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Clinical me vs. human/daughter me
Posted: Sunday, April 14, 2019 6:36 PM
Joined: 4/5/2019
Posts: 4

Hello.... I have a father diagnosed with Alzheimer's Disease and is in late stage at this time.  He has also been accepted for hospice care due to "failure to thrive" and weight loss.  He lives in a skilled nursing facility along with my mother (his wife).  My father is 91 and mother is 99.  We've recently separated them to different rooms as his behaviors were causing my mother a lot of distress, though she can still visit with him as they are on the same floor.  (She has heart problems and is having a hard time handling her husband's decline).  My father, though very weak and having sustained several falls recently, can still pull himself up and try to walk.  This is how the falls have occurred.  He is not cognizant of using a call button to alert staff and still feels he needs to use the restroom, so gets out of bed and tries to do this himself.  Since he cannot be supervised 24/7, they have him sit in a wheelchair near the nurses' station during the day to observe him.  However, he is still verbal at times and expresses his desire to go to his bed when asked.  He is also experiencing some restlessness and fidgety behaviors, especially at night (after 9:00 p.m.) and was caught trying to walk down the hall to find my mother last night.  Luckily, staff was able to get to him quickly and help him back to bed.  

My Dad has poor safety awareness, yet is still stubborn and wants to do what he can independently, which now is very little.  He is still eating some and taking fluids.  He tends to sleep much of the time, except for these restless moments and at times will tolerate going to restorative dining to eat with assistance.  He indicated his neck was hurting as when in the wheelchair, his head bobs forward onto his chest as he falls asleep.  He stated today he wanted to go to bed, but when in bed, they cannot watch him enough to possibly prevent another fall that could be catastrophic.  He does not seem to like being in the hallway and it is an indignity to him to be in this position.  So.... it comes down to do I honor and respect my father's wishes to go to bed and risk a fall, or do I disregard his desire to go to bed and allow him to be in the hall where he will be safer?

I've discussed this with the facility staff and hospice staff, and was told "there is no right or wrong answer... it's up to (me)."  Since I am his daughter (only child) and I've worked in this field for quite a number of years, I am battling with the "clinical me" that says, keep him in the hall to keep him safe, but the "human/daughter me" does not want to strip my father of the last shred of dignity he has in determining where he should be.  I am also looking into a reclining wheelchair to make it more comfortable, but this still is not like being in bed and is disregarding his desire to make about the only decision he is still capable of making.  Would like to hear from anyone facing this dilemma and how you resolved this.  Thank you all for your help in this difficult time.

Mimi S.
Posted: Sunday, April 14, 2019 7:23 PM
Joined: 11/29/2011
Posts: 7036

Welcome to our world FloridaTish. I'm so glad you found us.

I completely understand your problem. There are beds with an alarm system that notify saff if a patient tries getting up from the bed.
Posted: Sunday, April 14, 2019 7:41 PM
Joined: 12/4/2011
Posts: 16900

and you can lower the bed so that the chance of injury is greatly reduced.


Posted: Sunday, April 14, 2019 7:50 PM
Joined: 4/5/2019
Posts: 4

Thank you, Mimi S.  But in Florida, such alarms are NOT allowed.  This state has such ridiculous rules and regulations; obviously developed by people who don't have a clue about dementia or any other medical condition.  Also cannot use bed rails (considered restraints).
Posted: Sunday, April 14, 2019 7:53 PM
Joined: 4/5/2019
Posts: 4

Hi jfkoc,

They did lower the bed as low as it would go, but it's still high enough that a fall would be bad.  Back in the day, we actually placed mattresses on the floor.  It worked.  Now... that too is not allowed in Florida.  Amazing.  I'm waiting for the day when Florida will break off from the U.S. and float out to sea and become its own country!

Posted: Sunday, April 14, 2019 7:59 PM
Joined: 4/5/2013
Posts: 835

Parking him in his wheelchair in the hallway does not seem right to me.  Is there a living room or common area in sight of staff, where he could relax in a LazyBoy recliner and look out the window, listen to music, or browse some magazines?
Dreamer Lost
Posted: Sunday, April 14, 2019 9:08 PM
Joined: 3/7/2019
Posts: 184

