When I dropped Dad off at the respite facility the manager told me she wanted to give Dad a 'sleeper' to help him stay asleep throughout the night. The hairs on my neck stood up because it was because of something else that I went into her office to discuss and she off handily said she was going to get their visiting GP to prescribe him something. NO, I began, because Dad has Lewy Body Dementia do you think this is wise? 'It will be fine' she replied. 'It wont make his hallucinations worse'? I asked. 'Not any more than he already is' she said. My hairs stand up on my neck and I visualised jumping the desk and ripping her head off...I'm still standing in the same spot. I realise she doesn't know about Lewy and it's medication problems. I begin 'you can't give Dad any form of antipsychotic' I say with my stress levels peaking.
'Valium, will be ok, we will just give him a little' she says. 'No, I'm not sure about that' I reply. 'What about Temazepam?' she asks. I reply 'No, I'm not sure of the classes of tablets which are harmful'. She says 'It will be ok, it may make him a little sleepier throughout the day'. I visualise F18's coming in...I reply 'All I do know is that antipsychotics can be dangerous, it's more than a little increase in hallucinations. People with Lewy have ended up in psych wards'. She looks at me like I'm the one who has lost their marbles. So I used the most extreme outcome I knew of, but I had read on the net where this did happen. Her mouth is half open...I continue 'You also have to be careful with anti-Parkinson's medication because it can make them worse'. She replies 'I don't see how that could happen'. Ok I'm banging my head against a brick wall...'Studies have shown this to be true. Some of the dangers with medication is increase in stiffness, rigidity and sometimes death'...trying to remain calm...'Do you want me to phone Dad's Geriatrician and get him to contact you? I think she may have caught on when I said 'Death'. Yes that would be good and could you email me the studies you are talking about because I'm UNAWARE of this. Ok now I'm freaking out. How did they pull the wool over my eyes when I asked if they were familiar with Lewy. I will have to be more careful in future, having people with Lewy Body Dementia stay at their facility DOES NOT EQUAL knowing, familiar, yes, but not the specific knowledge that's required.
I leave, I phone Dad's Geriatrician and speak to his more than helpful, absolutely lovely, on the ball, Clinical Consultant Nurse. I explain the situation and mention VALIUM. She says 'NO DON"T GIVE HIM THAT IT COULD SET HIM BACK A YEAR'. My stomach turns over. I hate LEWY, this isn't an easy situation to deal with. She takes facilities phone number and she asks me to email her contact details. She tells me she will speak to the Geriatrician tomorrow (it's now late afternoon) and get him to contact them with details about medication and that she will contact me when this has been done. It was this woman who picked up the side effects Dad was experiencing with Aricept...dangerously low heart rate...followed by lots of tests to determine if it was Aricept or Dad's heart. It was the Aricept.
Back to the problems at hand. I email woman at respite facility information from Lewy Body Dementia Association and Alzheimer's Australia.
The following day I receive email from woman from respite facility. She wrote that she had gone home and looked up the same sites that I sent her and that she had read the problems and was now aware of them.
I also received an email from the more than capable nurse which was a copy sent to respite facility.
I have copied this here breaking some rules but I think this knowledge needs to get out there as much as possible.
'It is best to avoid any drug treatment for wandering. Benzodiazepines are contraindicated and may worsen the problem. Suggestions: Quetiapine (seroquel) 12.5mg nocte, is the least dangerous but I would only use it if symptoms can be managed no other way.
Risperidone 0.5mg may be used if Quetiapine is not available.'
I don't want another evening like that. Daughter was having last minute law exam kittens, I was trying to get the information together to help Dad and I came down with a cold/flu. Stayed up too late helping daughter with legislation, had 4 hrs sleep and drove her to exam (why I drove her, it's miles away in an unfamiliar area and she was stressing enough without having to deal with finding the place by catching a bus and 2 trains). I felt kinda ordinary but boy was it worth it to see her come out after finishing the exam, GLOWING...wouldn't have missed it for the world.
I will be phoning the respite facility this afternoon to find out how things are going and I think then I may take along bath with a lovely cuppa tea with lemon.
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Yikes, that sounds like a handful. Good on ya for standing your ground. So many times the medical profession fights "us" on the meds we can't give for Lewy. It's always a battle and it's never an easy one. It's wonderful you have a great PCP (& his nurse) that works for you and is willing to help.
ReplyDeleteI was intrigued to read that Aricept lowered your Dad's heart rate. My Dad is experiencing the same problem but there's been no examination for the cause and his heart has always been very healthy. If you don't mind me asking, how did Aricept become known to be the cause for your Dad? My Dad's heart rate is really dangerously low that they docs are surprised he's even able to stand upright and not pass out all the time. Instead of running test they just say he'll be fine and have him come to the office every week for a check-up. We're butting our heads against a wall!
That's outrageous. I don't see how facilities can take in respites without the required knowledge to take care of them. More Corporate crap--inadequate training, inexperienced staff, just get the clients in there and collect the money. Maddening!
ReplyDeleteHi Holly,
ReplyDeleteOh your poor Dad.
How the heart rate situation unfolded-
Dad was having check up with the Geriatrician and nurse. Nurse checked heart rate, very low.
Told them I had noticed on last walk with Dad that he had wanted to turn around and come home. Didn't look well, not normal self.
Dr sent Dad for immediate ECG, telling us to STOP the Aricept (known side effect). If in 1 or 2 weeks (can't remember exactly the time frame but it wasn't long) Dad's heart had corrected itself then it was more than likely the Aricept.
Dad's heart did correct itself in that time but in that time he had further tests (the one where you wear a heart monitor/wired up for 24 hrs and a stress level test (the one where they inject radioactive stuff and scan the heart at 1 or 2 hrly intervals) in case there was a problem and Dad needed to have a pacemaker. Tests show no problems, heart corrected therefore was Aricept.
I hope this has helped.
When situation happened, Dr and nurse, made haste in getting things done. Don't want to freak you out but do something as soon as possible.
best wishes to you all
Thanks so much for sharing- I appreciate it! I'll definitely mention the Aricept as a possible culprit to my Mum and the Docs!
ReplyDeleteOne more thing- so, I'm guessing your Dad doesn't take Aricept anymore but can he take something similar or does this type of drug family all have the same sort of affect as the Aricept (ie Exelon, etc). Thanks heaps!
Holly,
ReplyDeleteDad doesn't take Aricept anymore nor any similar ones. Tyring to recall conversation with geriatrician...I was pretty upset at Dad having to stop the Aricept, kinda like I'd been hit by a bus...Dr did chat for awhile, trying to reassure me it was the best thing to do...it was too dangerous, heart could have stopped and with no pacemaker, ooooh...dad would feel better, endurance wise, but can't recall if Dr mentioned other meds.
hugs
Holly,
ReplyDeleteIf I recalll rightly I asked Dad's neuroscientist if there was anything else that Dad could take...I had recently read about a med that was helping Alzheimers and...i remember how cold this Dr was in answering NO and how she had just got back from an OS forum discussing the new med for Alzheimers but it wouldn't help Dad and there's nothing else...another hit by a bus moment.
But PLEASE ask your Dr's about this.