Tonight's picture was taken in July of 2008. It was Christmas in July on our deck! Mattie had just been diagnosed with bone cancer and his request was to take out our Christmas displays. We used to decorate our commons area for Christmas. Mattie loved it, and each year, Mattie would pick out another light up decoration to add to the mix. Some of our reindeer were even automated and I can't tell you how many people in our complex used to tell me how our lights brightened up their holiday season. However, when Mattie was diagnosed, we kept all the lights on our deck and though we were all scared to death over Mattie's diagnosis, Christmas lights served as a positive distraction. I remember this moment in time and the sheer terror I felt, so much so, that I couldn't sleep or eat.
Quote of the day: The simple act of caring is heroic. ~ Edward Albert
It was a very long day. I was at the hospital from 11am until 7pm. Today was a family meeting with the healthcare care and then training with my dad's physical therapist and occupational therapist. I have had several opportunities to participate in my dad's physical therapy sessions over the last ten days, therefore, I have been watching his progress and getting to know his PT. My dad's OT, I classify as a piece of work! This is a woman who never asked about the strategies we are implementing at home, or what we have tried in the past. Instead, she feels she knows my dad's abilities and strengths better than me and today's training day, was designed to show me how WRONG I am about his abilities.
The occupational therapist has been working with my dad on dressing himself. Now don't get excited, my dad will never be able to dress himself independently. He is not cognitively equipped anymore to go into a closet pick out the clothes he needs, and then sequence the process to dress. In addition to that, my dad has trouble logistically putting clothes, socks and shoes on himself. However, she was dead set on showing me that if you give my dad an undershirt, he can pull it on, that he can find a way to thread his feet into pants, and with this sock assist gadget he can work on getting his socks on. Of course none of these activities can be done without verbal cues, a whole lot of time, and some assistance. I truly can appreciate what she is trying to do.... she is trying to give him independence to some degree. She is also trying to get him to use his body and brain. All great things. But here's the problem with all of this.... when she is working with my dad, he has gone from resting, to having a session. A session where the only thing he needs to focus on is her tasks, and then right after the session, he can rest again. WELL THE REAL WORLD DOESN'T OPERATE LIKE THIS!
In the real world, my dad showers every morning, which is physically demanding and taxing. By the time he gets out of the shower, you would think he needs to go right back to bed. So giving him the task of dressing himself, would send him right over the edge. This is the nuisance that she can't appreciate. Not to mention the simple fact that with my dad's Alzheimer's simple tasks are not simple. Yet if I saw that my dad felt proud, happy, or satisfied with dressing himself today, then this would make me PAUSE. Then I would say, okay, I will find a way to get him to dress himself. But here's the thing! My dad not only did not find satisfaction in this task, but five minutes later, he did not even remember us working with the therapist, or any of the tasks he just completed! So from my opinion, these cognitive and psychological components need to be understood and evaluated! These are the things the therapist didn't consider. By the time this training session was over, I felt unappreciated for the intense role I play in my dad's life, not valued for my insights as I have over 4 years of daily experience with my dad, and most of all I felt that this young woman had NO meaningful understanding for the juggling act myself and other family caregivers perform each day.
When my parents were living in Los Angeles, and my dad was functioning better than he is now, his caregivers couldn't get my dad to cooperate and help himself put on his clothes and shoes. As I told this therapist today, my dad maybe compliant with her, but dynamics at home are naturally different. Again, this was a fact that seemed to be lost on her.
Once I arrived back home at 7:40pm, I started my chores of laundry, doing things around the house, and assembling my dad's bedrail. This is the second bedrail I have purchased. The first one I returned. This one was a lot easier to assemble and it seems to work. Nonetheless until I use it with my dad, I won't know if I am keeping it or sending it back.
In addition, I processed through the mail and I found that the hospital responded to my grievance complaint. A lack luster and legalese response! Clever how they view my dad's visit to the ER on July 9 and then on July 11 as two separate incidences, and not related to the other! It makes it easier that way, because then they do not need to take culpability for his fall on July 11. My dad was discharged from the ER on July 10, and deemed to have nothing wrong with him. Despite my protest! But my dad had an upper respiratory virus that knocked him out and therefore instead of being in the hospital where he belonged, he was sent home, and in his weakened condition, he fell 24 hours after being discharged from the ER. Which prompted the need for an ambulance, another ER visit, and then admission to the hospital on July 11. My dad will be discharged from the hospital on July 26, so as you can see, it was a two week admission, which could have been cut in half if he was admitted to the hospital in the first place. I am sick of hearing about Medicare's requirements for a hospital admission! All I know is they followed Medicare's requirements on July 9, then my dad fell, and now Medicare is paying for a two week admission instead of hospitalization for a few days. Seems to me the requirements need an overhaul.
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