The brilliant red Poinsettia is on the table, Christmas card beside it. Visitors come and go bringing hugs and Christmas cheer. There is turkey, stuffing and pumpkin pie in the dining room. In the background, I hear the sound of vintage 1949 Bing Crosby filling the air with “I’ll Be Home for Christmas,” and with all my heart I wish we were.
But we’re not – we’re at the hospital for Christmas. The table decorated with Poinsettia and Christmas cards is a bedside hospital tray table. The visitors are wonderful strangers who come bearing therapy dogs, cards and messages of good will. The dining room isn’t our beautifully decorated one with Mom’s silver…it’s the hospital cafeteria. And Dad has been here for almost a week.
It started weeks ago when he began itching. All over. Terribly uncomfortable, the doctor put him on a dose of Prednisone and some anti-itch medicine, which made him completely loopy, talking gibberish, and had to be discontinued. A week later, still itching, we went back and got another round of Prednisone, an anti fungal medication, and antibiotic for sinus infection. Still itching a week later, things got worse: he began constantly going to the bathroom, without much in the way of results. By last Sunday he was very, very confused and miserable.The confusion is always a clue there might be a urinary tract infection in older adults, so I took him to the emergency room on Monday morning.
He got increasingly upset as the day went on as he tried to go to bathroom and couldn’t understand the portable toilet. He was decidedly not himself – he repeatedly raised his voice at me in his frustration and confusion. After about 6 hours I broke down in tears, and he comforted me and gave me a kiss on the cheek – my sweet Daddy once again. But that was followed immediately by “but I need to go to the toilet – NOW!” as he was sitting on the portable toilet. This kind of personality change and agitation is heartbreaking and leaves us caregivers feeling so helpless, not to mention exhausted.
A miserable 8 hours later he was admitted – with no answers. No doctor even physically examined him for over 24 hours after I brought him to the hospital. Only tests had been done. How is that possible? It happens all the time. Since then he has been diagnosed with urine retention, enlarged prostate, bowel impaction, swallowing problems as a result of having Zenkers Diverticulum (a pouch in the esophagus), sinus infection, elevated liver enzymes (from the antifungal medication)…and then he developed pneumonia (either from aspirating food into his lungs because of the Zenkers Diverticulum, or from being exposed and vulnerable in the hospital.)
As I suspected, the confusion began to clear as the bladder was emptied and bowels cleared – a testimony to the fact that we caregivers should always look for medical issues – especially urinary tract infections (UTI) - when confusion or other dementia symptoms suddenly worsen in older adults. Never assume it’s just “a sudden downturn in dementia” (as one doctor tried to tell me.) Often confusion is the only symptom of a UTI in older adults.
But before it got better, the hospital nurses said they would physically restrain him if we didn’t spend the night in his room and take care of him. They said the hospital won’t provide a “sitter” or more care and they couldn’t be bothered (my words) with him constantly wanting to go to the bathroom and getting agitated. So my sister took the first night, but before she understood what what happening, they gave him a shot of Ziprasidone (Geodon) which is used intramuscularly to calm “dementia-related psychoses”. Really? He was no where near psychoses, believe me.
When he was admitted I told the nurses very specifically that I wouldn’t allow any chemical restraints or physical restraints, and that I wanted to be consulted before any new medications were given (I have power of attorney.) He had reacted negatively to the anti-itch medication, which is also used to sedate those with dementia who get agitated. And the same thing happened this time – he reacted in the opposite way that it was intended, and was then very confused for 2 or 3 days afterwards. You can bet I had a talk with his doctor, who told me that only doctors can order no sedation or restraints so she would put it in the chart – she wasn’t even aware he had been given the medication, as an on-call doctor who hadn’t even seen him had given the order at the request of the nurse. Note to self: in future tell doctor to put the standing order “not chemical or physical restraints” in his chart first thing – don’t trust that telling the nurse at admission is enough.
It is discouraging to think that as hard as we advocate, the word “dementia” in a patient’s chart often produces different treatment and jumping to conclusions, and unnecessary treatment that leads to a worsening of symptoms.
So here we are, making the best of Christmas in a hospital, and looking for things to feel grateful about. And there are many: first of all – he is better; progress is being made even if it’s small steps. Also he was moved to a much larger room last night so that when the rest of the family gathered in his room today we all fit into the room comfortably. The hospital provided free Christmas dinner for all families today as well!
Best of all, the house supervisor allowed us to bring Jackson to visit Daddy today. It was the best Christmas present ever. When Jackson came into the room in his Santa outfit and jumped up on Daddy’s lap, Daddy was the most oriented he’s been all week. “We’re together again!” he said, smiling like a kid who got a puppy for Christmas. He has been more calm and contented ever since. Bless the wonderful hospital staff who allowed the visit.
We try to focus on the fact that Christmas is about love. It’s about the gathering of those we love – wherever that gathering may be. I have to admit I’m sad to spend Christmas in the hospital sleeping on a cot next to my Dad. It’s not exactly what I envisioned for this year after all that Mom has been through; we were looking forward to celebrating. But at the same time, I’m so glad I am able to be here to give Daddy the greatest gift of all – love and care.