For those of you who know me, you will recall me constantly saying that hospitals are not places for people living with dementia. If we can avoid hospitals with good lifestyle and health choices, fantastic – but sometimes we really need to be there with and for our loved ones.
Remembering that there are over 100 manifestations of dementia and that every person living with dementia experiences things differently, I say this with the utmost grace and respect – hospital workers (and I was one of them) have limited knowledge of what living with dementia REALLY is.
From my latest venture into the hospital environment, and despite hearing of ongoing staff education and advertising that hospitals are now becoming dementia friendly, not much has changed in the way someone living with dementia is perceived.
Please note that I am not saying that the beautiful people attending to my loved one were not kind, well-meaning, and trying to do their best in a very difficult critical circumstance. They were.
What I’m saying here is can we please stop concentrating on and blaming the diagnosis of Dementia when there is so much else going on in this environment?
Here’s my story….
My beautiful friend who was living well with moderate to advanced dementia was normally conversant, mobile, had a sense of humour; and although they had a diagnosis of dementia, their general health and well-being was remarkably good. My friends spirit was strong, and they had a good sense of who they were in our world. They were aware of their dementia and the limitations that it caused them most of the time. The biggest thing with my friend was that the triggers to bathe, nourish themselves and handle money were marred. Also, their concept of depth perception and balance was a little bit off.
Recently my friend experienced a fall. Unfortunately, this caused a fracture of the neck of femur, commonly known as a fractured hip.
When admitted to hospital, my friend was in incredible pain and delirious with it. This delirium, even though somewhat managed with some pain medication, was also seen as their “symptoms of dementia”, and even though my friend had never “displayed” the “behaviours” that staff were now experiencing as being part of their dementia previous to the admission, such as hallucinations, calling out, swearing, becoming aggressive with staff and general agitation, the general consensus was that these “behaviours” were a part of the dementia.
On top of this, my friend was not hydrated well prior to the admission because of the forgetfulness that they experienced in maintaining self-hydration, therefore increasing the delirium and possibly, their pain.
The other issue was that my friend had no immediate family or guardian that the hospital could call on to sign papers for surgical intervention; prolonging pain, delirium, dehydration and now postponing surgical intervention until papers were signed.
Moving forward, papers were finally signed, the operation was carried out and my friend was returned to the general orthopaedics ward – into a room that was initially not monitored, leaving my friend in their post-operative state (and probably worse state of delirium) to remove their catheter and intravenous fluid that was sustaining them. Again, the dementia was blamed for this – as well as some acknowledgement of “postoperative delirium”.
It was at this time that my friend said to me that they were not going to make it, this was the end.
In my thoughts, these words meant my spirit is broken, no one is listening
More pain management medication was introduced, and then of course came the loss of swallow reflex due to the sedative effects of medication, and the sign for “nil by mouth” to be hung on their door, increasing the dehydrated state, and subsequent increased delirium and now also a heavily sedated person.
Luckily, my friend’s spirit was incredibly strong – their condition improved and their ability to swallow therefore returned, so much that they were eating and drinking well… but their cognition was nowhere near close to what it was prior to their admission, and their capacity for self preservation was non-existent, leading to decline once again.
At this stage, my friend was not in a good way, and comfort measures were introduced to enable them to move gracefully into end of life.
The hospital commenced making plans for my friend to return home.
In a standard cognitive environment, such as in a person without dementia – returning home would not have been considered at this stage. The person was not cognisant to their normal way of being, their mobility was impaired – actually non existent, and their was no rehabilitative process in place.
In other words, there was no hope for this person to return to their former way of being.
My point is that I am not looking at the way that the person was treated medically, as this was accomplished with the utmost professionalism, respect and dignity; but the lack of knowing who the person was (the person’s spirit) prior to their admission to hospital and not acknowledging concerns by the people supporting them expressing that the “behaviour” was not normal for them markedly prolonged the amount of time taken for the comfort, treatment and rehabilitation of the person for a medical issue, and gave them no hope of returning to their prior way of being, just because of their dementia.
Please, if you are advocating for a person living with dementia and the “behaviour” that your loved one is “displaying” is not normal for their own personal experiences of living with dementia, speak up! And keep doing so until someone listens. It may be the point of difference in what treatments will be administered, and also enable prompt interventions for comfort and peace if this is what is needed.
And humbly, all I ask of the health care professionals is – If you are working with a person living with dementia in a way that is supporting their health and wellbeing, please work not only with the person living with dementia, but with families and loved ones to explore what is REALLY the persons own individual way of being with their dementia – LOOK FURTHER than the diagnosis – look at the whole person and who they are…….
Please don’t blame the dementia.
With much love, Bianca
P.S. In my next blog, I’m going to give you some hints on how to support a loved one living with dementia in a hospital environment.
P.P.S – Just in case you were wondering….my “inverted commas” above mean that these words are general phrases used regarding a person living with dementia and what I prefer to call expressions of unmet needs
I am very happy to support you in any way possible to enable the wellbeing of people living with dementia in hospital or at home. Please contact me for any queries.
If you have a friend or relative who is working their way through a medical or nursing degree, please share this article with them. Sharing empowers knowledge of peoples true stories. And from this, there may be a better understanding that we can look past the diagnosis of Dementia and truly see the person for who they are – looking into the true essence of that person.