How do I help my Father with CPAP
Posted: Sat Jul 27, 2024 6:34 am
Dad is 81 and just started CPAP therapy. He was Diagnosed with Parkinson's a year and a half ago. At that time (late 2022) he had gone to the Dr with complaints of excessive daytime sleepiness (his words were I keep loosing consciousness) and difficulty finding words. He quit driving the end of 2022 because he was fearful of falling to sleep while driving. Before that time he only had mild-moderate cognitive decline where he wanted help with taxes and didn't want to drive to unfamiliar locations alone. He also started having difficulty with attention/focus for certain tasks that he used to always take care of on the farm.
Beginning of 2023 the Neurologist diagnosed Parkinson's and really didn't address the sleep issues or the difficulty finding words. We finally had to ask his primary to refer him to other specialists since that Neurologists office was not even able to call us back about adjusting prescriptions they prescribed.
He carried on through most of 2023 still able to handle activities of daily living but really not getting any support for the sleep disorder (still sleepy during day, still describing incidents that sounded like sleep walking to me.)
October 2023 he had an incident where he must have fallen to sleep in his desk chair watching TV and he fell out of it. Cognitively he has not been the same since then. The following night he started having nightmares/sleep hallucinations and the next day after that he was having night time urinary incontinence. This was all so sudden that I took him to the DR and requested they test him for Urinary Tract Infection (but it was negative.) It was back in October that we requested that the Primary Dr refer him to a new Neurologist (movement disorder specialist, it took till May to get that appointment) and we took him to a Urologist since he was wetting the bed or getting up 12 times at night to pee. I requested a sleep study because I thought the sleep disorder was perhaps rem behavior disorder because of the Lewy Body Dementia (Parkinson's and Dementia is some form of Lewy Body which tends to have sleep disorders with it.) Well the first sleep doc we were referred to couldn't even bother to call us back and every time we called them they told us to wait for them to call us.
Finally got referred to another sleep medicine practice, they were pretty quick to schedule a Tele Medicine visit with one of their nurse practitioners but about all that did was confirm that he needed to be scheduled for a sleep study which finally happened June 5th 2024. That sleep study showed that he never made it to rem sleep. He had 329 minutes of non rem sleep. 36 Obstructive Apnea, 53 Mixed Apnea and 90 Central Apnea. CAI 16.4 Total Apneas 179 and an AHI of 34.1-35.9 depending on which way you measure.
So they scheduled a titration sleep study which took place July 2nd 2024. They apparently didn't arrange for it to be a study where they could use the adaptive machine/methodology so they were only able to test the cpap or bilevel treatments and pressures. The tech that night didn't think they managed to find anything to handle the centrals but when the Dr reviewed the results, he prescribed a regular cpap with pressures between 5 and 10. He thought that at the lower pressure on cpap dad did sleep and even got to rem sleep but when they started adjusting the pressures up he started having more centrals.
So finally on Monday July 22 the Respiratory Medicine equipment supplier came out and set him up with a ResMed Airsense 11 and I think the Mask used was an Evora Full Face s/m.
The First Night he seemed to do great actually seeming to sleep for over 7 hours straight on the machine.
MyAir said 7 hr 14 min, seal adjust 100.8 l/min, 25.4 events/hr, removed mask 2 times?
He did complain of a dry mouth that first morning so I increased the humidity from 4 to 5.
Tuesday Night he used the machine less
4 hr 52 min, seal adjust 100.8 l/min, 9.6 events/hr, removed mask 3 times?
he complained about needing to blow into the machine to make it work.
Wed Night
5 hr 50 min, seal adjust 120.0 l/min, 22.9 events/hr, removed mask 1 times?
Still complaining about needing to blow and suck from the machine to make it work.
Thurs Night
7 hr 46 min, seal adjust 73.2 l/min, 34.2 events/hr, removed mask 1 times?
He said he didn't sleep at all and was having to suck and blow all night. I know he slept some because he wet the bed alot but I don't think his sleep was very good.
Friday Night
We practiced with the mask some putting it on/off early in the evening.
3 hr 34 min, seal adjust 116.4 l/min, 17.9 events/hr, removed mask 13 times?
I actually put him back to bed for a nap this morning so he could get over 4 hours on it at least
I'm planning to call the equipment supplier Monday to see if they have any recommendations on better mask fit. It seems to be sealed well when we put him to bed and when we test the seal but something must be happening. He also doesn't seem comfortable rolling onto his side while using the machine.
Just last night I discovered that if I want to access more detailed data from the machine, that I needed to put a sd card in it. So maybe later today I can actually look at some real data and perhaps get a better idea of if this is working or not. No I'm not a doctor but I've learned that one must educate themselves about this sort of thing because the actual doctors don't seem to be able to devote enough of their resources to a single patient to really support complex health issues.
Any suggestions to help dad get the most out of this therapy? I KNOW he functions better when he gets better sleep and since I was in the room with him for the sleep studies, I know he has apnea since I could hear it. After the first study I started encouraging him to sleep on his side and I saw a marked improvement in his cognitive abilities during the day probably from simply reducing the OA events. Since starting the cpap he has had two nights of seeming to sleep a bit better but I can't say that he really had a real improvement in his sleep on those two nights. It may be too soon to tell but I hate to keep burning brain cells for too long before requesting that we try something else (like perhaps something adaptive that might reduce the central apneas too?)
I think it would be helpful for him to be comfortable rolling onto his side but I'm not sure what mask would be better for that. He does tend to sleep with his mouth open so I fear a nasal mask would be problematic as I'm not sure how we would get him to keep his mouth shut at night.
