Alzheimer's Spouse in ICU

mymothersdaughter88

My mother has alzheimers and it's a new diagnosis (fall 2021), so we are all still learning. My father was put into the ICU yesterday and I know it's thrown all of our worlds upside down. My dad is her primary caregiver too. What suggestions can anyone share for helping my mom cope through all of this uncertainty and anxiety? We are staying with her in her home and taking her to and from the hospital each day and taking care of meals and her meds, but she's not sharing with us how she's feeling and I know she's nervous based on her tell tale signs. I want to make sure we're doing all we can to help her cope. 

I'm also looking for resources about where we go from here....an incapacitated primary care giver and an alzheimers patient....I don't feel comfortable leaving her alone as she is always with my dad for the most part. She's capable of making meals, driving, going to and from, she was diagnosed with moderate Alzheimers so she's still very functional, just gets confused from time to time, loses her words, talks endlessly on a loop, etc. 

Lots of questions...any and all suggestions would be helpful! 

Ed1937

I'm so sorry your dad is in ICU. That really makes it hard. Somebody needs to be with her.She shouldn't be left alone, especially at a time like this. 

Maybe you should sit down with her, tell you you love her, and ask her to tell you what she is feeling. She needs assurance that you're there for her.

Last of all, if she's moderate in progression, she should not be driving. One bad accident could wipe out everything she has. Even if it's not her fault.

Welcome to the forum, but sorry you were forced into joining.

ACBird

My mom is newly diagnoses and her husband (my step father) is planning to be the primary care giver.  He is not in good health physically and I think his cognition is dropping off as well.  I want each of them to have a back up in place for durable power of attorney for medical and financial.  Even at that i think situations like yours are bound to happen - there will be disruptions that in care that they will struggle with.  My siblings are not local, my step siblings and I do not agree on much.  The likelihood of us agreeing on a course forward is slim.  I envy you a little that your parents are both yours without the added layer of a blended family. 

My grandfather cared for my grandmother (Alzheimers also) until he physically could not.  He fell and broke his arm.  Both of them went in to assisted living at the same time.  Grandpa thought it was only for his arm and to help grandma settle, but we knew he would not go home again.  It took this big even for the transition to happen - he would not hear of assisted living before that.  Same with great-grandpa; wouldn't go to assisted living until he had a stroke while driving (he already had dementia).  I want to hope that the family learned enough from these situations that we know waiting for a disastrous health event is not desirable, but making the decision to go to assisted living on their own isn't happening.

I am really mad at them.  

JJAz

Sorry that you're having to deal with.  It happens a lot, unfortunately.  Consider respite care for Mom is you're not able to stay with her 24/7.  It's frequently available in memory care facilities.  A two week minimum payment is typical.

JJAz

We had a similar situation.  My Dad was the caregiver and his wife was the AD patient.  They were both early 90's when we insisted that they move to assisted living.  She resisted but acclimated easily with him there.  It added years to his life to have the help (meals, laundry, cleaning, etc.)

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MacyRose

We are in a similar situation with caregiver FIL and dementia patient MIL. I also went through this whole cycle with my own mother (dementia patient) and father (caregiver).  Realistically, you are going to need help.  IF your father is discharged from the hospital, he will be sent to a rehabilitation place for several weeks.  After that, he may need either nursing home care or Assisted Living.   You need to get out now and look at care facilities.  Get recommendations from friends and go look at the care facilities yourself and have a list of at least 1 Rehab facility you like and 1 Assisted Living and 1 nursing home.  I am hoping that your father will recover and eventually be discharged, but with something like this there are a lot of unknowns.  Try to pick places that are close to your home - like within 15 minutes.

Find out if your parents have POA's for medical and financial if you can and also find out if they have longterm care insurance.  Figure out what kind of facilities they can afford.  

In the meantime, on top of looking at facilities, you need to think about mom and yourself and your own family.  Are you able to just completely drop your life and move in with mom and take care of her?  Because that is where this is heading.  With my own parents, I could not do that and as they lived in a different city, I hired in-home caregivers to look after them.  It was EXPENSIVE but I really had no choice.

I would find a caregiver to come in daily and take care of her meals and train her to look after your mom.  You can put the meds in a big box like this; https://www.amazon.com/MedCenter-70265-Organizer-Reminder-System/dp/B000RZPL0M/ref=sr_1_59?crid=3JE8TLX8BRCIZ&keywords=1+month+medication+organizer&qid=1661301121&sprefix=1+month+medication+organize,aps,120&sr=8-59

This way the caregiver can dispense pills to your mom.  If you don't hire a caregiver, this will make it easier for you to dispense meds. 

My BIL is stuck in your shoes right now and has spent the better part of the last 8 months taking care of his mom while his dad has been in and out of hospitals and care facilities.  They have all had Covid - one after another which started at the rehab facility dad was placed in - luckily they all got over it easily.  But it has been a ordeal especially since my BIL and his wife are trying to move to their new home which they bought 8 months ago and have not been able to due to his parents. MIL has dementia and cannot care for herself but is not far enough gone to be forced into care.   BIL's new home is 4 hours away.  He needs to get his parents to his new town.  FIL is already there in a care facility but mom does not want to go and cannot be left at home alone.  Who knows what will happen, but I know one thing, my BIL is a great caregiver and no one on earth could do any more for his parents than he has.  I think his dad realizes this, but his mom has dementia and doesn't.  

