What do I do now?
In 2004 our dad was diagnosed with Alzheimer’s. In June, 2007 he moved across the state to live with me and my sister (his only children). He did fairly well during this time. He walked slowly with his walker (bad bone-on-bone left knee); fed himself (took him awhile-had great appetite); when clothes were picked out, he dressed himself (went to elastic waist pants and no button shirts 2 years earlier); and could go to the bathroom by himself (some accidents at night but not bad). Of course his memory and communication abilities had decreased during the 6 years he lived with us but it wasn’t bad. He still had his sense of humor and we laughed often.
On May 9, 2013, he suffered a brain bleed stroke. He was hospitalized for a week and then in a rehabilitation facility for 5 weeks. The stroke affected his vision (had a blind spot to his left with some depth perception issues); he was unable stand and support his weight and couldn’t walk. He could feed himself “hand” food but was still struggling with silverware, he could touch his face with both hands, and he could sit in a wheelchair and kick his feet up some and do a little marching in his chair. His communication was the same after the stroke, maybe even a little better. We had been given a discharge date in one more week.
He was “fine” after I visited him on Thursday. When I got there on Friday evening, there was a nurse by his side, he was on oxygen and unresponsive. The LPN said he had a 103 temperature, critically low oxygen level on his left hand and she was just getting ready to call me. God took dad home to heaven 20 minutes after I got there. The LPN nurse pronounced him as there was no doctor in the facility (even on a regular basis). I couldn’t believe it. I went through the motions in a fog. After the funeral I called to ask what they thought had happened. The administration nurse said things were fine when she left at 4:00pm but when she returned around 7:30 there had been a change in his condition. We told her no one called to tell us he was having problems she said that was the staff’s responsibility. When we asked what she thought had happened, she said she needed to go to a meeting, took our number and said she would call us back. She never did. That wasn’t surprising; communication was not one of their strengths in the 5 weeks he was there. We were looking forward to dad getting out of there and back home.
When we got the death certificate in mid July, 2 weeks after the funeral, it listed the cause of death as the brain bleed stroke. How can that be when he lived 6 weeks after the stroke? I called the rehab facility and left a message to have the doctor who listed the cause of death to call me. He has not called. Since the funeral I sleep a lot and when I’m not, I’m thinking about what could have happened. Why won’t they return our calls? Should I accept the cause of death and drop it? Should I try to have the cause of death changed? Nothing will bring him back. I miss him. 6 years of 24/7 care -- I don’t know what to do. I’m lost
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To get some answers, I'd do the following:
1) Contact your local ombudsman so they can investigate
2) Contact your father's physician to inquire about your father's health
3) Contact the Rehab CEO and ask why the staff did not contact you
4) Write an online review of the rehab facility on Yelp and other sites
But. She got to go before she became bedridden. She had met her grandchildren. From a long conversation I had with her the night before, she was in a good place emotionally. There's a song about sliding into heaven on mutton grease. (Woody Guthrie) (I love Google.) Her transition was quick and I hope, relatively painless.
It's hard whenever you lose them. Do whatever follow-up you want to. (The only thing I did was to have a conversation with her doctor, which was somewhat satisfying.) Sue the bastards, if you want. It does sound like there has been some "dropping of the ball" at the least. At the end, I think you will always have questions. But you will also have your memories. That's what is most important.
I'd say focus on your time with your dad and the love and laughter you shared. That is your blessing - that you had that time together. His passing was inevitable, as it is with all of us. He was loved and had your support and care until the end. That's the most that any of us can ask for, in my humble opinion.
Your caregiving story is somewhat similar to mine. I moved my dad with Alzheimer's cross-country to live with me in July 2010. His mental and physical decline was very gradual, but progressive, especially the last few months. Dad passed away in hospital on July 11th, just 5 days after being admitted for a fall at home.
As painful and sad as it is, find comfort in knowing that you gave him the best remaining years of his life. He got to spend it with his two children. No where else in the world would he have had the love, care and devotion that he received while living with you and your sister. You said he still had his sense of humor and you laughed often - how wonderful is that - my dad made me laugh every single day with the humorous things he used to say. Recalling the funny stuff is what's helping me get through losing him.
Again, my sincere condolences, please keep us posted on how you're doing.
So, the second issue would be to receive some sort of satisfaction regarding information around the time of his death. As almost all administrative instructions will tell you, "phone calls do not preserve your rights". As this is a difficult time for you, I realize that suggesting doing this is adding another layer of responsibility you may not feel like I'm taking it this time. However, for some it is therapeutic and can give one back a sense of being responsible and taking charge, so I'm going to suggest it anyway. How you choose to pursue it is of course up to you.
Start by writing down a narrative, kind of like a diary or journal, of exactly what happened to you, in terms of your dad, with times and eights and who you contacted. Then, as if you're writing a story as a newspaper reporter, start filling in the blanks: who should have called you, who should have returned your calls, what should they have informed you about, etc. AND include these questions as any good reporter would. When you have finished, I think of this is a rough draft. Now, review it, edit, and polish it into the best letter of your ability.
Make a decision about who are the most important people to FIRST receive your completed letter. Don't plan at this stage send it to everyone in the world, just the ones that would be appropriate to answer your investigative questions (you might want to consider, in a very friendly, pleasant and non-threatening way, suggesting a time frame in which you would "appreciate" that they get back to you with the answers. If they don't answer you, or come back with some inadequate mumbo jumbo, your well thought out and properly written letter now becomes the basis for you to contact many different authorities as an alert and a complaint about your dads and your treatment. This could include Medicare, the nursing home licensing authority, the county and state attorneys general, the long term care mbudsman, etc. You get the idea. You are giving them written notice to respond which they haven't done by verbal request (don't forget to include the verbal request information in your narrative and letter), and then you are likely going to take it further by reporting them. They are already in trouble and they don't even know it yet.
By splitting your approach into these two different issues, you are continuing to take care of an honor your father even after his passing as well as guarantee you have made your best efforts to be sure that this place and these people are not able to do this to some other poor unsuspecting victim.