Difficulty staying awake after surgery

May flowers

A little background, so you can see where FIL was pre surgery - 

FIL was placed in a memory care facility in May, at the time he went in, he was somewhat communicative, could handle grooming, toileting, physically healthy, etc. He was enjoying the place, the food, caregivers, activities, and had made friends. 

Several events happened that may have led to major declines in his cognition (or maybe he is just progressing rapidly, who knows) scabies which sounds innocent enough, but the daily applications of creams were very upsetting. Soon after, he started pushing and hitting other residents, and walking became unsteady with a left foot drop. Spent some time in the hospital to rule out physical causes, then spent about 3 weeks in a mental health facility to figure out some medication to help him calm down. That was September.

On the new medicines, he definitely had more confusion and sleepiness, but was also calmer and less agitated. He still enjoyed the company of his friends and us when we visited, which was about every other day. He still knew us. He started becoming incontinent and required help bathing. He still fed himself, but hands were shaking and had to eat more with his fingers.

Then the facility flooded in November and all the memory care residents had to be moved to a new facility temporarily. That was traumatic for all of them and very poorly done. The new facility is not well run and they did not have staff to handle the surge of new residents. Some of them were not unpacked for days

He had some new behaviors starting in December. Walking with a shuffle, bending his head way forward. We asked for a doctor and PT consult but all we got was blood work (we have several issues with this place and the new nurse that I won’t go into). The last few weeks we received a call that he was walking too fast. He would hop up and walk at a very quick pace but was still unsteady. He fell, broke his hip. He has no other comorbidities (physically healthy)

He is now in the hospital- he had surgery a week ago, not a full hip replacement, just enough to be mobile again. He had to have general anesthesia . He also has a UTI. It has been a week and he is still very difficult to wake up. He falls asleep being fed (has to be awoken between bites) , he falls asleep during PT. He cannot sit up or stand up without 2 people. He can only respond  with yes or no, and even then it is not clear he understands the question. He is showing in a lot of pain urinating, but the blood work shows no infection. He is not constipated.  In his sleep “state” he is talking, laughing, reaching for things, he is constantly wadding up his bed sheets.

So, my concern is - how do you know whether this is still coming out of anesthesia or this is the dying phase? How will they make the determination whether he needs rehab or hospice?

Our plan is to rent hospital bed and other equipment bring him here and have rehab or hospice at our home. We have a sitting area in our bedroom which is a good set up for this and a sheet hung for privacy. I have some experience taking care of my mom who had ALS - so I worked with lifts, repositioning, transfers, bathing, injections, iv fluids and meds, and such. She also had PT for a while, for comfort not rehab. I am home 24/7 as is my grown son, and my husband can do a lot of work from home.

We have one doctor telling us to keep him out of rehab because they are not equipped for dementia and his needs may not be met. We have another who is saying rehab center is better because they will work with him every hour. I can work with him every hour, moving his legs (whatever exercises they tell me) and I can help a visiting PT get him standing and DH and I can do it when he’s home as well. Is there a lift that can help with standing? (I have not used one like that, only for transfer). I’m sure they will rx a visiting nurse as well - I’m guessing once a week? 

If it is time for hospice, I am hoping DH will be willing for us to do this at home as well. I know his dying wish would be at home with family. My experience with hospice for my mom was very good - the support and respite was very helpful. 

I don’t know where we are yet, I guess the next few days will tell. I am interested to know if any of you have had this experience

M1

So sorry May flowers.  No personal experience to relate, but reading your post:  sounds like it's time for hospice to me.  I can't imagine he would be able to cooperate with what rehab would require.  I hope the next few days bring clarity.  Keep us posted.

mommyandme (m&m)

I looked into a Sit to Stand lift for my mom. I’ve not used one, though I know someone on this forum recently mentioned using one.  Not sure how much your FIL will need to do to help with the transitioning.  

https://www.amazon.com/sit-stand-lift/s?k=sit+to+stand+lift

Im sorry for the struggles. 

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May flowers

Thank you all for your replies! I will look into the sit to stand and ask the hospital PT about it.

