Tuesday, February 9, 2016

February 9, 2016 in Palm Desert

Hello everyone, 

I need to share some information, but before I do, I wish to give you some background.  If you followed our blog of our travels last year, you know we went back to New York state in July.  Our first stop was at the Elks lodge in Niagara Falls.  We went there because we wanted to visit Jim's older brother Norman, who was living in an apartment in a high rise building in Buffalo.  Since he likes to visit the large Indian Casino in Niagara Falls, he asked us to pick him up there instead of at his apartment.  Later that afternoon, we drove him back home, but we didn't go in.  It was a beautiful day, and we had a really nice time together.  

Since he does not have a computer, and isn't always home when we call, we sent him post cards and notes of the places we visited, and sometimes we were able to reach him by phone to chat.  We had such a chat with him sometime around the middle of September.  

We were unable to reach him in October, but since he goes out most days, we weren't too concerned.  Then came November, and colder weather, and we still had not heard from him.  We sent notes and left messages on his phone, but he didn't call back.  We couldn't find a phone listing for his apartment building to reach the manager, so we tried calling hospitals in the area.  After many attempts, we finally called the local police and asked them to go to his apartment to check on him.  Later that day they called us back and said that his neighbor told them he was taken to Erie County Medical Center in October.  When I called there, they said he HAD been there, but had since been discharged, and they could not tell me where he went to because of HIPPA regulations.

  Later on I called the police again, and they got me a phone number for the manager of his apartment building.  When I finally reached her, she said he had been back home, but became disoriented, and was walking the halls in his bare feet, and didn't know where he was, so he was taken back to ECMC.   It took several more calls, but finally we did reach someone who would verify that he was there.  I tried to get information from his nurse, but because of strict HIPPA laws concerning a patient's privacy rights, she was very reluctant to say anything more than that he was there.  I asked if there was any way we could talk to him on the phone.  She tried to say that he was suffering from dementia and his speech was very garbled so it would be difficult to understand anything he said.   I explained to her that his hearing is not good, and due to probably having a small stroke years ago, his speech has been somewhat garbled for a long time, but we could still understand him.  She put a phone in his room and we talked with him, and he seemed pretty much himself.  

Later he was released from there, so when we tried to call him again in a week or ten days, he was gone, and again, no one would tell us where he went.  This all happened in December, and throughout January we were again trying to reach him at his apartment or through contact with his apartment manager, Diana, without any success.  A couple weeks ago, when we tried to call his phone, we got a recorded message that the phone was disconnected or no longer in service!  This was of course very upsetting as we didn't know if he had a new phone or what, but we couldn't reach him, and after many tries, we still had not reached Diana. 

Yesterday Diana called me and asked if we had talked to Norm lately.  I told her  no, and shared with her that we had gotten the message that his phone was not in service,and that ECMC would not tell us where he was sent after he was released in December.  She said he was now two months behind in his rent, and she needed to find out if he would be coming back to the apartment or not.  I told her I didn't know anything about that.  

This morning at 6:15 am our time, she called me and gave me the name and phone number of the nursing and rehab facility he had been transferred to.  We called there, and after waiting for his social worker to talk to him to find out if he wanted information given out to us, she talked with me at length about his condition and treatments he was receiving there.  She also gave me the phone number for his room,but we still have not caught up with him there.  She said he cannot be released to go home alone as he needs 24 hour a day care and supervision.  They will most likely try to find him an assisted living care facility to send him to when he is ready to leave there. 

I know this has been a very long account, but I really want each of you to understand all we went through trying to track him down.  We hope to save someone out there from going through all we have been through since we got back here to California.  We could not afford to drive, or fly back to Buffalo to try to find him.  Even if we had gone, we didn't know where to look.  We didn't have a name or phone number of a close friend or contact to call to try to find out what had happened to him.  HIPPA laws are a good thing, but for us proved to be a major hurdle in trying to reach Norm.  

Please plan ahead!  None of us know when we might become ill or incapacitated, and then it might be too late.  Make a Living Will or a Durable Power of Attorney for Health care and/or financial decisions.  Carry a copy with you at all times, as well as a list of people to be called in the event of injury or illness.  You can put it on your cell phone under the listing of ICE which stands for:
 In Case of Emergency.  I have three numbers listed there.  
If you need special medical care, have a Medic Alert Bracelet made, and wear it.   Maybe it could even have a contact person's phone number on the back of it.  

I wouldn't wish this stressful situation we've been through on anyone.  Please make this a New Year's resolution to put your affairs in order, so someone else doesn't have to do it for you.  And if you have strong views on what care you do or do NOT want done for you, spell it out.  Don't leave others to guess what you would want.

That's all for now.  Take care and stay well.  :o)  


  1. Good advice. ICE...contact Jan. I've got the forms for advanced directives, but have not filled them out. Jan has my holographic will in her safe.

  2. If you have any MORE suggestions, please share with me so I can add them to this.

  3. You couldn't be more right. Working in the ER I see it all the time, people with no wills or power of atty. They get stuck. In the ER unable to communicate and we can't give family any info. The HIPPA laws are great for protecting our rights but at the same time can be very restrictive. I don't know about NY but in California if you are a psych patient there will be no information given out for any reason to anyone. I am sorry you went thru so much to find Norm. I know how awful it is. We went thru something similar a long time ago with my grandfather. Hopefully all is well now. Love you lots.

  4. Cindy, thank you for this reply. To you and anyone else, if you have any more suggestions I should have included, please let me know so I can share them with others. In advance, thanks to one and all.