DH doesn't sleep...doesn't want to go to bed even

Have you tried melatonin? Best to discuss with the doctor first.

I give melatonin, 5htp, percogesic (a generic version of Doan's backache relief)
a feverfew, and skullcap bedtime every night after he is in the bed.

My husband is up and down constantly during the night. He fears his incontinence and does not want to wet the bed even though he has protective underwear. I worry about falling mostly. He fell 7 years ago and needed emergency hip repair which was an absolute nightmare. So I am constantly sleeping with one eye open through the night. Fourteen years of incontinence since a near fatal viral brain injury which has slowly evolved into mixed dementia. Throughout these years the main difficulty has been sleeping and incontinence. Nothing seems to work.

My husband of 53 years was diagnosed with Cerebral Amyloid Angiopathy in 2015. He has been pretty active in and out...going to get the mail...checking the backyard, busy, busy, busy. He drank two beers in the afternoon and about 3-4 fingers of bourbon since about 2019.
My problem was, he got to where he wanted to start drinking about 2:30 pm (1400) and drink until he went to bed usually before 7:00, sometimes 5-6:00, he got very mean and hard to deal with and he fell in the house a few times.
About 4 months ago, he decided he didn't like beer. He was drinking 2 drinks of bourbon sometimes 3, and trying to sneak some while I slept or was busy.
About the same time he hurt his ankle somehow and it was swollen and discolored, but he could walk. I gave him Cordyalis for the pain, just 1, but if that didn't take care of it I gave him another.
Until then, DH (his name is Don Henry, so those really are his initials. I may have to change and refer to him as DT for dear toddler, instead of DH for dear husband, though.)...as I was saying, up til then he made up his own medicine into daily doses and took them, except his bedtime pills, which he couldn't have until he was in bed. Because the Cordyalis worked so well I poured a few in a smaller bottle and set it by his chair so he didn't have to wait if I was busy. Sometime around the 15th of August he started complaining of stomach pain, was SOB. That was while So. California was on fire and the smoke filled the Greater LasVegas Valley,... and they are still digging up the desert floor between my house in Henderson and the Calico Ridge homes halfway to Lake Las Vegas.
Note: [Our air is filled with silica sand dust, cactus
thorns, toxic waste, and whatever else has
accumulated or been dumped there over the
last 80- 2.7 billion years]
DH has never had respiratory problems-ever- except when he broke 5 ribs in July 2020, and developed a pleural effusion. He was cleared by his cardiology group at that time and healed well and had no problems breathing since. So, that was a new wrinkle, (I'm the one with asthma and on oxygen etc.)
I also noticed he was breathing fast, sleeping a lot, almost all day, in fact and he had quit drinking any beer entirely, but fixed a bourbon sometimes 2:30-3:00. After about a week of this, it occurred to me I had not seen him take his pills for a while, so I ask him if he was taking his medicine and he said, "No."
I asked him why not, and he shrugged his shoulders. I asked him how long it had been since he had taken them and he said he couldn't remember. I asked why he had quit taking them, and he shrugged again. I said please, tell me why you quit, and he said, "I ran out and it's too hard."
When I went in to check. It looked like he hadn't taken any for about 3 weeks, and I saw the bottle with the Cordyallis on his dresser, and he had been taking those. So I took over all the medicines, got them organized etc. and took away the Cordyalis.
He went through everything looking for them, so I am sure he had been taking them all day and all night long. He was mad and wanted his bedtime pills at 2 or 3 in the afternoon, with his bourbon, which I would not do, so he threw tantrums and ran in and out the doors argued that the outside air was fine. He did, however, take his medicine but it made him mad that I stood and watched him. Then on the night of the 18th September he decided he wasn't going to bed unless I gave him his pills, so it was on... all... night... long...
said he could only breathe when he walked. About 5 o'clock am he was tired, collapsed in his chair. I was so tempted to just give him a benadryl, but I knew better, so I didn't. He wouldn't do anything I said to do and I told him, "If you won't do as I tell you or take anything I give you, I can't help you. I can call an ambulance for you if you want. Do you want me to?" He said, "No", then a few minutes later he said "Call the ambulance.", but like he was daring me to.
I did call them, and when they came, he ran to the door, and down the walkway to get in it. So, there was no assessment done on him. I gave them a copy of his medication list, told them his name, age, and birthdate through the door. He was there 4 1/2 days. He had pneumonia, an arrhythmia, high blood pressure, and a complete melt down....
I called my son at 0700 that morning and told him he had to get to the hospital, to take Copenhagen, to make sure they knew his dad was hard of hearing, has macular degeneration, chews tobacco, and is 36 hours with no alcohol.
When my son got there, he gave him a dip, told him where he was and why. DH was still mad at me and thought I was telling the nurses and doctors what to do. He told my son, "They think she called the ambulance, but I'm the one who said to call them." several times. My son said, "What does that mean to you, Dad?" and DH said, "I called them, so I can leave when I don't want to be be here anymore." my son said
"That's not how it works, Dad."
When my son left, he would put on his clothes and try to leave, He pulled a pocket knife on a nurse and ended up in four point restraints, unless one of my kids or grandkids were there with him. That was day one.
On Saturday, the 21st, in the middle of the night I called the IMC charge nurse and asked if there was some reason they hadn't ordered a nicotine patch for him, and gave him a background history. the charge nurse thanked me and said he would have a patch as soon as we got off the phone. We also spoke about giving librium to people going through alcohol withdrawal. I don't know if he got that, but DH slept that night so my daughter could go home, and from then on someone was with him around the clock. He went to the Cath lab the next morning and was cleared literally and figuratively, then discharged after I refused to send him to rehab, if I had to come down and sign him out AMA.
He came home with a new order for Amiodarone, a new drug to me, and double the carvedilol, and 2 new meds that have not come from the pharmacy yet, (who knows why?) Entresto and a diuretic spironolactone are the meds we are still waiting on. That is a another tale for another post..."Nightmare on Spague St., vol. II"

I typically post when things aren't going well and I'm at the end of my rope. Just want to acknowledge that some days are better than others.

Hubby slept through the night, which means I did too! We're both much more alert this morning and I'm going to take advantage of my higher energy level to continue clearing out my sewing room so I can set up my new treadmill in there.

Urging others to take notice of the brighter days, or moments. I often forget in the fog of exhaustion. It may not last, but I'm thankful for this moment.

Blessings,
jehjeh

God bless you... it's been pretty peaceful and nice here the past couple of days, as well. Like you, I am enjoying these moments while they're here, and trying to make room for my life and the things I love as best I can, while I can.
Thanks for your comment, and good day to you.
MEB

Are any prescribed medications helping with sleep? My Dad is waking up a lot during the night. That means my mom gets up too. They both need rest. His doctor appointment isn’t until next month.

My husband's doctor prescribed Trazodone, which also helps with agitation. It's not perfect, but it helps take the edge off so we both can get some much-needed rest.

@celia16 I’m sorry your parents are going thru this difficult time. It’s never easy. Does your mom need to get up with him? Is she monitoring his safety….from opening doors to the outside or to stairs? If she’s waking up just because, maybe she could have her own room. Your mom’s health is as important as your dad’s! You can certainly ask the doctor about sleeping meds. He shouldn’t take ones the could interfere with the ones he’s on now. Do you have a drug information book? I have Drugs.com on my phone so I can quickly look up medications before I take them. Do you live with them?