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Sundowners after a visit to the hospital

Several family members have commented here about loved ones who began showing signs of Sundowners when hospitalized, or a loved one who had dementia and perhaps some Sundowning symptoms, which worsened significantly while in the hospital.  Unfortunately, older adults in general often suffer negative effects when hospitalized.  Numerous medical studies have documented the levels of functional decline in older adults (significant as early as day 2 of being in the hospital) due to limited mobility, medication side effects, infections and more.  However, the cognitive and behavioral impacts are less often emphasized.

What are some of the factors that cause an elder with Alzheimer’s or other form of dementia to worsen in the hospital?

  • Unfamiliar environment, change of routine, unfamiliar people, noises, etc.
  • Medication side effects (as we age, it becomes harder to metabolize medication so the impacts are greater and some medications are very detrimental to people with dementia especially–unfortunately, sometimes the very “anti-psychotic” medications that are given when behavior problems arise)
  • Effects of surgeries and procedures, pain and the body’s efforts to heal
  • Infections (as patient advocates, we often ask the doctor to order a urinalyses when behavior changes rapidly, as this often indicates an underlying infection, commonly a Urinary Tract Infection)

Hospital delirium is one of the most common hospital complications for elders (read more in this New York Times article on Hospital Delirium), even in those without cognitive problems present beforehand.  Now, imagine  how this problem is magnified for someone who was already diagnosed with Alzheimer’s disease or suffering cognitive issues.

What can you do as your loved one’s advocate?

  • Advanced Care Planning is one of the most important ways you can help your loved one.  Work together with your loved one’s medical professionals on how different concerns can be addressed and when hospitalization makes sense or can be avoided.  For example, is there a way to treat an issue as an outpatient?  Why is a surgery being recommended and what are expected outcomes?  When a loved one lives in a care facility, especially, it can be challenging to convince them not to send your loved one to the hospital for things that can often be managed without a call to 911.
  • Do things to help ensure you are notified if your loved one goes to the hospital (if he or she lives with you this may not be a problem, but can be especially problematic if you live at a distance).  Make sure he or she has a “File (or Vial) of Life” indicating your contact information and that you are listed as an emergency contact to all relevant parties.  It will make a significant difference if you can get to the hospital quickly, or communicate with someone there so they understand your loved one’s situation.
  • When a loved one is hospitalized, provide round the clock care.  Can family members rotate shifts to be there all the time?  This can be quite challenging, so you might also consider hired “sitters” or home health aide/certified nursing assistants to assist with some shifts.  Make sure they have experience and training in dementia care.
  • Ensure the hospital is using geriatric safety precautions in the way they handle your loved one’s care.
  • Ask questions and advocate, advocate, and advocate some more.  Understand what tests are being done, procedures being recommended, medications being changed and the expected outcomes and timeline.  If you cannot be present, consider bringing in a geriatric care manager to be the local advocate.  Even if you are present, having a professional patient advocate like a geriatric care manager to consult with may be helpful and many can be brought in for crisis management or one-time services to fit your needs and budget.

I will be posting more advice on this topic, as well as issues like discharge planning and Sundowners Caregiver tips.  Please share your story and hints about hospitalization and how it affected your loved one or what you found helped!

You may also find these books helpful: Recommended Reading for Alzheimer’s and Dementia and this article that includes tips as well as a downloadable preparation/packing list Senior Care Advice: Managing a Hospitalization.

8 replies on “Sundowners after a visit to the hospital”

I am a caregiver for my 89 yr old father. Last week he was still driving, going to family functions, and doing his routine without significant problems. This week he displays confusion. he wakes he wakes up very confused and doesn’t know where he is. He thinks he is bleeding water from his side. He feels desperate to go home. When I tell him he is home he gets mad. Its like my dad died and someone else is living in his body. It takes him all the next day to catch up on his sleep and reorientate, only to start all over again the next night. I am exhausted and don’t know what to do.

