Sleepless In Jerusalem
It has become clear to me, that those of us caring for a loved one with cognitive decline are living in our own mini-hell. It should not be more difficult for us than for the patient, but in fact it is. The patient does not have to resolve every problem which presents itself. In fact, they solve none at all. Not their fault. They are unable to do so. That leaves me and thee.
Hubby is sitting at the breakfast table as gentle and sweet as I have ever seen him. He is discussing Manchester United and Manchester City soccer teams who are essentially tied for first place in the league. I could not care less, but am overwhelmed by his good mood and his sense of humor this morning. He has showered (with no complaint), dressed, and is ready (actually eager and impatient) to go to his Melabev club in two hours.
This is after the week of manic behavior, nights with no sleep, hallucinations and the experiences I have shared with you, dear Diary, over the recent days and weeks.
Everything has a cause and an effect. It had become obvious that whatever medications we have been administering to help Hubby sleep at night, were not only ineffective, but were causing psychosis. I remember the film Network where Peter Finch shouts out “I am mad as hell and I am not going to take it anymore!” C’est moi… I could not take it anymore. A phone call to our family doctor (Dr. N) – to discuss changing Hubby’s meds (yet again), found that it was his day off. On reflection, I did the math as to how long it would take to receive an answer to our medication conundrum. Dr. N returns tomorrow. He will return my message at 6 P.M. He then would call our geriatrician (Dr. B) to discuss a change of medications. It takes at least another day to speak with him. Then Dr. N needs to get back to me when he can find time in his busy schedule. That can take many days. I must then pick up the prescription, once it has been written and prepared. All in all, it could take a week before we could implement any changes at all.
Really? Neither Hubby or I could have survived another week of no sleep and stress. Time for creative thinking. Avoid the family doctor and go directly to the specialist. Impose on him by sending a detailed message to his phone, and hope for a response.
Shock of shocks, I got an immediate answer. Dr. B, promising to call me the same afternoon, and his word was gold. I shared with him our nights from Hell, the hallucinations, and my concerns that the new medication (which Dr. B had himself prescribed) was causing the problems. He agreed, and recommended a change. In the meanwhile, he explained that Hubby should not be given a nighttime sleep aid for the next two nights.
A bit of imaginative thinking on my part: I asked if it would be okay for Hubby to take the same pill at night, which keeps him calm during the day. This pill keeps him calm for up to six hours. Dr. B. said it wouldn’t hurt to try. So last night, we omitted the serious sleep meds, and I gave Hubby the additional light pill as agreed.
We did not have Violet sleeping in last night which meant that it would be my turn to calm Hubby’s agitated soul throughout the wee hours. (Isn’t that a strange term?… Could it be related to how many times one gets up at night to go to the bathroom?)
Another difficult night ahead? I went to sleep, very uneasy in the knowledge that we had changed his medication schedule. How would his brain react to the ping-pong game we are playing inside his head?
Hubby fell asleep easily. I, however was awake with my favorite Turkish TV series “Love is in the air.” It says it has only one season, but the series has over 100-hour segments to watch. I may never sleep again! I know I am digressing again… my one fault.
Having finally drifted into slumber at 2 AM, I found myself waking every hour thereafter, listening for movement, waiting for my name to be shouted in such a manner as would make me jump out of my proverbial skin, and looking for light indicating that Hubby was walking around. Nothing. No disturbances? How can that be? At 6:30 AM I finally saw that Hubby was awake after more than eight hours of sleep. No noise, no problem. When Violet returned thirty minutes later, she found Hubby singing to himself, in a terrific mood. I pulled the delicious pink blanket up (and over) my head in complete confidence that I could return to my uncompleted dreams in peace.
The first action of this day should be to ceremoniously throw away the bag of the pills which have been causing nighttime horrors for hubby. On second thought, perhaps there are people in my Zoom group who are using this medication with success. I will offer it there before succumbing to my dramatic inclinations.
It is hard to believe, however it is true that the same medication which is supposed to calm the brain, “can build up with residual amounts, and cause the opposite reaction. Not just this particular medication… but the entire spectrum of these drugs can cause a reversal of their intended purpose in certain patients. Perhaps it is because of the interaction of a specific drug with others that the patient has in their system. This is why finding the best treatments takes time and why what works for one patient, may not work at all for another. This was what I suspected, and now it has been proven to my satisfaction.
If only this was the end of the medication saga. I am quite sure that it is not. All calming dementia medications seem to work for a while, and then become ineffective with time. Thus, I will purchase the new prescription on offer, and hold onto it in case it is needed. I might call caring for Hubby “a work in progress”, except that I have no idea how long each triumph will last.
Most progress seems temporary at best. This is a condition which must be tackled one day at a time. Each day brings new challenges and instinctively we know that there is more waiting for us ahead. Still, I am thrilled that Hubby and I both had a good night’s sleep, and that he is cracking jokes. We are laughing. My neck muscles have relaxed, and it should indeed be a lovely day today.