I’m posting an article I wrote after the loss of Brian, it will be one year ago on Wednesday. Brian’s life mattered, Brian mattered and during Dementia Awareness Month it’s important we remember Brian.
It is imperative we look at what transpired during Brians last year, and it highlights so many issues within Long Term care that were present before COVID.
Today there are still many issues and they cannot all be blamed on Covid and in the coming days I will talk about my personal view on many of the issues in Long Term Care, but today is about honoring a man, who in my opinion the system let down.
Let me make it very clear that there were many who crossed paths with Brian who did everything they could, they are incredible people who are caught up in a system that too often stop them from providing the care they could and would if not hindered and buried under bureaucratic policy and procedures that have nothing do to with the human elements of care but are more about operational and $$. So not only was Brian and his family treated unjust manner, so too are the workers.
Again I will tackle that in another blog. But I will say that Covid brought issues to light it is our responsibility as a society to ensure that things that happened to Brian don’t happen to anyone else.
Fentisha has become an amazing friend and someone who supports me and all my flaws and ups and downs with my life with Dementia. I feel incredibly blessed that Brian brought our lives together. The bond created walking through Brians’s journey wit Fentisha shall forever keep us connected in ways that are hard to explain.
So please read and share Brian’s Story, there is too many Brian’s in Canada and I believe globally and we need to keep these stories in the forefront until real change happens.
This story is written and shared with Permission from Brian’s Family
This is Brian’s story, well it’s my perspective on Brian’s story. I first met Brian’s daughter when she reached out to me through my blog, Brian lived here, she did not, she was trying to get help and to understand what was happening to her dad. We talked many times, questions and tests to request the doctor to do, she suspected Dementia but was struggling to get the help and a diagnosis for her dad. She came to town, it was then that I met Brian for the first time. I’m 60, Brian a few years older at almost 65, Brian was struggling, I could see it, but he was still engaging, still had a spark, and a sense of humour, we all had lunch downtown, Brian enjoyed going downtown for coffee/ lunch. But Brian also liked and had for most of his life lived a life in isolation, a lifestyle he chose and was most happy in. ( I believe if we look back in history many of our talented and brilliant lived lives of isolation, likely in large part because it then allowed their creativity to flow, I believe this was likely the case with Brian, he was brilliant, and an extremely talented artist, photographer and craftsman.) Brian and I connected on that first meeting, in a way few would or could understand, he knew I had dementia as well, we had a knowing between us. It wasn’t long after that Brian ended up in the hospital, I went to the hospital, Brian was extremely sick at that point, again his daughter came, she stayed with me, I am only minutes from the hospital. Once Brian started to improve the cracks in the system started to show, Brian was placed in a room with another three people, this is not in his best interest, his meets are now not being met, this is a man who’s life of isolation requires he have that quiet space, which he could not have with others surrounding him, he did fairly well though given the circumstances, unless they were trying to do things he didn’t want, or they didn’t have the time to help him with the things he needed help with. I visited Brian often, we would walk the hallways, I would take him boiled eggs and yogurt. He would always ask me where my car was ask me to help him escape, we would laugh, I loved Brian’s humour, before I would leave I would always tell him to be good, he’d laugh say no, I’d say good, there’s no fun in being good anyways. Finally Brian went home, but this was short lived, again Brian ended up in hospital this time it became apparent Brian was going to need care, and the family started looking at options. Brian’s Dementia was moving at a fairly rapid pace, I took Brian’s daughter to several facilities, the concern that was always at the top of the list was Brian’s absolute need for his own space, his own room, so he could maintain his privacy, and his quiet. Unfortunately Brian ended up in a facility in a four bed unit,( which should be outlawed), it wasn’t long before Brian was struggling, his daughter was continually trying to get them to address the fact that Brians struggles were being created by the environment they had him in, he was purple dotted( this means aggressive and behavioural issues, Brian was not a mean or violent man, Brian was a man who could not and did not function well in an environment where there was constant noise and chatter. Another battle to have Brian moved again, ( it is a known and proven fact that these moves create decline in people), Brian was moved to another faculty, again Brian’s need for privacy and quiet were fought for, he needed to be able to stay in his room, he wanted his meals in his room( this was against policy) so again Brian was subjected to environmental things that caused anxiety, stress, agitation for Brian, nurses trying to trick him by putting pills in his yogurt, as though because of his dementia he wouldn’t know( dementia people are not stupid, they just can’t communicate in the same way anymore), so if they had taken the time to tell Brian they were going to give it to him that way, it may of been better received, Brian should also have been given the right to refuse these medications. Brian still had a great grasp of what was going on around him, he understood, but he wanted his wishes to be upheld and fought back when they were not. He communicated in the only way people heard at this point, and often that was with behaviour. Brian’s family would take him out, he always did well, he continued to struggle in the facility though, forced to be in a dining room of strangers, I still had good visits with Brian, then Brian ended up back in the hospital, this time things did not look like he would recover, Brian had a very explicit health a Care directive, I arrived, I spend time with Brian’s love Ann, and his son, I explained what the process of dying can look like what changes they might see, I spent time talking with his son, who was struggling, But he did and was able to finally say to do what his father wanted. Brian wanted no interventions, the doctor