I love him like my own father, he is an amazing person. 

As for being a curtain away, I should clarify. If he is completely immobile and this looks long term/hospice, we will move him to another area of the house upstairs, with an adjacent room for a caregiver. The is a “rehab setup”, with the idea that he can get back to the level of function to go back to his friends at MC. For this short term, earplugs will be fine!

I am not worried about covid or flu that any caregivers might bring in, it’s been through our house recently and it was mild for all of us. He has been in a facility that had covid come through 3 times, he had a mild case and it was over in a few days. I know my FIL, if he had a choice, of getting pneumonia and dying at a facility or getting pneumonia and dying at home, he would choose to die at home.

He could have 24/7 hour care at memory care at a cost of $700/day in addition to the $7000 month for the facility. I think for that, we’d rather consider 40 hours a week here - much more manageable from a financial standpoint.

Oh, believe me, I have seriously wondered if it is time to report this facility to the state licensing board (not the one he was in before the move)

live in daughter

Hi May flowers, we used Sit To Stand machine with my Mom when she was unable to walk. The person just needs to be able to hold on to bars as the machine lifts person. It was a God send for us. Let me know if you have further questions on this equipment.

I would recommend a hospice evaluation. My Mom was in home hospice service for over 2.5 years. With all the changes you have described worth an evaluation. Hospice will be able to provide you with hospital bed and a lot of other equipment you may need. They also provide PT consults and other consults that may benefit your FIL.

Other thought your FIL may be experiencing delirium from surgery and hospitalization. The goal is to treat the underlying cause of delirium. Ask the hospital staff about the possibility of delirium. Pain can be a cause of delirium. If  your FIL is having pain with urination- culture negative- it could still be a UTI. Sometimes cultures do not show infection and medical staff may chose to treat based on symptoms- just a thought.

Hope this helps.

May flowers

Thanks for also mentioning the sit to stand. If he is rx rehab, that will be very helpful! If he is anything like pre-surgery my problem will be keeping him from getting him out of bed, lol. I just don’t know.

I agree about pain being a possibility. For TWO DAYS he has been crying out every time he peed, which is every 30 minutes. Hubby is at the hospital (has not left for a week, except to walk and eat) and he has been trying to get doctors to look at him, and look into the cause of the the pain. We had a good doctor today who actually did a real exam, and ordered a scan... he was holding urine. So they gave him a catheter today and he is sleeping soundly and has had many hours pain free, thank goodness.

So, this will be the real test, if the delirium is pain related, we will know over the next day or so.

May flowers

I meant to ask: Did you use a automatic sit to stand or manual?

May flowers

Well the catheter definitely helped, still pain but nothing like before. His sleep is a little more restful and he is waking better. DH did not have to wake him up between bites for breakfast. PT was better - he stood up 5 times, the last two were with very little assistance. He was moving his feet like he wanted to walk.

mommyandme (m&m)

For us, if we were to use a Sit to Stand machine, hospice would provide it if it was deemed necessary and she was capable of using it after a PT consult.

King Boo

A hospitalization for the elderly results in physical decompensation. (physical weakness, loss of usual sensory processing)  Being flat on your back in the hospital decompensates anyone, but it hits the elderly particularly hard.

Hospital delirium also hits even the healthy eldesrly.  It gradually recedes after discharge, but being in a hospital for a PWD is tremendously unsettling, overstimulating ; add in the illness, pain, anesthesia - a perfect storm for confusion and even hallucination.

If FIL had hip surgery, this alone should qualify him for a discharge to rehabilitation.  And you should have some say about which skilled nursing facility he should go to for the short term rehabilitation.

An aside for any caregiver:  It helps to do your research ahead of time and have your first, second and third choice of a rehabilitation facility to give your social worker at the time of admission (because for a social worker, dicharge planning begins on Day 1 of the admission).

FIL will be at risk for bed sores and skin breakdown - if you are in a good facility they can spot this long before any family caregiver can.

Do not under estimate the value of a Physical Therapist.  It goes beyond working with him as you would at home.  These are doctoral level professionals with aides to assist.  A treatment session involves ongoing assessment as the session is in progress.  While to our outside eyes, they are just doing exercises - it's much more involved than that.

