Over the last day or two, Dad acts like he knows nothing. For example, he uses his walker to get to his recliner, but then turns his body halfway so that if we didn't stop him, he'd end up sitting on the floor. He has become "helpless" over the past few weeks, poking a drinking glass at me or Mom as he sits in his chair, and expecting us to get up and take it to the kitchen. When we tell him we are not his servants, he says, "I can't get up." His mobility has improved greatly over the past week -- I am sure there is still discomfort with his sore back, but he is much better, even if he doesn't want to believe it.
It's like he wants to fall so he has to go to the hospital. He has exhibited hypochondriac behavior for several years, of course it's been worse since Mom had a stroke and therefore needed more attention. We've told him that we do not intend to put him in the hospital (of course, if there were an actual emergency, we would) because of the virus.
Truth be told, if not for the virus, we'd probably be discussing memory care, but as Mom said the other night, we can't just put him somewhere, knowing the situation in facilities right now. Even if he didn't get the virus, he would not be able to get the proper kind of care he really needs, since facilities are basically keeping residents shut up in their rooms.
So we are essentially stuck.
Re: CPAP --- yes, he did the sleep study and the cardiologist gets the data from the card. Long story short, Dad is a stubborn 90-year-old who doesn't want to wear the mask. Despite the cardiologist, electrophysiologist, PCP and multiple nurses and techs stressing the importance of treating his sleep apnea, he just won't do it. I kind of wish they would put him on oxygen, but his sat levels are good. BP is controlled with meds, but isn't low enough to cause dizziness or fainting.
Dad has never had a stroke or TIA and all CT scans in the past few years indicate no evidence of any prior brain bleeds. Mom had a hemorrhagic stroke several years ago, I will never forget those symptoms!
After checking to see he doesn't have a UTI (my MIL became completely crazy when she got one)---accept that cognitive abilities can be stable for lengths of time then one day--poof--something that they could do, becomes impossible for them.
My mother just had some kind of episode, I don't know what, I don't stay in the loop--and when I dropped off some stuff at YB's house where she lives, she was practically incoherent. MUCH worse than the month before-the last time I'd seen her.
A more urgently critical issue though is that he's not using his CPAP machine any more.
Was he diagnosed with sleep apnea and if so, when? Did he take the overnight tests to evaluate how much his SAT rate fell during the periods in which his breathing ceased? Is that the reason for the CPAP?
Our pulmonologist in explaining how Medicare determined whether or not to pay for oxygen during the day arose from specific overnight tests of oxygen SAT rates (saturation of oxygen in the blood in the blood stream). I'm thinking that his pulmonologist ordered similar tests and has them on file, and would be seriously concerned that he's decided not to continue that respiratory support.
He might not like wearing a CPAP mask, but he's also jeopardizing his health by refusing to do so.
Do you have a pulse ox at home by which you can test his oxygen saturation rate when he exhibits confusing moments, as well as when he's at rest and moving? If you can establish a baseline, you can check it against the confused periods and see if his SAT rate has dropped, then contact his pulmonologist with your records. He may need oxygen 24/7 as opposed to a CPAP.
Does he do any breathing exercises?
Is there anyone in your family who can give him a "come to reality" talk? Perhaps his pulmonologist could call and alert him to the danger he's courting?
Not medicating dad's agitation and behavioral issues in order to prolong what must be, at this point, a not very good quality of life, is a tough choice.
We ALWAYS chose to prioritize mom's mental health and contentment over her physical needs. They only thing she ever asked of me was that she not experience pain in her declining years and I took that to mean psychic pain as well.
Choose wisely what conditions to medicate and which to allow to run their course.
Men do get UTI's and if I were in your shoes I would first buy test strips (they are available online and I buy the AZO brand). It's much faster then having the doctor test my Mom for a UTI though if the test strip turns out positive then the doctor will test my Mom's urine.
I also keep D-Mannose in the house and give it to my Mom everyday mixed in her juice. My Mom has dementia and ever since I have been giving her D-Mannose supplement (can be bought online as well) her confusion has diminished.
It may not be a UTI but you have nothing to lose by checking your Dad for one.
Best, Jenna
He doesn't always have the usual leg and ankle swelling, so it took a while to figure out it was torso retention and that was why he seemed so bad sometimes.
Well worth checking it out with his cardiologist.
Walking around and being physically active really makes a difference for keeping the water moving through his system. Especially when he doesn't want to take water pills. He has kidney disease so he can't take them everyday. Making it a challenge to get him to take them, before he ends up in the hospital. Grrr!
Best of luck finding a way through with your sanity. Letting go of some of the fights to get him to comply will help you, as hard as it is.
The neurologist said there is no medication to help with the memory issues and the meds that could help with sundowning and agitation would be dangerous for his A-fib and CHF.
My mom and sister and I are coming to terms with this as the new normal and will stop trying to correct him as long as he isn't in danger. We'll just try to keep him safe, healthy and as happy as is possible, while trying to keep ourselves relatively sane.
Yes and Yes.
Depending on the type of dementia things can change overnight. Literally!
My Husband went from walking one day to not the next.
He also became very confused on how to get into the car, how to turn his body. Several times if I did not stop him he would have been sitting on the floor not the seat. He also stopped turning his feet properly so I would have to get on the ground and manually turn his feet so that he could sit down. (I had a caregiver with me that would help support him as I turned his feet..and my Husband used a walker also...If I did not have a caregiver with me I would not take him out. Trips stopped soon after this decline)
So it is possible that there can be sudden decline.
It is also possible that he is trying to get attention but with dementia it is not a thought process. IF he can get up safely to get a drink encourage that, help him if necessary. OR place a small table near him with items that he might ask for. A bottle of water, a piece of fruit and when he wants water or whatever he is drinking you can tell him it is on the table and he can help himself.
Continue the discussion about Memory Care. Start looking at facilities, you can look on line, you can call. Admitting someone may not happen next month or the next it is a good idea to plan. As places get a better handle on dealing with COVID19 it will become easier to think about placing him. COVID will not go away. Just like any other flu or any communicable disease that is transmitted from one person to another residential facilities will have to deal with it. Just as they do with "regular" flu, Norovirus, scabies and other easily transmitted conditions screening and containment will have to be priorities.
We don't know what kind of dementia Dad has. So much of the time, his neurologist said he was fine, his memory issues were normal aging, etc. All because Dad was able to answer the doc's questions correctly. I have since learned that many dementia patients are able to fool doctors. So we don't have a clinical diagnosis. I feel that once cause of recent decline is that Dad stopped using his CPAP machine. He was never a compliant patient, putting it on every night and taking it off as soon as it got noisy, uncomfortable, etc. He averaged 2 hours a night for the last year. And now he doesn't even put it on. We encourage him, of course, but we can't force the issue. Since his logic is deteriorating, he doesn't grasp that he would feel more alert and not doze in his chair as much if he got good quality sleep.