on came in, I was talking to Brian, asking him, if he understood that by having no interventions like antibiotics etc, he would die, yes he knew that, the doctor said “ he doesn’t know or understand , wow, I couldn’t believe what I had just heard, he then went on to say he wasn’t comfortable and he would continue treatment until Brians doctor ( he was away) returned. This is where education even for doctors becomes so important ( whether the doctor was comfortable or not should have never come into play, Brian had a health Care directive which was know not being upheld). Brian wants me to call his daughter, I do, she assures him she’s on her way. And so the family injures the stress of know having to fight a fight that they shouldn’t have had to, to have his wishes upheld. They wanted him moved to Hospice, that’s not possible either, he has to be returned to the facility ( the family is told they can provide palliative care there so they do not transfer patients to hospice. ( This is a human rights issue). Again more stress for the family, Brian is transported back to the facility
, Brian’s daughter again staying with me to be with her dad, I get a message from Brians daughter she is distraught, I go to the facility, she is filming her dad writhing in so much pain and discomfort, unable to get help, I ask have you called the nurse, she said I keep asking they keep telling me she’s on her break., there is a young care worker who has been brought in who was supposed to extra hands, he is pacing up and down the hall and standing in the dining room, ( if he could do nothing to assist with Brian proper training and mentoring would have seen him spent time with other patients who could use some one on one time, instead we hear another staff member yell at another resident ( to shut up, I don’t want to listen to you today), ok I’m upset, I worked in care for years this kind of stuff should not be happening. ( what happened to the days when nurses came off their breaks when needed then resumed them once situations were looked after, or nurses from another floor came and stepped in so people were looked after. This was outrageous, finally after bearing witness to Brian’s suffer as long as we could, we marched down to the nurses station, found the nurse back from break doing paperwork ( perhaps the first stop should have been Brian’s room), we asked that the doctor be called, we were told they would let us know once they’d done it( in other words we were being dismissed), no not this time, insisting the doctor be called and that the daughter speak to the doctor, finally Brians pain was being addressed. However in the coming days, it was exhausting for the family trying and fighting to ensure meds were given on time, I sat at one point for 5 1/2 hours not one care staff came in the room to check on Brian, the nurse came, gave him his pain meds and left, another family member was there for eight hours no care staff, one day his meds were 1/12 hours late, when the nurse was questioned the short reply was , were short staffed we will get to things when we get to them. Sorry Brian is not a thing he his human being at the end stage if life. Yes there were staff who tried, and who were kind and caring, and this isn’t really about the staff as much as it is about a system so broken, that the care is gone, taking care of a person at all stages gone, and you can see staff are exhausted burnt out, wanting to a job, that policy and procedures prohibit them from doing. This is about a man who deserved better from a system he worked and paid into his whole life. This is about a family who shouldn’t have to endure the added stress of fighting a broken system at a time that is already unbearably difficult. And yes Brian’s journey is about me, I live with Dementia, and watching and witnessing all this has left me traumatized, In the weeks since Brian passed, I have said over and over again, it is this very thing that I witnessed that causes me to say I’m going to go buy and stock pile illegal drugs, so I don’t have to endure any of this, I halos have a very explicit health care directive, but I just witnessed one not being honoured, I no longer feel like I can rest assured my wishes will be upheld. I worked in care and dementia care before my diagnosis I was proud of my career, it was an honour to be with someone on their final journey, it was their final home, they are no more than warehouses know, it’s devasting. I am know terrified. I’m glad Brian’s family fought so hard so he could finally have his peaceful passing, I know he looks down proud of them. I will always remember Brian for his humour, that he shared with me, and for him shining the light on something so perhaps others won’t have to endure the same. Brian I will continue to advocate for all living with Dementia until I too have no voice.
About the Author
Christine Thelker worked in Dementia Care until Diagnosed with Early Onset Dementia at age 55, she risides in Vernon BC, she is a board member of Dementia Alliance International, a member of Dementia Advocacy Canada
She has spoken at Dementia International Conference in Chicago,
the United Nations in New York, and works at advocating for improvements to Dementia Care World Wide.