We are dealing with something I don't remember hearing or reading about before. DH is still doing reasonably well mentally, and is able to do much more than we had expected after such a long time of dealing with this disease. However, his respiratory rate and heart rate keep going down and down and down. And his episodes of central sleep apnea keep increasing. (Central sleep apnea is when your brain forgets to tell your body that you need to breathe. Last week one night he had over 30 episodes of this each hour! This was very scary for both of us, because the sleep specialist already told us that even one episode of central sleep apnea can be something you never wake up from. And these episodes were not really helped when using a CPAP or an ASV, which gives even more breathing support than a CPAP.)
My own--decidedly un-physician--opinion is that it sounds like maybe the part of his brain that controls these automatic things is being damaged by the disease. I know that dementia can damage the parts of the brain that control speech or behavior, but I've never heard of it damaging the part of the brain that controls things like breathing and heartbeat until the very, very last stages of the disease.
We've had a couple of medical professionals tell us they think we need to call hospice, but others look at us like we're nuts to even mention hospice, because DH is still walking and talking.
So far this year DH has had four sleep studies and been on three different CPAP/ASV machines. He's seen two sleep specialists and a pulmonary specialist. The respiratory tech spent a very long time with us when she delivered his last new machine. We are waiting for news of an appointment with a neurologist. Everyone seems to be as stumped by this as I am. I was wondering if any other spouse had encountered something like this. Any help would be appreciated.
You mentioned that "medical professionals" recommended Hospice. Could you be more specific? Which medical professionals?
I have no experience with this, but my non professional opinion agrees with your assessment. If I were in your situation, I would seek advice from the neurologist who is treating him for his Alzheimer's.
My DH was walking and talking when he went on Hospice. He was on for around 10 months and it was not till the very end (last week and a half) that he was unable to walk and talk. But the decline was dramatic in those 10 months.
The last few months my husband's breathing has been off. Probably started last fall. I do believe he stops breathing more but other than that it is hard to put into words - just know his breathing is different. At day care they tell me he has an irregular irregular heartbeat but the EKG showed nothing. His PA said it was normal but he didn't listen to his heart, so I don't know what is going on if anything. He leaks air more often than in the past but it is a different sound than when it would leak out of the corner of is mouth or the mask has moved. Really weird. He is due for his yearly card reading on the CPAP, so will be interesting to see if anything unusual shows up.
I honestly can not see why the area that controls breathing can't be affected first. This disease is in many ways predictable but then again is not. We all know certain things will happen to most but the order they happen is not always the same nor are all affected with the most common symptoms. Make sense?
I do miss the VA in the Portland/Vancouver area. They had actual doctors vs PA's and was easier to communicate with.
My husband was ambulatory until few weeks before he passed. You yourself can contact hospice and request an assessment. They can say no. If they do you can contact another hospice which is what I did and in my case he was accepted. If he is accepted they will reevaluate every 3 months. He must be showing objective and measureable signs of decline.
My husband had severe sleep apnea too. He was walking with assistance (balance issues) and talking up until 2 weeks before his death. I believe in the end it was the apnea that took him. He was only in a Hospice unit for 2 days. What are HIS wishes. Mine wanted Hospice as soon as he could qualify. It was in his living will which he took care of as soon as he was diagnosed. I knew that the meds that they used would compromise his respiratory status. Once again...it was his choice and it was a better option than the "terminal agitation" he was a victim of in the end.
Claude was still walking and talking when he went on Hospice. The Home Health Nurse noticed noticed how fast he was deteriorating and contacted his doctor who recommended Hospice. I knew he was losing weight but being with him 24/7, I didn't notice the other changes that much. She only saw him every 10 days or so and he was noticeable to her.
He passed about four months later. His death certificate said Alzheimer's as cause of death which helped the statistics but I really felt CHF played a big part.
Hindsight is definitely 20/20 and I realize now I should have placed him rather than keep him at home until the end. Caregiving for 10 or so years wrecked my health and after seven years, I am a semi-invalid.