FloridaTish, so sorry you are going through this. My father (now deceased) was in SNF the last 1 1/2 years of life and was very similar to your dad, though no dementia.  He too kept trying to get out of bed, wheelchair, etc.  I will share our unfortunate story.  They did try parking him by the nurses station to keep an eye on him but didn't do that very well.  Dad would try to pull himself with his feet back to his room and ended up falling out of his wheelchair (he also leaned forward with his head) in the hall.  They parked him in his wheelchair in his room and he tried to get back in bed and fell forward onto the bottom corner of his bed tray and ended up fracturing his neck.  We had surgery done, put in some screws but he declined and eventually passed 6 months later.  He was not happy, mom could not take care of him, although she spent every day for hours there (and I lived out of state) but there are still a lot of hours unsupervised in a 24 hour time period.  We had the bed lowered and matts put next to his bed so when he did fall trying to get out of bed to go to the restroom (which he kept doing), the falls were minimal (they were worse from the wheelchair). He was very stubborn and wouldn't listen to anyone about not getting up without assistance and he didn't have dementia, just stubborn. I think the reclining wheelchair might help prevent your dad getting out of it but he probably won't be happy about it (and the nurses tend to put them in the wheelchair for hours) (a recliner sounds nice if they have one or maybe you can bring one into his room). Maybe they can try the wheelchair only when hospice or someone is there to be with him and possibly walk him around, take him to meals, etc.. We didn't have hospice till near the end of life so it was only my mom at my dad's side. All my dad wanted to do was stay in bed (with my mom at his bedside to wait on him) and finally the last few months that is what he did. You can only do what you feel is best at the time and if a catastrophe happens (like my dad) it happens.
King Boo
Posted: Monday, April 15, 2019 6:50 AM
Joined: 1/9/2012
Posts: 2977

Clinical you or not, you realize that not everything that happens to Dad is a result of any responsibility at all on your part?  As a fellow clinician, let that go.  Patient outcomes sometimes happen due to fluke event.   Combining clinical responsibility with long term decision maker responsibility clouds things.  Not everything rests on your shoulders, your decisions.

Your Dad will go through a phase when he has multiple falls.  Sometimes in a week, sometimes 3 a day.  There is nothing, anyone at all can do to stop this, short of hiring a 1:1 bodyguard .  It's part of the decline.  No safety awareness, no judgement, cannot be under survelliance 24/7.   Falls happen even at the nurses station.

The nurses station is a part time solution for only PART of the day, perhaps when Dad is at his most alert or most active.  This can only be ballparked.  It is not feasible to spend days to months in a reclined gerichair or a wheelchair, so at some point, Dad will need to go to bed, albeit with room checks.   Is his roomate aware enough to call for the nurse if he falls?

Our room dynamic was odd.  The two roomates were pretty much oblivious to each other's presence - - except if one was in distress.  My Dad would holler "nurse" when his room mate had to go to the bathroom, and his room mate would holler for the nurse when Dad would fall.  You would not have expected that ability of either man.

You just mae the best out of this phase and eep your fingers crossed that  no major injuries happen.  But no one can stop falls.

I was pretty obsessive on this issue until I realized it was eating me up but nothing could be changed.  

King Boo
Posted: Monday, April 15, 2019 6:52 AM
Joined: 1/9/2012
Posts: 2977

BTW, try a bedside urinal.  May take care of the getting up for the bathroom bit.  My LO actually got very fixated on using the urinal, took care of the getting up for the bathroom
Posted: Monday, April 15, 2019 6:16 PM
Joined: 2/16/2019
Posts: 66

Is there any chance of strengthening him with PT or walking with assistance? Of course his weakness will worsen every day because he is sitting or lying down all the time. I understand if therapy is not possible, and insurance will not pay for hospice AND therapy, though hospice aides often do a lot of strengthening as palliative care.

Is he unable to use a walker?

 I think the hospice folks will be very very helpful to you. I would think the hospice approach would be to let him do what makes him happy regardless of risk. But facilities have liability fears. I believe hospice works with them on that, at least in some states.

Urinal is a good idea, maybe a commode.

One of those lift chairs might be great. You can lie back and sleep (all the way flat) and then you can sit up and they actually help push you up.

I've let go of this with my mom. I hate to say it but a bad fall might be a blessing. Just not one that disables and requires tubes, that kind of thing.

Again, hospice is going to help you.


caregiving daughter
Posted: Monday, April 15, 2019 7:35 PM
Joined: 11/27/2012
Posts: 2047

Wow the no pads allowed around the bed is surprising to me. How low can the bed go? If not enough, can anything be rented? I would be concerned about a fall and a fracture that needs to be surgically corrected to reduce acute pain. You certainly don't want to go through hip surgery. Wanted to add that in our mc, just about all residents were sleeping by 7:00pm. Maybe a couple folks stayed up later. They were tired. Can he get more activity during the day or be woken earlier so he can get on the schedule he wants?
Rescue mom
Posted: Tuesday, April 16, 2019 10:40 AM
Joined: 10/12/2018
Posts: 702

I’ll try to keep this short....much like King Boo said.

my mother was in both nursing facilities and assisted living facilities.  She had serious mobility issues but refused to call for help getting up or down, or make much use of a wheelchair or walker. she would try to get up, down, walk alone.

Yes, she fell many times, often right in front of nurses trying to get to her. Amazingly, no broken bones, but other injuries.

Various staff said they see this occasionally, and there is little they can do. Reatraints are illegal.

Either the person comes to accept help moving, and walker/wheelchair, or something really bad happens. Or they die of something else first.

As someone said, you can only do what you can do, and prepare mentally for a catastrophe.

Posted: Tuesday, April 16, 2019 11:07 AM
Joined: 6/3/2013
Posts: 666

Get an airplane pillow for his neck.
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