Anyone have experience with a LO that has Central Sleep Apnea (the kind where the brain confuses signals and thinks that the LO does not need to breath)? My DH has Central Sleep Apnea and it is getting worse even with the VPAP (basically, it's an external respirator). I can't help but wonder if this is how he will die - by simply stopping breathing. Morbid, I know, but the thought just will not go away.
Sharan, several of us have spouses with Sleep Apnea. My husband was diagnosed 2 years before he was diagnosed with AD. He has always refused to wear the mask. I, too, wonder if this is how he will die. Sometimes I think it would be a blessing for him to just go to sleep and not wake up. I would like to go that way myself.
Most of the spouses have two or more illnesses or problems besides the AD, which means a lot of medication. Some have to have surgery (which can be as dangerous as it is necessary), and most are still able to continue to live and keep going for many years.
Don't think that your question is morbid!! Feel free to ask anything!
I, too, think it would be merciful for my DH to go in his sleep. But it is SOOOO very hard to even think about him actually, really, dying, even though he is not "really here" now. God, this whole thing sucks so much that my heart and soul just cannot take it ... but it must, I must. My DH's problems are all over the board and it makes the roller coaster ride so harsh. On Thanksgiving, God gave me a very prescious gift. I was actually able to talk with my DH - the real person inside. I know because he said he was sorry that I lost my best friend - him! This is breaking my heart day after day after day. I have been crying almost every single day, and that is really not like me. In fact, I am on a conference call for work and I feel like sobbing right now. Boy, that would shake them up! True, we are talking about a customer that is filing bankruptcy, but that is not something that anyone would cry about. ... Gotta keep a sense of humor ...some how.
My sense of humor is my lifeline. You can either laugh or cry about life, and I choose to laugh. My husband occasionally will smile at my jokes and it makes my day! I've been close to tears since Wednesday and they overflowed on Friday, but have receded back to "verge" level and stayed there. I can't come up with my usual humor, but I'm working on it.
Sharan, my DH has sleep apnea as well but not sure what kind. he does stop breathing when sleeping and then takes a really hard breath =scares me and wakes me or if i am awake i have to take a good look to see hes ok and sometimes i shake him to be sure. he never had a mask nor would he be able to wear one hes too claustrophobic. i guess taking into consideration what AD emplies at the end stages, any of us would rather see our spouse go from something else. A big ((((HUG))) to you and Mary too who seems both of you are going thru the blues this week. holidays and all the added stress can leave us exhausted as well. take care, Divvi
My Dh also has sleep apnea sometimes he wears the mask but mostly not. only b/c he is so childish and thinks that he is hurting me by not wearing it. This morning he was asleep in the recliner while I was getting ready for work. He was so quite, I put down my hair dryer and thought what if this is it. What if I go in there and he has stopped breathing? I also hope that his passing is this peaceful, but I like everyone else am just not ready.
Oh, Shell...I know exactly your feeling! My DH sleeps in a different room (it is impossible to sleep in the same room). Most of the time, he is awake by 10:00 a.m., but some days he does not get up until 11:30 a.m. On those days, I am almost afraid to go check on him. One morning not too long ago, I turned off his oxygen machine (which is in a different room than his because it generates too much heat) and it was so quiet and he was so still that I had one of those "mini-reels" go through my head where he was dead and all of the things that followed. It took my breath away, but I did muster the courage to check on him and he was <obviously because I am writing this now> just sleeping.
This whole experience is so surreal sometimes. We talk about the day that our LO will die, but then something happens that makes that inevitability more concrete and it really throws you for a loop.
My recent "jag" was brought on when I tried to cuddle with my DH while watching TV with him. He let me put my head on his chest, but he really wasn't there ... there was no connection. I tried to initiate intimacy and it was like an automoton was there instead of my DH. He was only going through the motions. He let me hold his hand, but he really didn't hold mine back. You know what I mean? He's there and he's not there.
We are in the process of sleep apnea diagnosis. We are just waiting for the machine, but DH has said several times that he does not want to use it...even after friends of ours praise what the machine has done for the quality of their lives.
Mary...I wish I could choose to laugh. I try to turn situations around for him with the "glass is half full" point of view. I usually have little success. My DH cries or sleeps all the time. Depression is horrible.
My DH has obstructive sleep apnea. When I got back from Iceland last year, I noticed that he was snoring under it or making lots of noise. Took him to the pulmonologist and a sleep study was done and his machine needed to be adjusted as did his mask. I would consult your pulmonologist about this rather than guessing what it could be. Uncontrolled sleep apnea is dangerous and can lead to stroke as well as hypertension. By the way, my husband's new mask put marks on his face which the doctor did not like so we went in to see about that and he has a mask which he is not really happy with. His old one I think is ok, the tech seemed to think it would be but adjusted the straps. If he gets any bruises on his face from the mask see about that too. Our doctor did not want to see any "breakdown" start. He has the bruise on the bridge of his nose and one starting beside his nose on the right side. I hope this helps.
By the way. I forgot to mention that for some the mask is a lot of trouble but for my DH, since he flew attack jets, it was no different than his flight mask..And he dreams a lot of his flying days..seems he has adventures every night while I get the nightmares.