For some, aging as I am with spastic diplegic cerebral palsy or any such brain injury is not easy, with lots of men and women experiencing daily pain in arms and legs that just don’t work the way they used to, to the constant throbbing pain in the spine, to a chest pressure that sometimes mimics a heart attack. Though constant, the discomfort may be dull, requiring no pain management interventions, or for some the pain may be so severe that they require morphine and other such narcotics. I do quite well on a daily basis except when it rains as my body does not tolerate humidity well at all — thankfully, I very rarely have to medicate/sedate. I do take a non-prescription diuretic ‘as required’ because I don’t want to get locked into taking something longer than I really have to or need to.
Those of a ‘certain age’ appreciate the need to get up and move if they are able. Findings from a report published in the Annals of Internal Medicine found that sitting for excessively long periods of time is a risk factor for early death. What’s not explored is the implications for those who cannot walk or ‘move about’ as the ‘typically aging’ person is able to do.
The differently able have a whole host of concerns that need to be addressed as part of their daily living plan so clinicians involved with developing specific regimens need to be aware of the extent of limitations and what tasks/exercises that would improve health and wellness might be incorporated into a daily routine. If possible and practical, that routine needs to be maintained as well during periods of hospitalisation.
Should I ever require hospitalization for illness or injury, I would expect that nursing staff to fully accommodate those needs specific to my birth and ongoing mobility disorder; they must afford the same consideration to all patients under their care who have special needs outside of those that brought them into the hospital in the first place. To not accomodate unique needs is not doing their jobs and if some nursing staff caught in the trap of a cavalier attitude gave thought to that reality of how how their behaviour impacts patient care, they’d make changes or be compelled to make them.
Nurses have a duty to ensure a patient’s comfort and safety. Is their nursing career a calling or is it ‘just’ a paycheck? I don’t think I’m off the mark when I say that some nurses are not always doing their jobs in a manner that speaks to genuine care of patient; they’re trapped in a complacency that can and often sadly does put patients at risk. Years ago, during a hospital stay, I was put at risk when a nurse actually grabbed me to ‘assist’ me. Her action could have caused irreparable damage. That is my reality. It’s the reality of many with long-term chronic disabilities who are hospitalised and the full impact of what they have lost over time must never be dismissed by givers of care who are treating them for conditions that directly impact their disability.
Administrators need to be cognizant of the fact that some nurses are failing their patients and corrective measures must be taken to address those concerns in a timely fashion. When a patient says no, the patient means no. Do no harm is paramount.
In my opinion, having been put through my paces from Monday to Sunday during my formative years and knowing from where I speak, I believe that seniors in care facilities who no longer walk, or no longer walk as much as they used to may actually like to engage in a light exercise regimen. In fact, a few exercises done before bed will actually contribute to a better rest — that ‘good tired’ achieved from physical activity. Too often, sleep is induced with medications; certainly, they have their place, but what if they could be replaced with a few exercises to work the arms and legs, the spine and the core? A medicated/drugged sleep is not a restorative rest and doesn’t contribute to a stress/pain free day. Movement of limbs actually reduces pain, if done slowly and gently. Think about how you’d feel if not able to get up and about, or not be able to reach for this or that on a table beside your bed - a table that may be ‘just out of reach’. Because it doesn’t take a long time before a group of muscles weaken, it reasons that better toned limbs would contribute to more efficient self-care in the clinical setting.
Patient health and wellness must be a co-operative team approach and staff must co-operate with patients who have often lived for decades with conditions that require they be handled with a different kind of care than the mainstream patient without disability.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, New Brunswick with her aging Australian silky terrier and a rambunctious Maltese. She can be reached at carmacrockwell@xplornet.ca via email.
