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My husband has vascular dementia and keeps getting confused. He has pulled out the hose of the CPAP, tangled up the headgear, and often takes it off incorrectly and causes it to "break". I do have a monitor but am not getting much sleep.

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You are stuck between a rock and a hard place. I worked evenings in a hospital with about 10 CPAP and Bipap patients each night. Only about 60% are compliant and dementia patients nearly always take it off within 10 minutes after leaving the room. Unfortunately it is extremely dangerous to tie hands or place hand mits on. We do not alarm the machines unless they are in ICU. Plus patients have a right to refuse care. His machine should have an alarm setting that the supplier can set for you

Some posters mentioned nasal masks... forget that.  They do not work for this instance.  I've been there and done that for pleeding patients.  Staff could not wake the patients up and have called codes.  Plus your questions should not go to nurses about this because sleep apnea is specialized to pulmonary docs, pulmonary APRNs,  and respiratory therapists.  And yes they do know about Alzheimer variations. 

Unfortunately for him, he probably has a full face mask and bipap on settings with high pressure, which can be very uncomfortable. Coming off will cause him to retain CO2 to the point that he will not wake up. Try speaking to his doctor who prescribed the machine and ask if he can be medicated for sleep: 50-50 chance. Be aware that even with sleep meds that he can break through and still pull off equipment. This is where a disconnect alarn can help. Two other options: Hire overnight, awake help or consider hospice as you need sleep. I recall a mom whose child on a home respirator died while under her care. She was so exhausted that she slept through the shrieking disconnect alarm. 

 Many alert and non compliant patients who return month after month  to the hospital with the same issue of respiratory failure have been offered all that medical care can do.  They are counseled on hospice decision making because that is their quality of life. Tracheostomy and overnight ventilators are not offered as that means specialized nursing home, never returning home and futile care.
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Hi Everyone
I am so glad to hear about all of your problems and solutions as they give me hope and support. My dad has probably developed mild cognitive impairment/dementia and fortunately the family doctor through CT scan doesn't think he has Alzheimer's. No Plaques seen in the brain yet. However, he does have dementia amongst other problems. To Sleepy1, I have a CPAP and I used to use a facial mask, it is hard to use, I had to put it on so tight, so it wouldn't leak, and even then, I can't turn. We naturally turn many times at night, imagine holding a position for 5 hours? The max time I could do that is 5 hours because after that I wake up with a back pain.
What I do use now is to use a chin strap, which holds my jaw up and mouth closed (I am also a mouth breather) and then use the small nasal air feeds, which works better, because I can turn more frequently. Sorry I had to see your post this late...hopefully it helps.

God bless.
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My husband was diagnosed with dementia about 6 years ago. He recently found out he had severe sleep apnea and was prescribed a CPAP machine. He does not like to wear it and usually takes it off in the middle of the night when he gets up to go to the bathroom. He then forgets to put it back on. I wake up usually at some point in the night and we put it back on for him. The CPAP machine starts leaking air at some point in the night, usually when he tries to sleep on his side. If he only slept on his back there wouldn't be as much trouble. In 4 months time the sleep doctor has given him 3 masks, none of which has cured the problem of the leaking air. This is keeping us both awake at night, some nights worse than others. His neurologist prescribed clonazepam to help sleep "only because he wears the CPAP". Well, he doesn't always wear it so there is another dilemma. The masks he has been given are full face masks. I tried to get the doctor to prescribe a smaller mask, one that fits only over the nose, but the doctor said it wouldn't work for my husband because he's a "mouth breather". I'm glad I found this article, maybe surgery would be the answer. Neither my husband or I am getting enough sleep.
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Wow - thanks for all the support. First of all, the Aging Brain Care program (ABC) is specifically for brain issues, I think mostly dementias. They are highly skilled and interface with the doctors and can get appointments when I couldn't. And our primary care reads their notes before seeing us. And they worry about the patient AND the caregiver. So I have contacted them to see where we go from here. While right now this issue is just starting, it certainly isn't going to get any better.
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I see that you are using an organization called Aging Brain Care. I don't know anything about it, but I sure hope and expect they know more than diddly squat about dementia! Perhaps they can help you advocate with the sleep clinic for a more dementia-friendly treatment plan!
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I have obstructive sleep apnea, and I know that treated or not there is virtually no chance it going to kill me. On the other hand, it does degrade my health and puts me at risk for other things. I treat it.

I had never hear of central sleep apnea, so I looked it up. (Thanks. I'll count this as my learned-something-today esperience.) I see that it is comparitively rare and it is caused by a problem with the control of breathing in the brain. (Is it related to your husband's dementia?) Among the treatments CPAP is listed.

I know that there are other treatments besides CPAP for apnea, including dental appliances or surgery. I assume your husband was tested and had his treatment plan drawn up at a sleep clinic. If I were you I'd go back to them and explain that this treatment is not suitable for someone with dementia. (Not all medical experts know diddly squat about dementia, so don't count on them knowing this. It doesn't mean they aren't good at what they do.) They need to come up with plan B for you and your husband.

I'm sorry you are having to deal with this. It is part of your advocacy role for your loved one. Not exactly what you may have had in mind when you said "for better or for worse," but the poor guy can no longer advocate for himself and this may be one of the most important roles you can play for him.

Hang in there! And come back and tell us how this works out for you. We care, and we learn from each other.
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I do not have dementia, but I did have a CPAP and had to fight the instinct to get it off my face. I no longer use it. My MIL has vascular dementia and CHF. She benefitted greatly from an adjustable bed with about a 45 degree elevation.
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I'm sorry that I misse spelling with" this is suwanna! " I meant to said " this decease "
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How about speaks with neurologist about that? I've been take care of both Dementia and Alzheimer and still doing it. Sometimes medication they takes doesn't works with them, have to do a research, some doctor not always knows if you not telling them. Sometimes family just busy to taking care of your own family and just not have much time to pay attention with your loved one who have this is suwanna! decease. This kind of decease is need ALOT of attention and pay attention to what they do, what they are trying to say, don't interub them when they trying to say( even though those words doesn't make any sense) or they will get angry or agitated that will get you even more frustrated because of you two can't communicated. Don't mix sleeping pills or any anxiety or Zanax ( for example ) with any others medications for bedtime, wait at least an hour.You may have to put up with moaning half hour before your own bed time to see if those medication kick in, you will get good 5 hours asleep. If you understand, they are now babies between age of 3 months old to 3 years old mentality. They are more needy, diapers has to be checked every 3-4 hours. Many more to say but hopefully it help someone out there. Good luck and best wishes.
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Thanks. Unfortunately he has central sleep apnea, which means without it he could die. Here in IN we have a program called Aging Brain Care I will bring it up with the RN - she may have some suggestions. I can't imagine dealing with 2 people with dementia.
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It doesn't sound like it is achieving its purpose. I'd tell the doctor this just isn't working.

(I can't imagine either my husband or my mother, both with dementia, using a CPAP)
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