Friday, March 21, 2014

Another Adventure at the Hospital with Dad

Dad is stuck in the hospital gerichair.
Photo by Pam Stephan
Last week, Dad was sluggish, coughing, sneezing, and dropping off to sleep in the afternoons. I thought it was because of seasonal allergies, which he has in spades. But when he suddenly got extra confused and unhappy, I checked his temperature and found he had a fever. Along with that, his blood pressure was climbing. His attention span shrank and he had difficulty playing dominoes - a sure sign of distress. I called his home healthcare nurse and reported his fever and blood pressure numbers. The nurse got concerned and told us to head for the walk-in clinic or else go to the Emergency Room

I hate to say this, but we are getting really familiar with our local Emergency Room. In the last 10 weeks, we had been there 4 times and 3 of those ER trips were for Dad. He had a couple of bad falls, then my husband got an overwhelming case of flu. However, all this experience had taught us to stay prepared for emergencies. We keep a bag packed for Dad, with a complete change of clothes. I gathered up my iPad (which has loads of notes and medical info stored on it) and slipped it into a bag with snacks, newspaper, and a large print Reader's Digest. My husband packed a book to read and brought our jackets. I always bring our own blanket and a small pillow for Dad, because the ER blankets are thin, while those rooms are consistently cold. 

Instead of saying to Dad, "You need to go to the hospital," I used a phrase that always gets him agreeable and moving. Since we hadn't eaten supper yet, I asked him, "Do you want to go get a bean?" I figured that he might wind up having supper in the ER (it has happened before) so technically, I wasn't fibbing. He got up and sat in the car agreeably, and off we went. 

Dad doesn't really like hospitals, but he enjoys the attention he gets from the nurses. He endures the prick of needles and the stickiness of heart monitor leads. He will take pills if a pretty nurse says they will make him feel better. But when they bring out the urinal jug and ask for a sample, that's when he refuses. This time, he got so indignant and fought back so strongly that I ran weeping out of the room. We never got a urine sample, everybody gave up. He was diagnosed with an upper respiratory infection (URI) and sent to a room on the third floor

The Storage Room
This part of the hospital was old and the room had originally been designed for two beds. Now there was only one bed, with an assortment of 4 tray tables, 5 wastebaskets, two hard guest chairs, a chaise designed to become a cot, and a gerichair. There was barely room to walk around. It seemed as if this room had become a storage place for cast-off items. As soon as Dad was settled in the bed, he declared that he was ready to leave. It took some persuasion to keep him from jumping up. My husband left to check on our dogs and to gather a few more items. Respiratory nurses came by and started treatments on Dad - these lasted at intervals until 1 a.m. All of us tried to sleep but it became impossible. 

The Gerichair
 The next day, Dad was still weak from his fever. He wanted to visit the bathroom alone. Nurses gathered around to help and he wanted none of that! An argument ensued, we agreed to leave Dad to his own devices. Within about 3 seconds, BAM! he wound up on the floor. Because I would not consent to restraints on his bed, the staff put him the gerichair for the rest of the day! He could not get up, walk around, control the chair, or adjust the angle of the back. 

The All-Knowing Hospitalist
 Later, when an unfamiliar doctor came in, asking questions that should have been answered by Dad's medical chart, I asked for a diagnosis and was told that Dad had quite suddenly developed Parkinson's Disease! Since Dad had been pipelining  a powerful steroid - Prednisone, well known to make patients wired and shaky - I suggested that medication was the issue. My medically uncertified opinion was dismissed and we were told to see a neurologist in 72 hours. (We still haven't done that.)

Dad and I Break Jail
So, after the night in the Storage Room, the Day of the Gerichair, and the All-Knowing Hospitalist visit, I pressed for a discharge. We began packing and escaped as soon as all the needles and sticky pads from the heart monitor had been removed. 

As I write this, it is four days after this trip to the hospital. I have slept each night in Dad's bedside recliner, helping him to the bathroom 2-3 times a night. Because of the fever and the enforced inactivity during his hospital stay, he is still somewhat weak. He can't afford to have another fall and neither can I endure another ER visit again soon. So we vigilantly guard him, stay on schedule with all the pills, and await improvement. And if we have to go back to the hospital, I will beg the doctor to keep us off of the Third Floor!