MY MOM ABOUT 3 MONTHS AGO (RIGHT AFTER EASTER TIME) HAD TO GO N THE HOSPITAL, SHE WAS DIAGNOSED WITH MRSA; DAY 2 IN THE HOSPITAL, SHE DISPLAYED “SUNDOWNERS”. I HAD NEVER SEEN OR HEARD OF THIS. I DID SOME RESEARCH ON IT & BASICALLY WHAT U NEED TO DO IS ABOUT AN HOUR BEFORE THE SUN STARTS TO GO DOWN, START TELLING YOUR DAD THAT THE SUN IS GOING TO BE GOING DOWN IN ABOUT AN HOUR, IT’S GOING TO TURN NIGHT TIME, CLOSE THE BLINDS & WINDOWS; I WROTE MY MOM A LETTER (IN LARGE WRITING) TELLING HER WHERE SHE WAS, WHAT NURSE WAS ON DUTY & THAT SHE WAS NICE & SHE (MY MOM) ALREADY MET HER & LIKED HER, THE DATE & I WOULD TELL HER I LOVED HER & SIGN IT(A SPECIAL WAY THAT I’VE DONE ALL MY LIFE) JUST SO SHE WOULD HAVE NO DOUBTS IN HER MIND THAT IT WAS ME WRITING THE LETTER AND I WOULD LEAVE MY PHONE NUMBER. I WOULD LEAVE THIS PAPER ON A TABLE RIGHT OVER HER IN THE HOSPITAL (U KNOW THE TABLE TRAYS U EAT ON WHEN IN THE HOSPITAL) & DURING THE DAY, IT’S VERY IMPORTANT TO HAVE ALL THE WINDOWS & BLINDS OPEN. BELIEVE IT OR NOT, AFTER I DID THIS THE VERY 1ST NIGHT, SHE HAD A SPELL WITH “SUNDOWNERS”, BUT THE NIGHT TIME NURSE TOLD ME THAT MY NOTE WORKED. AFTER THAT, EVERY NIGHT AFTER I WOULD LEAVE HER A LETTER JUST THE SAME AND SHE MIGHT WOULD WAKE IN THE NIGHT, BUT WOULD READ MY LETTER & NEVER HAD IT AGAIN. THE DR.S TRIED TELLING ME THAT SHE WAS IN THE BEGINNING STAGES OF ALZHEIMER’S, BUT I REFUSED TO BELIEVE THAT….AND SURE ENOUGH, I WAS RIGHT. TO DATE, SHE HAS NEVER HAD ANOTHER EPISODE OF “SUNDOWNERS”.
JUST DO A LITTLE MORE RESEARCH ON “SUNDOWNER’S” & U & YOUR DAD WILL BE JUST FINE.
REMEMBER ALSO, AS A CAREGIVER, MAKE SURE TO TAKE TIME FOR YOURSELF (AS HARD AS IT IS & I KNOW & HAVE FULL COMPASSION FOR YOU), BUT IF U DON’T TAKE CARE OF U, THEN U CAN’T TAKE & GIVE UR DAD THE BEST CARE HE NEEDS.
TRUST & HAVE FAITH IN OUR LORD, HE WILL SEE YOU BOTH THROUGH THIS.
BEST WISHES!

If he has never had hallucinations before surgery, it is likely from the surgery and pain medications. It has happened to my husband twice after surgery with pain medications. After he got off the pain medications, the symptoms stopped.

Pat

How long did it take him to get the meds out of his system? My husband is going through this as well. It’s so frightening we’re being discharged tomorrow after 2 1/2 weeks.

My husband is in the hospital now and started having sundowners systems and I had no idea what was happening It really frightened me I started to tell the nurse that he started doing things and she said yes that’s sundowners I had never heard of it before. They ask me if the Dr hadn’t told me about it No he did not

I am dealing with this now. Surgery on Fri sat and Sunday he was seeing snakes and a other systems. He was back to eEr om Mon. Came home Tues .it starting again Back to Er and admitted. On Tyes. He gets home Sat morning. He is 85 ,I am 73. No help from family. What am I to do.? We are not married. When do you admit to long term care. Please help Dr said it was dementia Sundowners

My dad came into ER 1 week ago, he had a Ut a week prior with kidney pain. Pain got worse,tired and a little confused so brought him in to ER. Admitted him after 12 hours in ER., treating him for kidney stone. We went home thinking everything was fine. Was called by nurse to ask about my dads state of mind he would not stay in bed confused has to pee every 20 minutes. She asked if I could come out at 12:30 am. I arrived to assist with care. We were up peeing every 20 minutes the 10 then he started getting really upset. I asked if there was anything they could do she called doc. The gave him morphine he had a reaction she called the doc again gave him Benadryl about 3 minutes later he started acting and talking weird then about 5 minutes he had like the seizure they called code gave home seizure meds. He has never been the same since. Won’t sleep can’t not stop talking, hallucinations, twitching and trimmers. It seems like they don’t know what’s happening. CT scan of Brian is good. They said they think is Sundowners. I just don’t know. He was fine a week ago drove slept all night only alittle short term memory problem. help

My Dad us 92 and lives with me.
type II Diabetic and recently hospitalized with a small bacterial pneumonia.

He went into skilled nursing for 10 days to respite. Got strong and came home but is just not the same.

He is so agitated all the time, hard to tell what is blood sugar rage and what is dementia. Usually I can tell.

Tonight he woke up at 1am.
Got dressed and took pills😯
I didn’t know until it was too late!

I have them in an organizer for him and he’s otherwise good with this.

He refused to go back to bed and accept the time as correct and true. Started raising his fist at me telling me to “get outta here!” several times. Super scary. (Its like he cant really see you when hes looking at you)

After 3 attempts I called my girlfirend who tried to calm him down on speaker phone and finally got him to get into bed.
Fully clothed.

He will lie and pretend you are doing something to him . It is most disturbing because its like its for attention. Doesnt make sense.

For example when he put on his hearing aid device before he got the aids on, I gently unfastened it took it off to hang it back up and he will interpret that as a negative event. Saying things like I jerked it off of him.

Its very frightening how volatile he gets. Im really uncomfortable with his current behavior.

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