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Why you need to be an advocate during a hospitalization
King Boo
Posted: Friday, January 11, 2019 8:57 AM
Joined: 1/9/2012
Posts: 2965

This is perhaps the best article I've read that illustrates how healthcare breaks down for our elderly loved ones with dementia.  Note:  the family member advocate was a physician.

It's an awful feeling to read this,and to know that at times there were moments I had to walk away and 'trust' the care, simply because I could not be there 24/7. You cannot leave toddlers alone at home.  Be the pest that wants to know you LO's fluid intake by mouth or IV that day - confirm that medications were give.  Confirm that a meal was served - don't settle for a verbal yes, ask for the documentation.

Posted: Friday, January 11, 2019 11:11 AM
Joined: 6/20/2016
Posts: 1836

Agree.  And to add, confirm that a meal was not only served, but eaten.  My mother, due to a hospitalization, became unable to feed herself (also became completely incontinent because it was easier to put a chux under her than to take her to the bathroom, but that's another story) and I came in one day to see a tray in front of her and her staring at it but unable to know what to do with the utensils or how to unwrap the plastic from the tray.  

How many meals were served like that and taken away uneaten and I wasn't there?  Don't depend on the hospital staff to understand dementia.  They don't and it's not beneficial to them to do so because it puts more responsibility on them.
Posted: Friday, January 11, 2019 12:11 PM
Joined: 9/7/2017
Posts: 788

Amen.  I will add to that: 

- they are not staffed to take care of patients with dementia. they simply do not have the time to, as mentioned here, feed a patient, or have someone there to make sure they don't pull out tubes, wires, etc. 

- they are not trained to care for patients with dementia 

- hospitals are not build for patients with dementia

My father in law had three extended hospital stays at stage 5 and 6.  My husband and I - who both work - were it for oversight and aides weren't on the table because he was violent and combative and we couldn't find any agency willing to send someone new out for a violent/combative patient on a hospital ward. 

We did our best.  They tried new sedatives on him which was the WORST time to do that, but no one felt like they had a choice.  He was tearing out anything that could be torn out and had to be tethered (tied) to the bed with wrist restraints.  It was heartbreaking.  He was miserable.  Like a greek tragedy - wailing, gnashing teeth, agitated, crying out - the entire time. Inconsolable.

The staff was incredibly nice, patient, kind.  We were at great hospitals. Many nurses and doctors had family members with dementia and were truly kind and understanding.  But most hospitals are staffed razor thin. He could not be watched 24 hours a day and he needed to be.  We started hospice during the last visit - vowing NEVER AGAIN. 

As a result: 

I would rethink hospitalization at later stages. Especially if you don't have alot of support. Its excruciating, disorienting, exhausting (for everyone).  Truly one of the worst experiences I have ever gone through - and it wasn't even me who was the patient.  

PWD should not be left alone in the hospital if at all possible. Safety, disorientation, so many reasons.  It's not realistic to blame the hospital for the gaps - it was clear that hospitals are there to cure/fix what ails you.  They really aren't set up to see the whole person - if you have aspirational pneumonia, you are there to deal with that and get you out.  Your dementia is secondary, and only to be dealt with as it directly relates to the primary illness.  Unfortunately, for us, the dementia was ALWAYS first since it ruled his life at that point. 

sigh. hospitalizations. whew that was tough time. 


Posted: Friday, January 11, 2019 2:11 PM
Joined: 12/14/2011
Posts: 335

I don't have dementia, I spent a few days in our "best" hospital. While there I was:

Given drugs that caused immense stomach pain. Got my hands on a kindle, looked it up myself and it must be taken with food.... 

Maxed out on diltiazem and then told they would add a drip of cardizem. When I said hold up aren't those the same med and if you are already giving me the max orally can my body take more....the hospitalist looked at me and said,"oh, you could be right, I'll have to check with pharmacy."

Was given a different IV med only to have the second shift nurse come in and ask where the carrier fluid was. To which day nurse advised she didn't have a place to attach it....he then showed her how to add another box with IV bag to the poll...(BTW I don't even know what a carrier fluid is)

I could go on and on...nurses trying to give me meds I'm allergic to....hospitalist ordering  med I'm allergic to and nurse catching it....

I would never, never leave Jim in hospital with out someone being with him.... I don't know a lot of medical stuff but I do know how to ask questions and use a computer....and contact my doctor who I trust and my nurse niece who is a blessing of information..

Dementia adds a whole nother level to care....


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