With my parents, my dad had colon cancer surgery and my mom got on the phone and told my cousin dad had "died on the table."  I have no idea where mom came up with this idea.  Maybe it was because dad was not home.  So a couple of days after dad's surgery I got a crazy call while I was with dad at the hospital from my cousin who was trying to plan when to come for the funeral!  LOL!  Being an only child, I had caregivers with dad in the hospital and caregivers with mom at home.  So I slingshotted out of the hospital and back to my parents house to let mom know dad was NOT dead.   Dad did get post anesthesia delirium, however, so it was a day or two until mom could see him.  The doctor had knocked him out with medication for a few days because the delirium made him angry and he became violent and paranoid.  But when he woke up, dad was mostly back to normal.  So that's one thing you should do now is get a caregiver who can be in there with your dad 24x7 to keep him oriented and keep you apprised of what is going on in intensive care when you are not there. 

I know all of this is a lot.  When your dad gets out of the ICU, he will go to a regular room and then one day, seemingly without warning, they will call to say he is being discharged and where do you want him to go.  So it is best to figure out what rehab he will be in now rather than having like an hour to make the decision.  It's quite overwhelming!

MacyRose

Here is what you can expect to have happen:  Your dad, after some time, as he gets better, will be moved back to a regular room.  Frankly, it is best to have a caregiver sitting with him 24x7 NOW to make sure his needs are being met and prevent hospital delirium. The caregiver will take him to the bathroom or get the nurse if needed, order his meals and help bathe him and care for him. He may well need to go to rehab for walking since he has been in bed so long.  So, all of a sudden, the hospital will call you and say he is being discharged but needs to go to rehab, and ask where do you want him to go?

You need to prepare for this now.  Find out what rehabs are near your home and visit them.  Choose the one where your dad will go.  It should be within 15 minutes of your home so visits are easy.  The hospital social worker can help you with a list of rehabs.  

You mention you are staying at your parents house.  Where do you live?  Do you have a spouse and your own family?  If you live in another city, or far away, you need to start thinking about moving your parents near you or one of your siblings.  

My BIL is currently in the same situation you are in with his 90+ year old parents, just a bit further down the line.  FIL who was MIL's caregiver has had a series of hospitalizations over the past 8 months.  My BIL has actually been caregiving for his mom for 8 months now.  Just before this mess started, my BIL and his wife bought a new home which is in a beautiful oceanfront community.  However, the parents live in another city 4 hours away and he has had to spend the last 8 months caring for his parents and has not been able to move.  So he is paying expenses for 2 homes and his wife is stuck in their original house and he is with his mother in his hometown.  After the last hospitalization for dad, my BIL had him moved to a Rehab facility in BIL's new town, but unfortunately they have all come down with covid one person at a time which, for the country in which they reside, means 7 days quarantine for each person which has delayed BIL reuniting his mother with his father in the new town as she had Covid 14 days ago. My BIL was the last person to get Covid and he just got out of quarantine yesterday. Fortunately, Covid has been mild for everyone.  In fact Mom and Dad has NO symptoms at all.   MIL is saying she won't move to BIL's new city but she could not survive on her own in the hometown, so BIL is going to take her to visit dad he hopes - as she goes back and forth saying she won't go and then agreeing to go.  I'm hoping she will be agreeable today. Dad graduated from the rehab hospital and is now in a longterm care facility where he and mom can share a room.  Dad still needs skilled nursing, so he cannot go into an AL facility.  So now, my BIL is going to try to get mom up to his new town and check her into the facility with dad, then he and his wife can complete their long-awaited move.  There is another BIL in the same country with them who tried to help BIL - and wound up being the second person in the family to get Covid.  He lives 2 days drive away from his parents hometown.  We live well over 2 days flight plus several hours drive time away in a country halfway around the world.  My husband just had major surgery, is now in PT and cannot travel, so we have been supporting BIL's efforts by Skype.  BIL has been doing EVERYTHING humanly possible to care for his parents.  They are lucky to have him, but unfortunately, his mother is treating him, the person doing the most for them, as the bad son.  It always seems to be that way - that the person who literally drops their entire life and does everything possible for the parents is treated as the bad guy.  Luckily BIL has a good attitude about it.  We will see over the next few days IF he is able to effectively reunite his parents and move his mom in with his dad.

Your choices will be:  

Home care for mom (either you or you hire caregivers) with dad in rehabilitation hospital.

or 

Move mom into rehabilitation hospital with dad.

When my dad was in a rehabilitation hospital, I had hired caregivers who sat with him 24x7.  I had other caregivers taking care of mom in her home.  My parents outright refused to move so I went the in home care route and hired 24x7 caregivers since I had no choice which led to me going back and forth from my city to theirs at all hours of the day or night.  When my mom died, we moved my dad to our city and he absolutely loved the place I chose for him.  UGH!

My BIL arranged for his mom to move in with dad at the rehabilitation hospital in their town, which worked fine until his dad had a stroke and he was hospitalized and then diagnosed with Covid.  Due to the stroke, plans changed and after the next hospitalization, dad was moved to a rehab in BIL's new town with the plan to bring mom there to move in with dad.  Unfortunately, much time was lost as everyone went through Covid quarantines, one person after another.  With the quarantines finally over, my BIL is attempting to move himself, his wife and his mom to his new town now.