywhere I had witnessed. The staff were well-trained, respectful of the patient, and provided wonderful loving care, so this giant 3 week nightmare ended up with a great placement.

6 thoughts on “Perspective Makes All The Difference”

  1. Makes my heart ache. Losing a loved one to this terrible disease is hard enough without having the “care” system make is worse. I appreciate how hard it must have been to relive this as you wrote it down for us. I like that you chose this photo of the lake. You have seen its relentless eating away of a beloved patch of land, its overpowering of the spirit. At its cruelest, it has been a metaphor for my own husband’s cognitive “erosion.”

    1. Yes, slow but steady. Water is so powerful. When your back is turned it keeps stealing more and more!

      It’s wonderful to have the “photographer of my website” comment, but then you know too well what caregiving is like!

  2. Vicky,
    You’re amazing. Thanks for telling this disturbing account about Jim/Jay. My mother-in-law succumbed to Dementia in her 80’s for several years. My wife and I flew from California to help in moving her and husband from a good private dementia care home in Indiana to a superior center here in Traverse City Michigan.

    It took a village of family and friends over many years to help lovingly deal with the spiraling and emotionally draining dementia disease. Just as Jim and Kip “showed up” in Michigan City, Indiana for Mary and my snowstorm wedding on New Year’s Eve 1977, YOU showed up time and again with and for your husband and Kip’s dad.

    Hope to see you in person sometime in the near future. We have extra room in Traverse City and have New England road trips on our bucket list!

    Ed

    1. I had completely forgotten they came to your wedding! Because it was a holiday weekend I was working and couldn’t come! Thanks for reminding me. You are welcome any time…

  3. Vicky,
    Your husband Jim was the kindest, most gentle, intelligent, caring psychologist I had to work with in the school system. I am afraid that I could substitute my father’s name for Jim as he had a very similar event. I am so sad that these stories are so common. Let us hope that change is coming. Demenitia patients are so easy to be abused and mistreated. My advice is visit the facility frequently, and make sure the staff know that you will be on top of any situation. I am not sure how to handle hospital situations. They seem to have so much power over “treatment protocols.”
    Thank you for sharing,
    Vita

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