Please share Ideas or suggestions for helping an elderly dementia patient with the mask. He is not combative about it, he is really compliant and wanting to make it work but he has such difficulty communicating and since I've never used cpap myself, I'm having trouble intuiting or interpreting what he is trying to tell me.
Beginning of 2023 the Neurologist diagnosed Parkinson's and really didn't address the sleep issues or the difficulty finding words. We finally had to ask his primary to refer him to other specialists since that Neurologists office was not even able to call us back about adjusting prescriptions they prescribed.
He carried on through most of 2023 still able to handle activities of daily living but really not getting any support for the sleep disorder (still sleepy during day, still describing incidents that sounded like sleep walking to me.)
October 2023 he had an incident where he must have fallen to sleep in his desk chair watching TV and he fell out of it. Cognitively he has not been the same since then. The following night he started having nightmares/sleep hallucinations and the next day after that he was having night time urinary incontinence. This was all so sudden that I took him to the DR and requested they test him for Urinary Tract Infection (but it was negative.) It was back in October that we requested that the Primary Dr refer him to a new Neurologist (movement disorder specialist, it took till May to get that appointment) and we took him to a Urologist since he was wetting the bed or getting up 12 times at night to pee. I requested a sleep study because I thought the sleep disorder was perhaps rem behavior disorder because of the Lewy Body Dementia (Parkinson's and Dementia is some form of Lewy Body which tends to have sleep disorders with it.) Well the first sleep doc we were referred to couldn't even bother to call us back and every time we called them they told us to wait for them to call us.
Finally got referred to another sleep medicine practice, they were pretty quick to schedule a Tele Medicine visit with one of their nurse practitioners but about all that did was confirm that he needed to be scheduled for a sleep study which finally happened June 5th 2024. That sleep study showed that he never made it to rem sleep. He had 329 minutes of non rem sleep. 36 Obstructive Apnea, 53 Mixed Apnea and 90 Central Apnea. CAI 16.4 Total Apneas 179 and an AHI of 34.1-35.9 depending on which way you measure.
So they scheduled a titration sleep study which took place July 2nd 2024. They apparently didn't arrange for it to be a study where they could use the adaptive machine/methodology so they were only able to test the cpap or bilevel treatments and pressures. The tech that night didn't think they managed to find anything to handle the centrals but when the Dr reviewed the results, he prescribed a regular cpap with pressures between 5 and 10. He thought that at the lower pressure on cpap dad did sleep and even got to rem sleep but when they started adjusting the pressures up he started having more centrals.
So finally on Monday July 22 the Respiratory Medicine equipment supplier came out and set him up with a ResMed Airsense 11 and I think the Mask used was an Evora Full Face s/m.
The First Night he seemed to do great actually seeming to sleep for over 7 hours straight on the machine.
MyAir said 7 hr 14 min, seal adjust 100.8 l/min, 25.4 events/hr, removed mask 2 times?
He did complain of a dry mouth that first morning so I increased the humidity from 4 to 5.
Tuesday Night he used the machine less
4 hr 52 min, seal adjust 100.8 l/min, 9.6 events/hr, removed mask 3 times?
he complained about needing to blow into the machine to make it work.
Wed Night
5 hr 50 min, seal adjust 120.0 l/min, 22.9 events/hr, removed mask 1 times?
Still complaining about needing to blow and suck from the machine to make it work.
Thurs Night
7 hr 46 min, seal adjust 73.2 l/min, 34.2 events/hr, removed mask 1 times?
He said he didn't sleep at all and was having to suck and blow all night. I know he slept some because he wet the bed alot but I don't think his sleep was very good.
Friday Night
We practiced with the mask some putting it on/off early in the evening.
3 hr 34 min, seal adjust 116.4 l/min, 17.9 events/hr, removed mask 13 times?
I actually put him back to bed for a nap this morning so he could get over 4 hours on it at least
I'm planning to call the equipment supplier Monday to see if they have any recommendations on better mask fit. It seems to be sealed well when we put him to bed and when we test the seal but something must be happening. He also doesn't seem comfortable rolling onto his side while using the machine.
Just last night I discovered that if I want to access more detailed data from the machine, that I needed to put a sd card in it. So maybe later today I can actually look at some real data and perhaps get a better idea of if this is working or not. No I'm not a doctor but I've learned that one must educate themselves about this sort of thing because the actual doctors don't seem to be able to devote enough of their resources to a single patient to really support complex health issues.
Any suggestions to help dad get the most out of this therapy? I KNOW he functions better when he gets better sleep and since I was in the room with him for the sleep studies, I know he has apnea since I could hear it. After the first study I started encouraging him to sleep on his side and I saw a marked improvement in his cognitive abilities during the day probably from simply reducing the OA events. Since starting the cpap he has had two nights of seeming to sleep a bit better but I can't say that he really had a real improvement in his sleep on those two nights. It may be too soon to tell but I hate to keep burning brain cells for too long before requesting that we try something else (like perhaps something adaptive that might reduce the central apneas too?)
I think it would be helpful for him to be comfortable rolling onto his side but I'm not sure what mask would be better for that. He does tend to sleep with his mouth open so I fear a nasal mask would be problematic as I'm not sure how we would get him to keep his mouth shut at night.
Please share Ideas or suggestions for helping an elderly dementia patient with the mask. He is not combative about it, he is really compliant and wanting to make it work but he has such difficulty communicating and since I've never used cpap myself, I'm having trouble intuiting or interpreting what he is trying to tell me.