I want to tell you a story. I want to tell you a story about how a new health care system could work. I want to tell my story of what happens when you make the person the center of the system and build systems to support them.   I know.   I have seen it work. I know that this could be possible for all of us, if we are willing to work for it.  Read on…. This is longer than usual, but it is a true story.

When I picked up my mother in May she had a black eye from a fall--the fourth or fifth in an adult family home that was chronically understaffed after it was sold to the new owner. That day I was moving my mom to a new home. She was 85 years old and had Alzheimer’s disease.  So, we discussed this with her doctor and we put her on an anti-anxiety medication to help make a difficult move easier. 

But, after I picked up mom and got her into the car, I realized with horror that the anti-anxiety meds had made her very relaxed and loopy—which meant I could not get her out of the car. I did not have the strength to lift her.  And she was too medicated to help out.  So, as I drove up to the adult day health center where we needed to admit her to the new program—I knew there were huge “No Parking” signs posted at the entrance because that’s where the vans dropped the clients off in the morning. Knowing I was not able to get my mother out of the car myself, I pulled up to the main entrance, knowing I was not supposed to park there. So, I was prepared for a huge fight. I knew I was not supposed to park there—but I also knew I could not get my mother out of the car by myself.

I parked just as all the vans were pulling up. I got out and then opened my mom’s car door when this huge NFL linebacker came storming out the door and I was into full Jedi Knight role, ready for a fight.  Then he said. “Stop! Don’t move. Don’t do a thing. We’ll get a wheelchair to help you and be right back!”

Help? Me?  What? No fight? So, he came back and three people helped mom into a wheel chair and took her to the examination room while I parked the car. That was just the beginning of one of the most rewarding health care experiences I had ever had for my mom and myself.

For the next two and a half hours, we met with the nurse, the social worker, her new doctor, an occupational therapist, because mom had dislocated her collar bone in one of her falls.  Then the med nurse came in to review mom’s medications.  This team not only went over mom’s medical history, they also asked me what she liked to do before her stroke and her Alzheimer’s disease.  I mentioned that she lived in Japan and loved Japanese things and they said one of their clients was Japanese and they arranged for them to sit together at lunch.   

Her doctor then turned to me and said, given your mother’s condition, I assume all you want for her now is comfort care, is that so. At which point I burst into tears and said yes.  Having fought another doctor who wanted her to have a colonoscopy for what might have been minor intestinal bleeding—a procedure neither she nor the staff could prepare for without hospitalization and would only cause her fear and anxiety. And a procedure to do what?  Have surgery to prolong a life she did not want—her greatest fear was dying from Alzheimer’s and there was no way she would want to prolong that condition. So, now for the first time, I felt my mother and I had a partner in the doctor.  Rather than feeling like I was putting a gun to my mother’s head.

When I signed all the papers with the doctor he left and Becky, mom’s social worker took me outside in the hall and said “We know it’s tough being a care giver. How are you doing? Do you have good support?” At which point I burst into tears; said yes and that I was fine and had a great support network. I told her that I usually don’t burst out crying, and that I can cope pretty well until someone sympathizes with me. She gave me hug and a tissue and we went back in the room.

After, Carol, the nurse and Becky left, the occupational nurse  put support socks on mom and checked the meds, at which point, Carol returned and said they were all done—that they would feed mom some lunch and the van would take her to her home, with an escort to help her, so she would not be unaccompanied.

So, I told Carol I would high tail it so I could move mom’s things to the new family home before mom got there. Carol looked at me and said—“I understand that you do fine until someone sympathizes with you. Is that true?”  I said yes. Carol said—“Then get out of here.” 

What does this experience mean?  These people listened to my mom, listened to me, took the time to get to know us as people, and even talked to each other about us.  Becky told Carol what I needed to get through this trying time and they respected that and acted on it.

What this meant, is that by the time of my mother’s death, all my mother’s and my wishes were respected and granted. And they were active advocates on our behalf.

I got a call at work on Thursday from the Karen, mom’s new nurse,  who said that mom had stopped eating on Monday, stopped swallowing liquids on Tuesday; Karen had seen her on Wednesday.  Karen called me to say because of this, my mother’s end was  very near---we are talking days, not weeks, she said. She arranged for me to meet the Hospice nurse on Friday morning at mom’s family home. The family home they said it was fine with them to have my mother stay there rather than moving her to a hospice facility or a hospital.  Which means she could die in peace where she was used to living with what were left of her things—pictures of friends, her husband and grandson.   

Karen had also called the minister and told me he would try to get to see mom, and if nothing else, he would call her by phone so she could hear his prayers.  Becky called to see if I was alright and if I needed anything.  And, I, of course, was in shock because while you know your mother is declining—the sudden turn of events was a surprise.  I told her I was fine, and did not have time to talk because I had a major event I had to do that night and which I could not cancel.  She said fine and that we could talk on Friday.  And then, the doctor called. He told what they were going to do clinically and why; the meds they had ordered and why; what would physically happen to my mother and the sounds I would hear and what they meant.  With all of this, no matter how much shock I was in, I knew what to expect and why.  And, I knew I had an active team dedicated to giving my mother as much dignity and comfort as possible in passing.

About an hour later, I called Becky back in a panic.  I had made no arrangements with a funeral home. She faxed me information about the People’s Memorial Association, and I wrote a check and got it in the mail that day. The People’s Memorial Association has an arrangement with a funeral home for cremations. Dad may have made those arrangements in California; but I did not have that information readily and we are in Washington state.  Finally, done. Last detail in place.

Friday I meet with the hospice nurse and we went over all that needs to be done. She and Karen gave Paula, mom’s caregiver and home owner, and me the 24 hour number—and we were told not to call 911!! They have to try to resuscitate, she said. Just call hospice and they will come out and make all the arrangements. I went back to the office to take care of some financial matters and returned to Paula’s at 5:30 to find the minister there praying over my mom.  He left at 6:3O. I sat with mom from then until she breathed her last at 9:30 pm.   

I had time with her.  I got to say goodbye.  I told her I loved her and forgave her for the hurtful things she did to me, as I knew she forgave me for the hurtful things I did to her. She was headstrong; and I was equally headstrong way, but in a different way.  But over the last six years since my father died, we finally found some peace and enjoyment of each other.

Everything happened the way I was told it would happen with my mom. Paula and her son were with me and mom when she passed.  We hugged and cried and wailed. We spent time together after, talking about her, and comforted each other, for they lost her as much as I lost her.  We finally called the hospice nurse, who called the mortuary.

Everything worked as all the participants said it would.  This is how the end of life should be. This is how health care could be. Providence clearly thought the patient was the most important thing and built services around that to support my mother. 

Did all this require some up front work and time? Yes.  Was it a good investment—most certainly!  Did it save time and money down the road? Yes. Did it give the family peace of mind and comfort? Most certainly! What price can we put on that?  All I know is that I had a team that was working for my mom, and me and wanted what she wanted and what was best for her.

This is what health care could be if you put the patient at the center; this is what health care could be like if you had a system to support a person’s health; this is a system that is actually working in Washington state. 

This is what we could have if we put our minds to it. CodeBlueNow! is working to make this kind of system possible.  Pass this on and sign on now.

More later, Kathleen