A Fortnight in the RAH (part 2)

Our 3rd time in the RAH and it is business as usual for us. Bob continues to have a nurse special following him 24 hours/7 days per week. Bob is more agitated this time round and the tasks we performed last time are now too difficult to manage. Showering Bob is almost impossible. Every time we would steer him into the bathroom he would walk out (and sometimes naked). This is embarrassing for all concerned as staff race to find things to cover him up. Unfortunately he will no longer just put clothes on when asked. The dynamic has changed and Bob is now in control.

What I mean by this is that if for example we try to take his shoes off, he may hit, become agitated or walk off. Bob dictates what is happening next and the control we had before is no more. This means we can no longer shower Bob everyday – we do it when we see a window of opportunity. If he is calm and starts to unbutton his pajama shirt we dive for the towel and toiletries bag. The little showering routines no longer work. I used to get Bob to clean his teeth and straight after have his shower.  Now I am lucky if I can clean his teeth at all.

This means we ‘have a new normal’. The hygiene and dressing standards we  have steadfastly maintained can no longer be reached. Bob may be smellier than normal, but it won’t harm him, and that is all that matters. By having a new environment makes caring so much harder. Things get lost, items fall, and the experience becomes a lot more stressful for the person with dementia and the carers. The nurse special follows Bob everywhere he goes and they are not allowed to lose sight of him. This means there are extra people in his room and constant conversations about him which I am sure he can detect. We are talking in front of Bob now as we can’t maintain that dignity as we are on constant alert in his presence, and do not have the luxury of walking to somewhere private to talk.We are finely tuned and constantly ready for a sign of his current mood and are also wary of any hostile move he may make.

Bob’s hands and eyes are the gateway to where he is at. When his hands are soft and floppy he is calm and relaxed. If his hands become rigid and stiff and his handshakes become too firm, we all know this is an indicator that his mood is escalating. When this happens we call for a PRN (extra medication) as we have a very small window of opportunity (4-5 mins) to get the meds into him in a compliant manner. If we miss this chance, Bob will escalate and hit out and yell verbal rants along the ward. This behaviour is confronting, embarrassing and sad in many ways. Bob’s eyes also become very dark and cold when he is agitated. He will look at people with an evil stare and shake his head in disgust. If he swears in general we know things re about to get out of control.

As a family we maintained a constant vigil in the hospitals and nursing home to try and keep Bob as calm as possible and de-escalate any behaviours to avoid any hitting out or code blacks. We are scared that he will be sent to  mental health institution due to the violent behaviour and every time he gets a strike on his medical records, this brings him closer to being placed in a mental health facility. Doctors have told us that Bob would have been transferred a year ago if not for our efforts to calm him, look after his daily needs and our commitment to protect the care staff and nursing staff.

Bob’s behaviours are different this time in that he no longer engages in any activities at all and is constantly on the move. he will pace up and down the ward’s main hallway hundreds of times per day with nurse special in tow trying to stop him entering rooms, annoying others and keeping him safe. Following him all day is extremely taxing and mind numbing stuff, but has to be done. He will yell out wit no notice and this usually makes the ward ‘freeze’ and everyone stares as we try and deal with our next outburst. The environment aon the ward could not be any worse for someone with dementia. It is loud, busy and confusing. Buzzers and machines are constantly beeping, people are always talking and there is just so many people rushing past each other as they try to work in unsuitable conditions. The hospital is in terrible condition and has practically been untouched for 30 years.

The nurses have all experienced the ‘wrist grabs’ and overly hard handshakes. It is no wonder some of them ‘flich’ when Bob makes a sudden move. If they become scared it is very obvious to Bob and he seems to react accordingly and continue the behaviour. We try and teach the nurses what signs to look for and what to do if agitation occurs. I have a pre-written list of instructions placed in the front of his notes to act as a quick reference to ensure the nurses are up to speed. I often stand in front of Bob to stop him entering rooms. This can be confronting but I have few other ways of turning him around. Today he gave me a ‘warning punch’ in the stomach to let me know he was not happy and there is going to be trouble if I keep stopping him from going places.