A Hospital Misadventure

Joe C.

On Monday morning a nurse from the MC called to say they found DW slumped over and thought it was possibly a stroke of TIA, they called 911 and she would be transported to the hospital. I headed straight to the hospital and arrived shortly after the ambulance arrived. They did a CT scan which ruled out a stroke but not a TIA. They suggested doing an MRI but I told them there was no way she would lie still long enough and I would not agree to sedation. They kept her for 2 days observation and did a bunch of other test; EKG, Echocardiogram, X-rays, etc. In the end they found nothing. 

Over to 2 day hospital stay DW appeared to become much weaker and more confused. She could not walk even a few steps to the bathroom without two people supporting her. She was clearly much more disoriented than usual and was not eating well. I was really concerned that she had entered a major stage of decline. The hospital wanted to send her back to the MC in an ambulance but I protested that would just be additional trauma for her. I convinced them that she would be better off driving back with me and I just needed a staff member to assist me getting her into the car. I told the MC staff I would need their the assistance getting her out of the car and a wheel chair to get her back to her room. Two staff met us with a wheelchair, we got her out of the car and they took her inside while I parked the car.

It only took a couple of minutes for me to park the car and drop off some paperwork with nursing. When I got down to DW’s neighborhood she was walking around just hold hands with a staff member. I was dumbfounded, 30 minutes earlier she could not even stand without 2 people supporting her. They gave her some lunch which she did a pretty good job with and she was almost back to her baseline in an very short time. What I learned from the experience is what a very dramatic effect a change of environment can have a a PWD. I will visit her tomorrow and hopefully the bounce back continues.

M1

That's amazing Joe.  Glad everything checked out, I guess there was no way to avoid it.  But you clearly made the right call to get her back to familiar territory.

Joydean

Joe, so glad everything checked out okay. That had to have been a scary but so fantastic for the change in just a matter of minutes! So very happy for you and your wife! 

Jeff86

Joe — a very frightening experience for you, with a medical mystery and severe disorientation. I’m glad to hear things have resolved as well as they have and hope that continues to be the case.

There’s also a great lesson for all of us who are nearing or contemplating placement but feel like we’re ‘giving up.’  Your advocacy on your DW’s behalf was exemplary, and resulted in the near return to baseline.   So, the takeaway is that we remain our LO’s caregiver and protector even when we are no longer doing all the day to day caregiving.  

Thanks for sharing this incident.  And kudos to you.

Ed1937

Joe, I'm sure you were scared to death. Sorry you had to experience that, but glad everything seems to be pretty normal now. Fingers crossed it stays that way.

White Crane

Joe, what a terrible experience to start with but it turned out okay!  I'm so glad you got her back to MC where she could settle back in.

mrl

Oh my gosh Joe-Wow. Great call on your part, we truly know our people.

Sending you best wishes,

Michele

toolbeltexpert

Joe that sure sounded like a panic situation, I am so glad it turned right around. And I totally agree about environment, I am going to my first care team meeting and I will be looking for how my dw is doing in the setting she's in because I believe our house is a major trigger for her. Boy I hate this disease.

ButterflyWings

Everything Jeff said. 

And I wonder if she may have had a temporary unresponsive moment like my DH has begun having — twice in the last 2 weeks now he has had an apparent drop in blood pressure. Once before getting up from the toilet, once while standing afterward, as I pulled his pull-ups & pants up. Another member’s mom has had the same experience just sitting in her chair. Apparently fainting briefly, unable to walk and then back to baseline pretty much.  

jmlarue

It's those loop de loops on this roller coaster ride that really take a toll on LOs and their caregivers. There's just no way to anticipate them and no way to prevent them when no one can figure out the cause. That was a terribly frightening ordeal for everyone. Kudos to you, Jo, for your ability to keep your head when everyone else was losing theirs'.

David J

Unfortunately, my wife has been taken to the ER several times, for falls and seizures. Once in the ER she was very agitated and continued to be agitated the two times she was admitted. The first time, I brought her back to the MC myself, but the other times I used an ambulance because I was afraid I couldn’t handle her by myself. 

