Tonight's picture was taken in December of 2004. Mattie was two years old! My mom always sent Mattie a new Christmas sweater every year. Mattie would wear this sweater and pose for a photo that would be featured on the front of our family holiday cards! By age two, Mattie understood the whole notion of photos and once our tree was up, it was time to snap photos of Mattie. This was one of many taken that year. It wasn't the one featured on our card, but nonetheless, it was a cutie! When I look at this tree, I see the tree skirt and the ornaments. All of which I still have, it would never have dawned on me in 2004, that years after this photo was taken the only thing left of my family would be the tree skirt and ornaments.... Mattie and my marriage disappeared. As if they never existed. When I receive holiday cards in the mail and see happy faces, and children all grown up, I can't say it doesn't pain me. It leaves me asking why is everyone living their lives, and mine has been destroyed?
Quote of the day: I wish I could press rewind and bring you back — just for a moment. ~ Unknown
I truly did not know my dad would be discharged on Sunday! I thought I would have a few more days to get things done like grocery shopping and the Foundation's newsletter. Now I have time for nothing!
When I was married, I used to have Blanca come and help me clean our house every two weeks. I have known Blanca since 2008, when Mattie was diagnosed with cancer. My neighbor introduced her to me, and he felt I would need this help because I was rarely home, yet our apartment needed cleaning and organization. So I met Blanca when I was under great distress! She got to know Mattie! I can't tell you how she cried when he died and even now, when we reflect on him, it pains her with what I have and continue to face. Blanca and I have been through many ups and downs in each other's lives. Now given all I am juggling, I am lucky if I have Blanca over once every two months. I had scheduled her to come today and I did not want to switch dates, but I warned her I would be home and she would have to work around us.
So between cleaning going on (not being able to find a quiet space) and managing my dad, I truly thought I was going to jump out the window. My dad is in severe pain, and as I mentioned yesterday the hospital forgot to send a script into the pharmacy for pain meds. UNETHICAL on every level. His pain level is almost bordering on too hard to manage at home. He has lidocaine back patches, which are doing nothing, and I have a heating pad on his back! Given his brain bleed, he can't take Advil, which would do a whole lot more than Tylenol. There is something very, very depressing about being quarantined at home, with someone screaming in pain, disinterested in helping himself by moving his body and walking. I have noticed another level of cognitive decline in my dad with this hospitalization. I am hoping that with more time at home, and finding a way to address this muscle pain, that things will even out.
Then adding to this mix, a friend of the Foundation wanted to stop by to drop off a holiday donation. Very kind, but very difficult for me. I truly limit my socialization with the outside world. When I wonder why I do this, then a day like today happens, and I am reminded why! Why? Because I get to see my dysfunctional life through someone else's lens. I can see how my life scares people and also I can see people questioning..... why do you give so much to everyone, and care so little about yourself?!
In the midst of chaos today, I wrote a letter of complaint to the hospital. I felt things needed to be documented. I included it below in case you wanted to read it. It is now 9pm, and all I know is my own back is killing me from helping lift my dad and holding onto him so he doesn't fall. The next two days, he has doctor appointments. Which I also find hysterical! He was just released from the hospital and is in bad shape..... how do they expect this 90 year old to get to these appointments? The answer is THEY DON'T CARE! It is my problem and the only way I can transport him is by using Mattie's wheelchair. My dad is unable to walk very far without screaming in pain. Thank goodness I kept Mattie's wheelchair over all these years.... even now, Mattie helps his mom!
Letter to the hospital..........................
Dear ABC Patient Relations,
I am writing to express my concerns about my dad’s recent hospital admission. I am my father’s medical power of attorney. My dad, is 90 years old and has moderate stage dementia. He was admitted to your hospital, through the ER, on Sunday, December 7, with a brain bleed. Though we live outside the beltway, we consider ABC our medical home. This year alone, my dad was admitted to your hospital three times. I will bullet point the issues below and I would like to specifically know how each of these issues will be addressed.
