Tonight's picture was taken in December of 2004. Mattie was two and a half years old and by that time, had some understanding about Christmas. As packages arrived for Mattie from family, I would store them under our staircase. But as you can see, both Patches and Mattie really wanted to explore those boxes! Patches was an amazing cat and truly she just got it.... as soon as we took Mattie home after he was born, she knew he was precious cargo! Mattie learned how to love and care for animals from Patches, and she was a great teacher! When Mattie was sick with cancer and in the hospital, he longed for Patches to visit. The hospital never allowed that to happen, even as it was his last request while dying. Something I will NEVER forget.
Quote of the day: If I had a flower for every time I thought of you … I could walk through my garden forever. Claudia Adrienne Grandi
The past three nights, I have had very vivid dreams. Typically I am so exhausted that I go to sleep and wake up and have no memory of anything in between. But that wasn't true the last three nights. Each night, in some shape or form I had a dialogue with my former husband. Perhaps I will discuss this in another blog posting, but tonight, I wanted to share my horrific day! I truly wonder about the state of our healthcare system, and God forbid you are in the system without a family advocate..... because I can assure you the system is about numbers, data, and insurance reimbursement! If you don't meet numbers and insurance won't cover a treatment or stay, you will be shown the door! Even if it isn't in your best interest as a patient, and don't get me started about the family caregiver. The system cares even less about us!!!
I would like to know why hospitals are so eager to discharge older adults and send them to a Skilled Nursing Facility (SNF, or plain and simple a NURSING HOME). With the frequency of their referrals to SNFs, you would think there is a financial incentive involved for the hospitals. Other than by getting rid of you, they check the box off that they helped a patient and now freed up a bed for another paying customer! Why was today awful? Because I had the unfortunate opportunity to meet Theresa, a case manager. She wasn't the case manager I had been working with all week. The original case manager doesn't work on the weekends, so I got Theresa instead. Theresa came in with a total attitude and said my dad was not accepted into the hospital acute rehab program and instead she presented me with a print out of two nursing homes willing to take my dad for rehabilitation. When my mom and I pushed back at her, trying to get specifics about why my dad was denied, she kept reiterating that we were already told why he was denied! TRUST me, I don't have dementia! No one reviewed the criteria with me as to why specifically my dad was denied. All they tell me is that my dad doesn't have the stamina for three hours of therapy a day! That is ridiculous, specifically since therapy is NOT back to back in acute rehab, there is time in between to rest! He could do acute rehab, but they weren't willing to give him a chance!
Yesterday's physical therapy session, in my presence, went very well! That is because I know he can push through the muscle pain and I also know what he is capable of doing! I am quite certain if I had been present for the other physical therapy evaluations (which always happened before 9am!), my dad would have qualified for rehab today. But without me present, the therapists were hesitant to move him, as he moans and screams in pain. Part of it is naturally my dad and part of it is his dementia. He can perseverate on certain things and then blow them way out of proportion. They would know this, if they even consulted with me throughout the week. So note to self.... in the future, with any other hospital admission, I will demand that I MUST be present for all therapy sessions! Otherwise, we will face exactly what happened today. They see a 90 year old with moderate dementia, and truly the system writes him off. In fact, the hospitalist said to me at one point.... maybe your dad doesn't want to do the work and rehabilitate. Maybe he just wants to sit, watch TV all day, and relax. I am sorry...... if that is what this doctor wishes for his own dad at age 90, good for him, but my dad is capable of having a fuller quality of life than this doctor imagines.
Any case, back to Theresa! Theresa did not like my tone when I asked for clarity about the rehab center denial and literally she went out into the hallway and called hospital security. I KID YOU NOT! Within minutes two very large police officers were in the room and escorted me out of the room. They then interrogated me in the hallway! I SWEAR I can't make this stuff up! They wanted my perspective on what was happening! I explained the whole situation calmly. By the time I was finished with them, they were on my side and gave the social worker a talking to! I under no circumstance ever threatened her, never cursed, and never moved toward her! I disagreed with her, and she did not like that! Seriously if she can't understand the anxiety, fear, and anger of a family caregiver regarding the poor discharge process of a loved one, then I think she needs to find another line of work! Working with something that doesn't have a pulse to be very specific! In all my life, NO ONE has ever called security on me, and as I told the officers my role is to advocate for my dad and when I see an injustice, I speak up and confront it. They understood immediately!
So bottom line, I decided to discharge my dad from the hospital tonight and I took him home. He would decline at a rapid pace in a nursing home, not getting the attention he needed, and also given little to no movement each day. He will get more movement from me and also be in a non-clinical setting, which I think is more normalizing. Of course the burden and work are now on me. On discharge they reviewed all the new medications my dad was prescribed. One of which was insulin. Prior to hospitalization, my dad wasn't taking insulin, only an oral med. When I got to the pharmacy tonight, Stacey, our wonderful pharmacist said.... they did not prescribe needles to go with the insulin! She told me that if I paid for needles out of pocket that will be over $50, but with a script it is fully covered! DEAR GOD HOW STUPID ARE THESE PEOPLE!? While at the pharmacy, I contacted my dad's primary care doctor. I told him I wasn't getting the insulin and why! Why? Because in the hospital oral diabetes meds are not given to patients. Instead, every patient with diabetes gets insulin. However, now that my dad is home, the hospital wanted him to take his oral med and the insulin! I questioned this.... after all they never gave him both in the hospital and I never gave him both at home before! How do they know that this combination of drugs won't produce hypoglycemia (low blood sugar)? My dad's doctor agreed with me and so for now, we are holding off on insulin, until I see the primary care doctor this week. On top of which the hospital prescribed pain meds for my dad, but guess what??? They never sent a script to the pharmacy for it! This level of incompetence is too much for my mind and heart to handle tonight!
It is now 9:20pm. My dad had dinner, I applied his pain patches on his back and attempted to take him up the stairs to bed. I know that sounds aggressive, but I want him to get back into the routine and fully use his body. Do note, that he has NO MEMORY, NONE, of being in the hospital this week or being discharged tonight. This actually works in my favor, because for all my dad knows, he has been doing this for the last week. Meaning, that he wasn't opposed to going upstairs. My goal was to see how he did on the first few steps. If I deemed him unsafe, I would have aborted the process. But guess what, with direction, and a couple of pauses, he got upstairs and into bed. I am very proud of him and my hope is he continues to make progress. His in-home care team (PT and nurse) will begin once again this week, and I am so thankful I already have these professionals to turn to, as they have worked with us now for two years!
