Sundowning and Other Strange Brain Behaviors

Last night as I sat by Dad’s bedside, feeding him chocolate ice cream (his favorite), which mostly ended up in droplets on his hospital gown, he asked me: “Do you hear that?”

“Well, there are a lot of things to hear.  There are people talking in the hall outside your room.  Is that what you mean?”

“No, I mean there’s a saw running.  Are we in the basement of the shop?  Did I, or we, leave a saw running?”

“I don’t think so.  We’re not in the basement of the shop.  We’re in the hospital.”

“No we’re not, we’re in the shop.  In the basement.  Please go turn off that saw.”

I listened for a bit to see what he could be interpreting as a saw, because he was getting a bit agitated.  In fact, he started trying to get out of bed.

There was in fact a sound that could be saw-like, if you didn’t know and your brain was addled.  It was an air compressor that feeds air into the high-tech leg-massaging pneumatic stockings he’s got on.  So I pointed that out, that there was a compressor running and that’s what was making the saw-sound.  He looked at me like I was trying to sell him a bill of goods.  But he calmed down about that, resigned, apparently, that no one was going to shut down the saw.

A bit later he heard a group of nurses chatting in the nurses’ station.

“I think they’re making a movie out there.  One of those spy movies, I think.”

“What, like James Bond?”  Sometimes it’s better just to go with the flow and not try to “reason” with a delirious person.  Arguing with them about their relative view of reality can agitate them.

“Yeah, sort of…(unintelligible speech sounds).  “Are you part of that movie?”

“No, I’m not in the movie.”

He nods his head and closes his eyes.

He’s sundowning.  It’s very common in dementia.  Somehow, when night comes on, even if the room is well lighted, they lose touch with reality.  Everything gets surreal and they can become frightened, and even try to run from unknown foes.  Many falls occur from this.  Unfortunately, in institutional environments it often leads to restraints: people being tied to their beds so they won’t climb out and fall.

It’s one of my greatest fears about my dad going to a nursing home, that they would put him in restraints when I wasn’t there.  I curse my mental illness for making it impossible for me to stay with him 24/7.  I can’t because I have to take this heavy cocktail of meds at night, and I wouldn’t be any good for helping him even if I was there.  Besides, if I don’t sleep I get very sick, and I can’t risk that.  I wouldn’t be any help if I had to be hospitalized myself, and I wouldn’t be able to spend quality time with him either.  So I am going to lobby for giving him a dose of Haldol at bedtime, to ward off the heeby-jeebies and let him sleep.

This afternoon I thought he was going to leave the planet.  He was Cheyne-Stokes breathing for a while.  Cheyne-Stokes is a pre-death breathing patten where the person takes 4-5 increasingly deep breaths followed by a period of no breathing for 10-15 seconds.  It’s the respiratory center in the brain shutting down.  I sat by his bed and cried my eyes out.  My mom, who had gone out to get us hot fudge sundaes, came in and saw me sitting there bawling.  At that moment Dad was breathing, so she said “What’s wrong?”

I said, “He’s Cheyne-Stokesing.”  She knows what that is, being a geriatric social worker, and having started up a hospice in this county.

“No he’s not,” she said.

“Watch,” I said, and he took four, five increasingly deep breaths and then stopped breathing for a good ten seconds.

She went over to him and shook him, and he opened his eyes and mumbled something unintelligible.

“He was just asleep.” she said.  We both know that people can go in and out of Cheyne-Stokes for days or weeks before they die, but it means the brain is getting ready.

I tried to get him to eat some ice cream, but he wouldn’t.  I have never seen him refuse ice cream before.  I asked him if he wanted water and he mouthed “yes,” so I got his pitcher and put the straw to his lips, but he couldn’t manage to open his mouth.  I told him to open his mouth but then he couldn’t close it.  So I took the straw and got some water in it and dribbled it into his mouth, and he swallowed it.

When my mom was out of the room, he opened his eyes and looked way up above his head.  His eyes widened, then he looked at the foot of his bed and mouthed, “Who are they?”  I know who he was seeing: the angels who surround a dying person.  I whispered the Sh’ma, the central Jewish prayer that is said twice a day and at the time of death, and I softly sang some other psalms.  He mouthed the Sh’ma with me, then calmed down and closed his eyes.

