My husband William was diagnosed February 5, 2016 with frontal temporal lobe dementia at age 67. He was still working up to his retirement, April 30, 2016.
The disease was aggressive. January 1, 2019 he was admitted to a health care centre in Hamilton, Ontario. I could not look after him anymore as he required 24-hour care. When he was admitted he was placed in a cell. Pictures can be provided to show the conditions he was in for three days with only an adult diaper on, etc. I demanded he be moved as he was not a criminal. He was moved to a psychiatric ward. Here he needed one on one care, due to the psychotic patients on that ward. He was administered Haloperidol (Haldol) regularly for so-called agitation. It is my understanding the law for a chemical restraint is that it can only be given if patient is of immediate danger of harm to self or others.
By the end of March 2019, they transferred him to a senior mental health unit for dementia patients. By April 24, 2019, after receiving copies of medications he was receiving, I demanded they stop administering Haldol to him. They were giving this to him for “resisting”. In July 2019, I did research on the two other anti-psychotic medications they were also giving him: Seroquel and Risperidone. Both are not recommended for dementia patients and are being used off-label. The medications do nothing for these patients, other than to severely sedate them.
I asked the doctor to wean him off the medications. The doctor abruptly stopped the Seroquel causing my husband to suffer a week of withdrawal. I asked the doctor why he went against all recommended protocols of weaning from this drug and his response was ” you said you wanted him off it”. Any incidents caused by my husband was on me. That was one of many disagreements with the doctor and staff.
My husband was able to use the toilet if someone took him. He was the only patient on that unit made to wear a onesie, which gave him no choice other than to go to the bathroom in his diaper. Too many times to list, my husband was found strapped in wheelchair with pants so soaked and filled with feces and urine, that it was forming puddles under the chair. My husband suffered numerous skin tears from staff using extreme force during his care. I documented every injury with photos. I also recorded all my phone calls with doctors and staff.
August 31, 2019 there was an incident of fighting between my husband and a co-patient. This unit is set up pod style so staff have eyes on all four hallways. My husband is seen on hallway video going into another patients room. No camera is in the room. They were in there for five minutes. No one knows who started it. Both are seen coming out into the hallway hitting each other. This went on for another seven minutes. Both patients suffered injuries. For a total of twelve minutes no one stopped it.
September 10, 2019, I received a call from the unit manager to come for a safety meeting. Upon arriving I find my husband locked in the hallway where his room is. The meeting was about the August 31, incident. They said they needed to keep everyone safe. Their idea was to keep my husband isolated locked in the hallway. He had access to his room only if they left his door unlocked from the hallway. The doors allow a patient to open the door from inside their room if they can figure it out but require a nurse to use a pass to unlock the door from the hallway. There are no chairs – nothing in the hallway. The only human contact my husband had was during care, when the staff fed him or when family or I visited. This isolation was 24/7 and this lasted for 26 weeks. Yes, 26 weeks. From September 10, 2019 until February 10, 2020. The care centre released him from isolation after being notified of my human rights complaint.
Isolation is a type of restraint. The hospital staff argued with me that the locked hallway he was in was not an “isolation room”. I pointed out the law does not stipulate the square footage needed to qualify for an isolation room. Isolation as a restraint is to be a last resort when a person is deemed to be an immediate risk of harm to self or others. He fell once, from having nowhere to sit, and injured his elbow. My husband’s condition declined rapidly due to no stimulation or human contact. He was like a mouse in a glass jar. He could only walk up and down a hallway. He was found sleeping on the hall floor when we arrived a couple times because his room door was locked.
March 16, 2020 my son visited his Dad and had brought him large milkshake. He drank it all, while walking around the unit with my son.
March 17, 2020 I was informed there could be no visitors due to COVID-19. Every day that week I called the unit, or they called me telling me how well husband was doing, eating, drinking walking around. But on March 22, 2020 I got a call telling me they called in a doctor as they had trouble waking my husband up. The facility did blood work, and found my husband was severely dehydrated. The staff asked for my permission to send my husband to Emergency Room. I agreed. The Emergency Room started an intravenous line to re-hydrate him. At this time, we still could not see him due to COVID-19, unless he was designated a palliative care patient. Needless to say, I wanted to see him.
March 24, 2020, I received another call from the doctor, he says I need to consider end of life care for my husband because of his dementia. My response was: “As long as he could still walk, sit up, etc., I didn’t care if he had to be fed pureed food, and I could deal with that.”
My husband had a medical directive that stated he was not to be starved to death. They had a copy of it. From March 24, 2020 to March 31, 2020, when he died, the facility did not honour his directive. I have over 200 recorded calls. I have videos. I have dozens of pictures. Their neglect, I feel, directly led to my husband’s death. I am a pensioner and do not have funds for a lawyer. If you would like further information, pictures, recorded calls, please let me know.
During the calls with doctors one of them asked: “Did I expect them to treat him like they would a 50 year old without dementia?”. Another doctor stated: ” If he cannot feed himself or get his own water, we don’t have the staff to do it.”
I know I am leaving out tons of information. I am just trying to give you a bit of an idea of what happened to my husband and my family. No, we were not able to be there when he died. I begged to see him. They allowed it only after he passed.
Thank you for all you do.
Diane L.