The second time, the ambulance crew were having trouble getting her out of the ambulance. Even though she was strapped to the gurney for safety, she was still able to get her hands free and was grabbing ahold of the inside of the ambulance and wouldn’t let go. She may be small and skinny, but has surprising strength. I was able to go into the ambulance and calm her enough so they could get her out, and into the MCF. She was still calling out and struggling  

Now to the point of this story:  Once inside the MCF, she stopped struggling and was quiet. When the EMTs got her into her room and on her bed, she immediately rolled onto her side and went to sleep. I assume that she felt relief to find familiar surroundings and people. She was home. For those of you struggling with the decision to place your LO in MC, or others who are struggling with their LO’s acceptance if living in an MCF, I believe they will eventually come to think of it as home. 

A. Marie

Just a note to all those in Joe's situation that you do have the option to refuse transport to the ER. I've told the staff at my DH's SNF that transport is to be considered only as a last resort, and not without consulting with me even then. Too often, an ER run ultimately does more harm than good.

Joe C.

Quick update: I went to visit DW this morning and she was up & about like nothing had happened.

David - I completely agree that a familiar location & people where they feel safe makes all the difference.

BW - I believe she just had a temporary unresponsive episode that triggered 911 call. When she was at home I saw these from time to time and I would just get the to lay down for awhile.

Marie - I now have the paperwork on file at the MC stating they should not transport DW to the hospital without my consent.

Ed1937

Joe, thanks for the update. Glad things are going well.

Sligo177

Joe -

Another one of those terrible, frightening experiences that are so hard to figure out...I am so glad she is better now.  I wish they could tell us how the world appears to them.  My DH has been in the ER twice recently, and both times, he had uncontrollable shaking (myoclonus) and was much more confused while there.  It was because of the environment, and it went away, I discovered, when he was calmed down/sent back to rehab.  Avoiding hospital and ER if I can help it!

I'm happy today was better for you both!

MaryG123

Practically speaking, how does one avoid the ER?  What documents need to be in place to allow a spouse to not dial 911, when others would consider it the right thing to do?  Are the care facilities willing to respect a spouse’s wishes in this also?   I was with my mother when she had her final and fatal stroke, and called the hospice team.   While we were waiting, my father decided to call 911, which started a whole cascade of unwanted events, with her ending up on life support for a week before she passed.  It was not what she wanted.  Now I’m looking ahead for my DH, who would be blessed to pass from a cardiac or vascular failure.  Anyone have any suggestions?

Joe C.

Mary, The answer to your question depends of what state you live in and that states regulations. We live in MA and there are two state regulations that can be use; 1. Health Care Proxy (similar to a medical power of attorney) and MA Medical Orders for Life Sustaining Treatment (MOLST). The MOLST form lets you declare things like No Artificial Ventilation, No Artificial Nutrition, No Artificial Hydration, ect. Any adult or anyone’s Health Care Proxy can fill, update or rescind a MOLST form at any time. One of the options on the MOLST form is Do Not Transfer To Hospital (unless for comfort care), by choosing this DW’s MC cannot transport DW without my permission. You would need to see if you state has a similar form witch any medical professional could tell you.

Below is a link to the MA MOLST form:

 https://molst-ma.org/sites/molst-ma.org/files/MOLST%20Form%20and%20Instructions%208.10.13%20FINAL.pdf

A. Marie

The documents Joe has mentioned as necessary in MA are necessary in NY as well. I filled out a NY MOLST when DH was admitted to the SNF in June 2021, and I've had two or three occasions to use it since then. But nothing that's gone wrong with him would have been improved by a trip to the ER, and DH's ward supervisor agrees.

MaryG123

Thank you both for the great information.  I’ll find out how Florida handles it.  Is it the durable poa and medical surrogate designation that allows you to make those decisions?

Joe C.

Mary, Yes being designated as a person health care agent allows you to make decisions & sign this document.