I was sure he was going to die today.  The nurses all got concerned too, and came in and checked his vital signs, but everything was ticking right along.

His doctor came in to see him later in the afternoon.  She said hello, and he perked up and smiled at her and returned her ‘hello.”

“How are you feeling?”

“Just fine, thank you.”

“Does anything hurt?”

“No, nothing hurts.  I feel fine.”

I was thrilled, and amazed, and felt like kind of a jerk for thinking he was moribund.  The doctor gave me a lecture on the phenomenon of Sundowning, even though it was bright and sunny at the moment.  I nodded my head.

Now I’m at home, having a break and writing this.  In a little while I’ll go back to the hospital and sit with Dad till ten or so, and try to keep his mind busy so he doesn’t try to climb out of bed to turn off the saw, or rip out his Foley catheter (which keeps his bladder empty), which he has been trying to do all day.  And I guess I’d better eat something.  All I’ve had today is a Cliff bar and a McDonald’s hot fudge sundae, not the best nutrition in the world.

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  1. im so sorry your dad is so ill. sounds like nighttime haldol would be a good thing, for him and you (and family). he might get better rest, and be more aware during the daytime. and no, it would help no one for you to stay with him 24/7, because you need your sleep to care for him. if youre not well, you can’t help at all.

    I know there are some nursing homes like you described, but, myself having worked in nursing homes for 20 years, i can say that not all nursing homes are like that, especially if the family is very highly involved. I know you don’t want him to be placed, but hopefully you can find a better one, if it comes to that, and be involved so that your wishes are made clear, and your presence ensures their adherence. i hope that you will find some help and support, here or in person, to help you both through this terribly sad and difficult time.

    warm and comforting thoughts and (((hugs))) your way.

    • Thanks, Kat. Last night he got some Percocet and a wee bit of Haldol at bedtime, slept very well, and is much more lucid today. He took an active part in deciding that if he did not significantly improve with rehab, that he would stay as a permanent resident at the nursing home. We had some very touching conversation, sharing our thoughts, emotions, and tender memories. I snotted a lot; in fact I’m still snotting. Bigtime tears last night.

      • wow that is really a big thing. that he was so much more lucid, and the decisions that were made with him involved. that is good. you will not have to feel guilty that he may have to move to a nursing home. and, as i said, im sure you will be very involved with his care there, and that will ensure they do treat him as you ask.

        wishing you and your parents all the best warm caring thoughts.

  2. I’m wishing you strength to get through the days ahead……A few years ago I sat with my dad by his bedside. I never heard of Cheyne-Stokes breathing before, but I do recognize the pattern you describe. As hard as it is to go through, I’m sure you know it is considered an honor to care for a parent as they near the end of their lives. Wishing you peace and comfort in the days ahead. You are a wonderful daughter.

  3. annesspirit

     /  January 19, 2014

    I’m sorry Sweetie. My dad had sundowners. He would wake in the middle of the night and think he was dying. He would call 911 and have them take him to the hospital. At about 8 am or so he would call me and tell me to come get him because the food was no good there. He did it once too often and had himself checked into Tampa General instead of the local hospital where they knew him. He fell during the night trying to get to the bathroom and cut himself. From that he contracted MRSA and died. He was 90 but it was sad. I can understand your worry. It’s normal. God designed us to get dementia and die. There is nothing we can do about it and there is nothing you can do. Please let me know if I can help in any way. Take care of yourself. Anne

    On Sun, Jan 19, 2014 at 6:30 PM, Bipolar For Life wrote:

    > Laura P. Schulman, MD, MA posted: “Last night as I sat by Dad’s > bedside, feeding him chocolate ice cream (his favorite), which mostly ended > up in droplets on his hospital gown, he asked me: “Do you hear that?” > “Well, there are a lot of things to hear. There are people talking in the > ha”

    • Oh, that’s such a sad story, Anne. I’m sorry you (and your dad!) had to go through that. My dad told me today that everybody gets to this point at some time–meaning that death is a part of life. He has always been the philosopher, and will be till the end, I’m sure.