Monday, March 10, 2014

A Diagnosis of Dementia Changed My Dad's Life, And Mine

Pam, Dad, and Toto the Wonder Dog
Photo by Karl D. Stephan

Dad has dementia. In his case, that means that his short term memory has been fading away - in his case, slowly over the last 8 years, or maybe longer.

At first, he needed help with paying his bills, reading his bank statements, and remembering to keep appointments. He still drove himself around his hometown, did his own grooming, handled his own prescriptions, got his own meals, and maintained his house, vehicles, and yard. When we played dominoes, he cleaned up the scorecard, all the while saying he wasn't playing that well.

But if you asked him what he had for supper, he couldn't recall the menu. He sometimes mowed the grass more often - or not often enough. When paying bills, he always put a stamp on the envelope and mailed it, but some of his checks had no signature. When we had a conversation, he could talk about events from many years ago, but never remembered what happened just yesterday, or even earlier that day. I had little experience with this problem, so I made excuses constantly. I told myself that Dad was getting old (he was 80) and his neighborhood had changed a great deal (it had developed terrifically) and he had lost many people close to him (both parents and his wife).  He was functioning so well that I thought it was just normal behavior for a senior citizen who had been retired for about 25 years. But still, his memory continued to slip away, despite new pills he'd been told to take.

Eventually, his neurologist told him that living alone was no longer safe or healthy. And, she said, Stop Driving Or I Will Report You To Police! He took it very hard. My sister was with him at that appointment, she said it was very emotional for both of them. Dad seemed to think that the doctor had told him that he was "losing his mind" or going crazy. His reaction was composed of equal parts anger and stubbornness.

So it was official, Dad was diagnosed with a memory loss disorder. It wasn't labeled Alzheimer's Disease, Vascular Dementia, or any other specific type of dementia. His doctor just said, "When we get older, our circulation is poorer and we slow down and get forgetful." My sister and I started calling it STML or Short Term Memory Loss.  Dad just says his memory is shot, or that he is "out of it!" The doctors told Dad to move to Assisted Living or to get home healthcare. He would not consent to having a stranger in his house, so my sister and I had to talk things over.

First, Dad tried staying with my sister at her home, 350 miles north of his place. She has two grown daughters and three grandkids. They lived nearby at the time, and were frequent visitors. Dad could not handle the energy level there, so my sister looked into an apartment at the assisted living units down the road from her place. He tried that and lasted about four days. He would not come out of his room for anything, unless my sister came and fetched him for a meal. So my sister and Dad drove back to his home, and then she called me.

My husband and I decided to try having Dad in our home. We have no children and there was a spare bedroom. In about three days, we moved out of the master bedroom suite and set it up for Dad. The two of us moved our things into the guest room and squeezed our belongings into one closet and one-and-a-half dressers. I was working from home at the time, writing about breast cancer for, so I would become Dad's caregiver. My husband would keep teaching engineering at Texas State University.  Dad agreed to a 2-month trial of living with us, an informal agreement he signed on to in September 2006.

Dad's 80th Birthday at our house
I drove up to Ft. Worth and met my sister and Dad at his house. He brought along his dog Toto, a suitcase, a small TV, some photographs, and his favorite chair. We loaded everything into a rented SUV and headed south. We just barely had any idea of what we were getting into and no clear idea of how much our lives would change. There was no clear diagnosis, no caregiver training, no long-term plan. All we knew was that Dad needed to live with people who cared about him.

Since then, we've had many adventures. All of us have changed and adapted as best we can. Some days are harder than others, but since Dad is so agreeable, most times are fairly pleasant. Every day that ends up well is a Good Old Day. We are making as many of those as we can. And we are storing up memories. There is only one reason that we do this and keep trying, despite the changes and inroads made by dementia. That reason is Love, and it is greater than anything that a human disease can threaten us with.