- My dad was in Room 318, and on Sunday, December 7, my dad was transported to have an x-ray at 5pm. Typically I go with him for his scans, but I was unable to do so on that occasion. My dad was gone from his room for 2.5 hours and when I asked his nurse what was taking so long, she explained that there are not as many transporters available on the weekends. When my dad returned to his hospital room, he was very agitated, upset, and scared. When my mom and I asked him what happened and what was bothering him, he explained that the transporter dropped him off and he was left alone the whole time. In my dad’s mind, the transporter “died,” and he was going to be left in this “dungeon,” unable to get back to us. Since I was not with my dad, I do not know for certain what occurred, but it is clear to me that no one was present to alleviate his concerns. I am bringing this to your attention because patients who are vulnerable need much more oversight, support, and check-ins to avoid further confusion, anxiety, and fear. In fact, a chaperone should be available for such vulnerable patients. In any case, I would like your insight into how this can be prevented during future hospital visits.
- Throughout my dad’s admission, my mom and I were eager to get my dad placed in your Inpatient Rehab Center (IRC) once he was discharged from the hospital. My dad entered the hospital with no back pain, but with all the transfers from his bed to transporter beds and scanning tables, he developed significant muscle spasms and pain. Pain which he has returned home with, and we are having a very difficult time managing. While at the hospital, we shared our concerns with case management, nursing staff, doctors, and anyone who approached us about my dad’s care. Despite my dad making significant physical strides on Saturday, December 13, as he got out of bed, stood, and walked 15 feet with a physical therapist, he was still denied admission to the IRC. This was very upsetting for us to hear, and when we asked for the criteria used to make this decision, the only definitive answer we received was that from their perspective my dad would be unable to withstand three hours of therapy a day. We feel that this decision was made in haste and it was also very subjective. On Sunday, December 14, Theresa (case manager) entered my dad’s room and bluntly told us that my dad was denied placement into the IRC and instead presented us with two Skilled Nursing Facility (SNF) referrals. My mom and I proceeded to ask Theresa questions, explained to her that we were not interested in a SNF placement, and then wanted to know the specifics regarding why my dad was denied into the IRC. We were insistent, specifically because we saw the great progress he made on Saturday. Theresa did not like my tone; she did not like me questioning this decision and proceeded to walk into the hospital hallway and within minutes two hospital security guards were in my dad’s room. They escorted me out of his room, and wanted to talk with me, as Theresa implied that I was verbally abusive and threatening. I never cursed at Theresa; I never moved near her or touched her. I proceeded to tell both officers the medical ordeal we have been through these last seven days and shared that I am the full-time caregiver of both of my 90-year-old parents. The two officers immediately could recognize that I was just a distraught, overwhelmed, and passionate daughter and caregiver. If these two officers could assess this quickly, why couldn’t Theresa? It was completely inappropriate for her to call security on me. You may ask any of the nursing staff from 3A about me, as I was never abusive to a member of your staff, and in fact pulled 6–8-hour days in the room each day trying to help and meet my dad’s needs. I would like to make a formal complaint about Theresa. As a fellow licensed mental health provider, I view her behavior as totally out of line. Families of patients are going to get upset, angry, and advocate strongly. That is our role… to love, protect, and ensure the highest quality of care for our loved ones. It saddens me that Theresa showed no empathy, no compassion to me or my mom, and did not use intentional listening skills to form a connection with us, to help the situation and to help alleviate our stress. Finally, I would like an apology from Theresa, and I would also like some assurance that no other family is going to be wrongly accused by her.
- My next issue relates to discharge. During the discharge process, I requested that home health care orders (for PT and nursing) be sent to XYZ Home Health. When I called XYZ this morning, they said they received no notifications or orders from ABC. I then quickly contacted Dr. A's office and requested that the script be faxed over. I am juggling a lot with my dad’s full-time care and pain management. It would have been helpful if I did not need to do this extra legwork. In addition, when my dad was discharged, new medications were prescribed and sent to CVS. In the discharge orders it says that my dad should take Oxycodone. However, CVS never received a script for that pain medication. Given that my dad is in significant pain, how ethical is it to send a patient home without the needed pain medication? If that was not bad enough, the medical team prescribed insulin (a drug my dad has never taken at home prior to admission). CVS received the script for insulin, but no script for needles. How is a patient supposed to take insulin without the needles? I will be visiting my dad’s primary care physician on Wednesday and will be discussing whether insulin is necessary. However, I think these two oversights are significant enough to be mentioned as patients and their families rely on your medical team to discharge us with all the necessary medications needed to manage in-home care.
Thank you for your attention to these matters. I look forward to hearing from Patient Relations about these issues and the steps being taken to remedy each one.
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