Last night I received a call from Patti’s care facility advising me they were upgrading her bed alarm and informing me of the incident that prompted the change.
A passing attendant making rounds noticed her sitting on the edge of her bed. Patti had managed to deactivate her bed alarm, because she claimed she wanted to get up. Talking Patti into staying where she was, another attendant fetched the sit/stand lift and they transferred her into her wheelchair. … Once in her wheelchair, immediately Patti wanted to go back to bed. <grin>
For year’s at home I’ve labeled one of Patti's MS sleep related behaviors, the “Jack-in-the-Box”. Patti will want to go to bed, often will even fall asleep and then pop right up and try to get out of bed. Almost immediately she’ll want to go back to bed, and sometimes the process will repeat itself a couple times.
Because Multiple Sclerosis involves basically short circuiting of communication to and from the brain and the body, strange things can happen.
The major risk is a fall because she seems to ‘forget’ that she cannot stand nor walk, though she will demonstrate extraordinary clarity in thinking for some parts of the episode, as evidenced by her deactivation and disconnecting her bed alarm. Talking with her during a “Jack-In-The-Box” she is lucid and determined about ‘what’ she wants to do, but is stumped by any question relating to ‘why’.
This is not a consistent behavior. Weeks can pass without such an occurrence, and then suddenly it can happen several times a day.
Multiple Sclerosis can drive you nuts as a caregiver. This is not a symptom, or an exacerbation just a random reoccurring sequence of physical & cerebral short circuits. It can be more dangerous than any symptom or exacerbation because the end result if unattended is a fall.
Years ago when Patti’s neurologist was encouraging us to look at 24/7 attended care facilities, he made a convincing point. While MS is not traditionally considered a fatal disease, that is a flawed “statistic” derived from death certificates and official cause of death. Too many people with Multiple Sclerosis are seriously injured or die from falls. “Accidents” can mask the real culprit, in his case - MS.