  4. Im am with you in spirit Laura.

  5. D'Alta

     /  January 19, 2014

    In the last few weeks of his life, my dad would hallucinate about barn fires, battles in pastures, and lazy workers around the farm. The fires terrorized him. Those fighting the battles wore no clothes. And those workers… I lost count of the trips, trudging through the snow, asking them when in h*ll they would finish! Lazy they were, some of those St. Lawrence County workers. Yes, it was much easier to go along with the hallucinations and the “trips to the train station to pick up Ma”. We would convince my dad to go see the one RPA who could even be convinced to see him–he had burned his bridges with all his docs because of his self-medicating ways. Hallucinating, loopy, nutty as a good fruitcake, we’d get to the RPA’s office and my father would become clear as a bell… Of course, the RPA could not do a thing. Even took K with us one day to describe–in medical jargon–what was going on. Nothing could be done. My sister, brother, and I took time off from work because we dare not leave my dad alone with my mom. Who knew what he would do? His passing was a relief when it came…

    For some, leave-taking and letting go is hard work, as hard or harder than living. I pray that when it is time for your dad to leave the ones he loves, the angels carry him with all tenderness and their wings brush your cheeks with his final kisses. Praying for your continued strength, Laura, to care and to cry.

  6. Laura, my thoughts are with you and your family.

  7. My prayers are with you and your parents. Do what you can to take care of yourself, too.

    • Thanks, Rabbi. I appreciate your prayers. Wish you were here–the closest rabbi is two hours away. I’m going to call him, though, once my dad is situated in the nursing home, and see if he will come up and maybe even put on tefillin with him.

  8. savemefrombpd

     /  January 19, 2014

    Such difficult times. There are no words to describe this.

    Keep on with the Sh’ma. That’s a big thing to do. When my grandfather passed away a year ago now, my dad managed to get him to put in tefillin for the first time in his life and I saw photos of it and I’ve never seen him look so proud and connected spiritually, it was amazing.

    So any mitzva you can do yourself that is also for your father too is great.

    I’m with you, not physically, but you’re on my mind and in my soul.

    I know it’s easy to say, but please stay strong. You’re doing a real good job.

  9. Laura,

    Funny but true story…..(and if I am commenting too much here just tell me to knock it off!). The last part of this made me thankful I can write to you. Last week we moved my elderly mother in law into our home. it is both to care for her and financial reasons. My husband lost his job in Nov and is still unemployed. She lived in a property we own about 10 miles from us and we are (embarrassingly) filing bankruptcy. We are trying with all our might to keep our three bedroom house. The funny part is this. Yesterday, Edward, my hubby and I left the house frustrated to get away and we pulled into McDonalds to do what??? Get Hot Fudge Sundays. I have not had one in years. We felt bad hiding and eating them in the car. He and I were actually talking about my blog and how I just wanted to sneak away and write so we could leave the painstaking trials we are going thru. More so, the last 3 of 4 nights in a row, I have dreamed of my grandfather who just passed in a nursing home this past Dec. I have not dreamed much of Pa but this week, it has been reoccurring. I woke this morning and told Edward I think Pa is trying to tell us to ease up on your mom. She is not going to get better and my Pa just put my mom through 4 years of caring for him knowing he would not get better and they fought all the time…. My mother in law is 80% blind and has a brain tumor as well as diabetes and is only 66. Edward gets so mad at her since she eats/ sleeps and does nothing to try and get better. Edward remembers her as feisty and high energy and he wants his old momma back. So, why the long comment??? Because I hope with all my might I can be a tiny light in your world right now as you were for me on a night I wanted to truly end my life and I found your blog. So, I salute you with my new crave. A Hot Fudge Sunday.
    Peace Laura. Peace to you now.

    • Oh. My. God. Holly, I had no idea you are in such a tough situation, from one end to the other. I have been through bankruptcy–it is hellish but you live through it and ten years later (“only” ten years later) it is wiped from your record and you are back as if it never happened. You MIL moving in…Oh. My. God. On top of everything else. Sending you strength to get through all of this, and hot fudge sundaes! When I went through bankruptcy they let you keep your house and one car, I hope one car each bc you have to get to work, etc., somehow. Hope you have a good lawyer and a compassionate judge. Love to you, Holly xx

  10. Strength and peace to you. I know its easy to say but still I hope that you are able to pull strongly.


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