Saturday, July 20, 2025

Saturday, July 20, 2025

Tonight's picture was taken in July of 2003. Mattie was a year old! It was his first trip to the Outer Banks of North Carolina. That day we went to see Bodie Light. I am a big lighthouse fan, and I wanted to pass along this love to Mattie. I figured you couldn't start too early. In fact, Mattie loved all our day trips far better than seeing the beach that year. 

Fast forward to July 2009, Mattie created a birthday card for me, with the
help of my in-laws, that was in the shape of Bodie Light. To me, this card meant that Mattie remembered our trips and our lighthouse adventures together. 

Quote of the day: When you are angry, you’re carrying the burden while the other person is out dancing. ~ Irish proverb

Before leaving for the hospital today, I put together a big pot of homemade chicken soup. I had frozen chicken broth that I made months ago, and I defrosted it and threw in all sorts of vegetables today. I find after a long day at the hospital, by the time we get home, I do not want to cook, nor do I want something heavy to eat. I figured chicken soup has protein and vegetables and would be good for my mom and me. 

We arrived at the hospital at 1pm. My goal was to attend the 2:30pm occupational therapy (OT) session. My dad has been in the acute rehab of the hospital since Monday. It is NOW Saturday, and I have yet to meet the OT! Why? Because they keep changing the schedule on me. As we were walking in the hallway to my dad's room, a woman was trailing behind us. I turned around and she explained she was Sarah, one of the OTs. She isn't my dad's weekday OT, but was working with him today. She let me know that my dad completed all of his therapy for the day. I told her that couldn't be as he had a 2:30pm session and I was looking to observe the process. Keep in mind that I have already participated twice in my dad's physical therapy sessions! Needless to say Sarah did not know what hit her. I told her that I can understand the schedule changing once or twice during the week, but with my dad it is daily! I also told her I have yet to meet Aileen, my dad's OT and would be curious to know what they are working on! She said I sounded angry! YES I AM ANGRY! I am angry about a lot of things. 

But I think what sets me off regarding this whole situation is that his health care team doesn't take my input, doesn't care to know about his level of functioning before he was hospitalized, and even worse doesn't care to know the strategies we currently use at home. Instead, they talk to me like a clueless wonder who doesn't have the foggiest clue how to manage a 90 year old with Alzheimer's and considerable physical impairments! THAT SETS ME OFF!  

Shortly after complaining, in walked Aileen. Truthfully I was better NOT meeting Aileen. She was attitudinal and condescending. She told me she was working with my dad on how to use a sock assist. If you don't know what this is, I included a photo. It is a device used to help you put on your socks. What's the problem with this? 

Countless OTs have tried to use this device with my dad in the past. Cognitively it is very confusing for my dad. I would be the one who would have to do most of the work, so in essence it is counter productive. In addition, it already takes me 45 minutes each day to do my dad's morning hygiene routine. I have no intention of adding another 30 minutes to the process to use a gadget. A gadget that has led to lots of frustration in the past for my dad! This is where consulting with the family is vital! If she had asked me this to begin with, then she could be working on other tasks with my dad that we perhaps could actually implement at home. This is the great divide between healthcare and the caregiver! 

Once I got into my dad's room, he was up and in his wheelchair. Sarah told me that he was asking about me ALL morning and he even insisted that she wheel him into the room next to his, because he was sure that was where they could find me. I spend six hours a day in the hospital with my mom in tow. Any one who has spent any time in a hospital knows this time is debilitating! Any case, I was hoping my dad was more oriented to reality today, but unfortunately he was not. Today he was asking for his pack of cigarettes. My dad hasn't smoked since before I was born! SO A LONG TIME AGO! In addition, he wanted to play poker. AGAIN something we have never done! This confusion and disorientation comes with dementia and being institutionalized, which is why I try as much as I can to be present in order to ground him back to reality. 

You may recall that my dad's nurse yesterday was sure that he had cDiff, a bacterial infection of the colon. I told her I did not think my dad had cDiff, as my dad has irritable bowel syndrome and these bathroom accidents are a frequent occurrence for me. Any case, I asked my dad's nurse today whether they captured a fecal sample and what was the plan of action! You are going to love this! Yesterday's nurse did not chart this issue, nor did she consult my dad's doctor like she promised. So today's nurse just looked at me dumbfounded. Needless to say, I know my dad doesn't have cDiff and truly that is what matters. If I thought something was different or wrong, you can rest assured I would be all over the issue. 

However, as the day wore on, my dad got more ornery and started cursing at me. Again, it takes all the strength I have to keep it under control. My mom heard him and she reprimanded him. I stepped out of the process to regroup. Truly if the health care team wants to know why I am angry, I think they should walk my DAILY journey over the last two years, and see the impact on their own mind, body, and spirit. THEN WE WILL TALK.