“….that is the question!

When I fetched Buddy eight weeks ago, it was with a brown paper bag with pills. The prescriptions was clear what and when he has to be medicated. Resperidone , one in the morning, and one in the evening. The rest of the medication was a diuretic and his heart tablet. And then of course the sleeping tablet at night for a good night’s rest. No problem, and to make it even easier, Buddy is taking his medication without any questions or hesitation.

The first night already reality struck! Buddy became agitated and anxious around sun set, and he stayed like that throughout the evening, just becoming more and more confused. I couldn’t leave a carer alone with him, and stayed to try and calm him.  He didn’t like the carers around him, he didn’t know where he was, he didn’t know what to do. The only thing that he enjoyed was his food! Nothing interfered with his healthy appetite!

I would give him his medication after dinner, and his sleeping tablet, Zolpihexal and the first couple of nights it worked for a short while. At least we got him into bed.

I would give Buddy this tablet, the sleeping tablet, and then about fifteen minutes to half an hour later poor Buddy would become a zombie! He could not move, his speech was slurred, saliva dribbled from his mouth, and two people had to get him out of the chair to his bed. His feet was hardly moving, hanging between John and  me. I had to push him down onto the bed, his legs not reacting and then I had to try to get his pyjamas and pull on pants on. Buddy was zonked out as I turned his legs under the covers. His eyes was looking around but he couldn’t register anything, it felt horrible to do this to him. I felt like I was cheating him out of living life. Then he would only sleep for about two, sometimes three hours before he wet himself, but he would not be able to get up, or register that he is urinating. We had to try and get him up to change his linen, and to get dry pyjamas onto his still limb body.  But a couple of nights later, the sleeping tablet didn’t have any sleeping effect on him at all! He was wide awake! Pacing up and down the house! Switching lights on and off, lock and unlock doors seven times in half an hour, checking the windows, the curtains, and in between he tried to get rid of the carer and me! He was so confused. He couldn’t recognised us for who we were, and chased us around the rooms and eventually out of the house, believing that we were “harmful” people to him.   The third night in a row, without any sleep at all, not him and not me either….I had to make a plan. It was Christmas Eve.

The next morning I spoke to Sharon, his daughter to get another sleeping tablet from a doctor to help Buddy sleep, because I realised that the one, Spiractin, he came to me with, was only effective for a week or so. It sounded like an easy solution to me, and I was looking forward to sleep on the couch in Buddy’s house, while the carer kept an eye.  I still couldn’t leave them with him all by themselves, although they were experienced carers, I had to know what was happening in Buddy’s Demented Life!

Buddy’s life was even affected during the day as well. He started using pull on pants during the day as well, and he did funny things. He would dunk his cellphone in his “black and white stuff” to phone someone. He would open all the taps in the house…while his waiting for a “call”. He would “dissect” my blood pressure machine with his nail clippers….and his anxiousness and aggressiveness made it very challenging to care for him. That was life with Buddy…

Sharon organised a prescription, specifically asking for a sleeping tablet for her Dad, and I went to fetch it at the pharmacy. I was so disappointed and upset, when I realised that it was just another box of Resperidone! This is not what I want! I did not want another box of anti-psychotic drugs! I left the box on the counter, going home without sleep in Buddy’s or my near future!

That night was even worse, and we realised we had to put the knifes and forks out of reach in the kitchen! Buddy was a danger to himself and to us! When we succeeded to get him into bed eventually, he would wet his bed and pyjamas and everything three/four times during the night. He hated a pull on pant, and sometimes he tore it to pieces off his frail body or sometimes pull it over his head!. He was lost in a world we could not comprehend….but I still had to try!

“Please Sharon ask the doctor for just a sleeping tablet! He needs to get some sleep!”

I went to the pharmacy again, only to get a bottle of Dopaquel! which is the International brand name for Quetiapine (another anti psychotic drug!) It was hopeless! I researched this drug, only to read that it is not recommended for people with Alzheimer’s! I researched Resperidone, only to read more or less the same! A side effect was  “itchiness”  and I realised that was also attributing to Buddy waking up every hour, to scratch his legs all the time! What would some doctors do? Increase the dosage to get him to sleep, to calm him down? What was I to do?

This had to stop! Another night went by with Buddy being chased by unseen people, and the fear in his eyes, the confusion, the anger making turns, the cupboard changing into snakes…..This had to stop!

Sharon went to a pharmacy and bought over the counter sleeping tablets…something like, “sleepmore” or “sleep a lot” … and it was also decided (with advise from another doctor) not to continue with his Resperidone for a while, to see what would happen to his behaviour. That night Buddy didn’t take any medication, and I could not even get it over my heart to give him a sleeping tablet. Was I giving him stuff to drink, and he trusted me, and that stuff was not doing him any good? I hated that idea! I sat there with him until he finally went to bed. It was another rough night, but three nights later everything started to change!

Buddy is off all antipsychotic drugs and sleeping tablets, as a matter of fact, I haven’t even open the sleeping tablet packet Sharon bought. A week later, he didn’t wet his bed any more, he put on his pyjamas all by himself, he (most of the times) remember to put on his pull on pants, because he doesn’t want to wet his bed! He walks over to his basin to brush his teeth! He sleeps well, wakes up only to use the bottle all by himself next to his bed! He doesn’t chase us around or out of the house anymore! The itchiness disappeared completely! The cramps disappeared! His sleeping pattern changed from around three to four interrupted hours per night, to eight to ten hours now, only getting up to use the bottle all by himself.

Yes, he still has Alzheimer’s, he still gets confused, forgets where he is, still gets upset with a carer every now and then. He still closes the curtains and windows and doors around sun set, but only once! It is almost two months with Buddy in our home, and he is still not taking any anti psychotic drugs. I know the future will tell, and then I will tell you….

I do know that Alzheimer’s and Dementia is a disease totally individualised….and I do know this helped Buddy..that is all I know.

A lot more can be said about this, but it is enough for now. I would love to know what you experienced with or without drugs?