Bedtime problem

Masticate · May 27

M1 · May 27

Welcome to the forum. Sleep fragmentation is pretty common and results from disease damage to the sleep centers in the brain. Talk to his doctors, as there are medications that can help. Seroquel at a dose of 25 mg at bedtime worked wonders for my partner and has remained effective for over two years.

ButterflyWings · May 27

Ohh I remember those days (and nights). The only thing that helped was meds, and time. Each phase eventually passes and another behavior arrives to keep us on our toes.

Would he listen to music or even watch a harmless TV show (oldie, sitcom, househunters?) - no ads and no violence, etc.! I brought my laptop to bed with us during this period and started our bedtime routine with a movie or even slideshow of photos, always something I had seen before to be sure it was appropriate and would not trigger unwanted action (he wandered like crazy) or anxiety etc.

We even watched Boston Pops and Austin City limits…well, he watched while I slept. I do recall giving him a sip of juice and then back to sleep. It worked sort of. Was still an exhausting time. I'm sorry you are going through this. BTW, he was on 100mg of Seroquel at bedtime already and it did not stop him from waking up early ready to talk (3am) I understand what you are going through! Tie a knot at the end of that rope, and hold on!

Babz0226 · May 27

What was the longest hardest phase just wondering??

ButterflyWings · May 27

Each one has been hardest at first in a way, due to the learning curve and to my sadness at clearly seeing his disease progression. The toughest for us was middle stages because he was strong, mobile, could talk so convincingly that lots of people unknowingly enabled him in problematic behavior (bankers, medics, former colleagues, salespeople, some family, etc.) This was Stage 4 and part of 5.

Stage 6 was the longest for us, by far - but it was a bit of a honeymoon compared to 4 and 5 when we did not quite have his med routine down pat to control hallucinations and delusions, and he was not yet dependent enough for ADLs and IADLs to qualify for home help. Meaning, wifey (me) had to try and do it all. You know. Stage 6 for us lasted years and he had mellowed a lo,t plus I had learned workarounds and accessed more support for his now obvious impairment. Help is crucial and I'm sorry to say it is still hit or miss. So while he is at a much tougher place right now, in the final stage (7), I know more and have tools.

The main thing that helped was a brain shift for me — to know that we can make it through this, one hurdle at a time. Others have. DH has a terminal disease that is going to wreak havoc with our lives and strip him of everything he ever knew and had. When I keep the focus on who has it worse (him, not me), I can pull my big girl pants up (sometimes several times a day!), take a deep breath, say a little prayer, and keep going.

This forum has been a true life saver. A port in the storm. And it was the best advice his neuropsych gave us (on diagnosis he pointed us to AlzConnected for the incredible knowledge and community spirit). Priceless.

Babz0226 · May 27

Thank -you always so helpful.

ButterflyWings · May 27

You are so welcome. We all are in this together. I have received SO much help here through the years. And am still receiving help daily! It is an honor to pay it forward. I hope you get some rest. For a while there, I just slept whenever DH did. Morning, noon, night, whenever.

jsps139_ · May 27

Talk to his Dr about a Seroquel dose at bedtime. It works for my DH. (He was getting up through the night). Incontinence and getting up through the night, in my opinion, are the hardest to deal with. Without proper sleep, being a caregiver is almost unbearable as our own health is in jeopardy.
I hope this gets resolved for you. You need your rest.