I am sorry you have concerns about his current facility.  Perhaps now might  be the time to investigate other options.

There is also no reason to choose the MC facility for rehab, when a snf would be a temporary better setting that Medicare would cover.

The walking with his head down and shuffling sounds like it could be cerebellar changes, relating to a change in neurological status.  Of course, his physician only should be the one to assess. 

The opinion of one doctor should not impact your decision.  We encountered a shocking number of opinionated doctors who spouted off things like "not equipped for dementia"  "Hopsice means nothing", yadda, yadda.   What a dis service they did us.

A good nursing home is very used to working with dementia patients; it's the families job, unfortunately to find one (although a good elder law attorney or care manager may have this insight)  We had rehabs at 3 good places and a so so place.  I was very glad he was there at the facility because at home PT did not have the flexibility with a scheduled appointment to do therapy at his best time, whereas at the snf the therapist simply could return later for the session.

I am sorry to hear of FIl's hospitalization

live in daughter

Thanks for the update- seems some progress. Glad your FIL is getting some relief. Sleep deprivation is also be a cause of delirium. 

The Sit to Stand we used with my Mom was a battery operated one. It lifted her into a standing position so we could maneuver her to the commode- into wheel chair- into chair- into bed.

May flowers

Quick question- how in the world do you brush a dementia patient’s teeth when they can’t spit - baby toothpaste?

Update #2

He has been at our house now for 2 days. He is more alert now, and communicating (cursing up a storm, lol, a man who NEVER cussed his whole life). He has not needed any pain meds other than his morning aspirin (to prevent clots)

Anyway, I am getting the hang of turning, cleaning, repositioning him. He stood to sit on the toilet with my husband and I helping yesterday, today he stood with help, turned and sat in a wheelchair (cussing the whole time)

PT should be out tomorrow (should be daily)

He is eating very well. This afternoon he fed himself a chewy granola bar and held his cup to drink.

We are weaning him off some meds just to make him alert enough to actually do things. He was put on Risperdol, Lexapro, Gabapentin, Lithium, lorazepam (on top of his Namzaric) after hitting another resident last year, it made him calmer, but also a bit of a zombie. The docs at the hospital took him off Risperdol and Gabapentin, to help him “wake up”. The nurse suggested we could wean him off the rest. We will keep him on namzaric and cut everything else by 1/2 and see where we are. So far he is more ornery, but he is also laughing and interacting in a way we haven’t seen in 6 months. If he becomes combative and impossible to work with we will revisit with the doc  about what to start him back on. But our thinking is if he is to have any chance at walking again, he has to be alert enough to do it - not “sleeping on his feet”.

It’s all a day at a time.

I know one thing, he will not be going back to that facility. The MC he was originally one that we liked may open back up in May. The caregivers  from there are the only ones calling to check on him. We will see where he is then and decide. Maybe he just stays here depending on what we can do and help we can bring in. 

Tfreedz

Thank you for the update, I am so glad things are working out for you so far! I think your motto of one day at a time is a great one to keep in mind. You are doing a wonderful job and I’m sure your husband appreciates all you are doing for his father.

May flowers

Thank you, Tfreedz. I thought about the “one day at a time” when I was laying in bed wide awake at 2am worried about the future, lol. You just can’t do it with dementia - you don’t know what tomorrow brings much less months from now.

I love him like a father. My own father passed when I was 18, then my mom when I was in my late 20s from ALS, then my MIL from cancer only months after they moved nearby so we could help with my FIL. It has been a hard journey, but I am thankful I was able to be part of caring for all of them through their illness. Those moments are precious.

Even when FIL was cussing today. I told them if he kept it up, I’d have to give him a cigarette and a beer (he never drank or smoked either). He actually smiled. Cracked me up. 

live in daughter

Hi- so happy to hear your update.

We used an electric tooth brush with my Mom. She also could not spit out toothpaste so we would dunk the tooth brush in water to clear tooth paste and then brush her teeth again with water on the brush.

Hope this helps.