Writing this blog soon after the previous one, but some may still be wading in deep water, and there are a few more points I want to add to help you avoid the sinkholes.  Also, when I return from Israel, I will have 7 year old granddaughter Libby for the rest of the summer, so I may have trouble organizing my thoughts as well!  When I met with the staff at The Piper, they said I was bringing up things they had not thought of before.  So I hope this blog will help you as you care for a loved one or even yourself.
A couple of days after the incident I related in the last blog, I locked myself out of  the house for the first time in my life!  Fortunately my wonderful neighbor Mary was home and she called a locksmith.  While we were sitting on her deck enjoying a cup of coffee while we waited for the locksmith, I could envision The Piper needing me, and calling on both of the phones that were locked in the house.  When I got in the house about an hour later, yes, every phone was lit up with several messages.  They were from The Piper, but also from daughter Valerie, since they had also called her when they couldn't reach me.  Bob had gotten up from his wheelchair and had fallen and had 2 gashes on his head.  It is their protocol and I think everyone else's protocol that when there is a head injury they are required to take the resident to the hospital to check for subdural hematoma.   But Steve, the nurse I am on a first name basis with, told me he figured he knew what my wish would be since he was on when the other incident occurred, but he had to hear me say it.   I totally understand this policy in this litigious society.  But Valerie had asked what Bob was doing, and they said he was sitting there happily, so we both said, no, don't take him to the hospital.
Which brings me to something you need to be aware of.  In our county, there is a wonderful ambulance service, Johnson County Medact, which was started by, and originally trained by, SMMC doctors.  They have a form that you fill out and keep on your refrigerator called "file of life."  If they are called to your home, and you are unresponsive, they look for that paper.  It tells which hospital you would like to be taken to, and where your DNR papers are in your house.  If you call 911 and ask for an ambulance, and it is not an emergency, please tell them it is for "transport only" if you do want to be taken to the hospital and have the DNR papers ready to give them.  Otherwise they are required to resuscitate you in the ambulance if need be.  Another service they provide is to help pick people up off the floor at home if they have fallen.  It is better to call them to do it for you if you are caring for a loved one, so you don't hurt your back trying to pick them up, and also they can assess for injury before moving a person.
One more pitfall I am hearing about that I want to mention is that when you go to a hospital (even an emergency room), you go where your insurance covers your care.  But there is a potential for "out of network" doctors to be working there.  I have heard of it occurring in the ED, and also anesthesia departments, and of course you don't think to ask, especially when there is an emergency.  If it happens to you, dispute the bill (which will be much higher of course).  Another thing The Piper and I have talked about is how to identify the residents that are DNRs.  And  not all the residents in the memory care units are DNRs.  They have talked about putting a sign in the room, but what happens if the arrest happens in the common areas?  Now the list of DNRs is kept in a notebook, and all staff is to be oriented as to where it is.  But I know in the heat of the moment, things get forgotten.  All nurses say for them personally, it will be tattooed on their chest.  But for me that is not good enough.  Clothes aren't always removed when resuscitation is started, so I am going to have it tattooed on my forehead....Anyway, for Bob, I went to the hospital and got a bracelet for him.  It has changed since I worked at the hospital and now is a different color and says DNR/AND.  I didn't know what AND stands for, and neither did a lot of the hospital staff, I found out!  But it stands for Allow Natural Death.  Then I wish facilities had a form to fill out about what the family wants to be called for, or what they want their family member taken to the hospital for.  The Piper does not have one, so I wrote one out myself and signed it.  At first I just wrote to take him to the hospital for a fractured hip or other bone.  Then I got to thinking of all the other scenarios that could cause severe pain--kidney stones (Bob has had 2 of them) and gall stones, etc, etc!  So I added the words "Or anything causing severe pain."  But now that is kind of a moot form, since Crossroads Hospice is on board.  I cannot say enough good about hospice care.  I know it has a negative connotation for some, as they think end of life has to be within a certain period of time after hospice care is implemented.  But they reevaluate every 90 days, and Bob could potentially come off hospice care and then be readmitted.  But with the steady decline that is common with dementia patients, they can requalify easily for the most part, and stay on hospice care for a longer period of time.  Hospice is the first one now called for any need that Bob has, and they are coming out to see him frequently and are also helping with his physical care, as well as medical care.  The staff from The Piper and Crossroads Hospice and I had a family meeting, so everything is in place to work together for Bob's very best care.  They call me with a report after every visit.
I posted this to Facebook, but I will repeat it here for those of you not on Facebook (and because I really like it).
The journey of dementia is a journey like no other.
Dementia makes you realize that there's no time to waste.
Each moment is precious, a treasure in its own way.
We all know the last chapter in the book.
Dementia taught me that all any of us really has is today.
---Leanne Charmes, Memory People

Live life, and each moment, to the fullest!
Betty