Thursday, February 15, 2018

Instability Unexplained....

But eventually I understood. My eyes are filled with tears as I write this. As I have written before, Jim is receiving the very best of care from the wonderful staff at the care home. However, over the last couple of weeks I have noticed a significant change in Jim, and I struggled to understand. I absolutely understand that dementia results in a decrease of function, however what I was witnessing I had a hard time understanding.

Jim became more anxious, pacing quite a bit, and his sleep was disturbed. His anxiety was so high that he was unable to sit at the table for a meal for more that a few minutes. He paced a lot; and while walking is good, his pacing around the unit was clearly unsettling for him.

Jim is still ambulatory, for which I am grateful. His gait is quite slow, but he is able to walk around the unit without any assistance. Two days ago, when he was in a highly agitated state he took a walker (unoccupied) and started using it to walk around the unit. It wasn't because he needed it, but seemed like more like a compulsion to him. He walked for about an hour using the walker, then finally set it aside to continue his usual walk.

It was a very difficult day for Jim. When he saw me arrive on the unit he was happy to see me. But that lasted all of 10 seconds. He then started to rant. With his very limited ability to speak words, he still managed to say "What the f*@# am I doing here?". It is the most words I have heard him string together in a long time. He was clearly upset. Upset at me, upset at anyone he saw. What was happening?????

It turns out that the federal government, in its infinite wisdom, has regulations for nursing homes that require periodic GDR, or Gradual Dose Reduction of medications in certain classifications. This is the link to these regulations. The regulations include SSRI's and antipsychotics. Jim has done so well at the care home that staff were hesitant to attempt a GDR with Jim. But they had to.  If regulations are not met, the federal government imposes sanctions. 

So, with trepidation they decreased his citalopram by half on 2/1/18. I did not know they were doing this. In retrospect, I have mixed feelings about the fact that they did not tell me about this until after the fact. It obviously did not color my view of what was happening to Jim with the GDR. 

Jim was placed on the citalopram almost a year ago (when he was still at home) for anxiety. It is typically used to treat depression as well as anxiety. Jim had a good response to it. I spoke to the Director of Nursing last night. She said that they are now able to clinically document Jim's setback with the reduced dose. They have restarted his usual dose as of last night. It will take at least a week or two to get him back to his baseline. 

Unfortunately, they will need to attempt a GDR with his Geodon as well. Regular readers will remember that Jim was placed on the Geodon, an anti-psychotic, while he was at home. It helped with his hallucinations and delusions. But like the citalopram, the Geodon will need a trial dose reduction at some point to see how he does. I think I know the answer to that one...

Before they attempt the Geodon reduction, they will give him some time to stabilize on his citalopram. I know that the only reason I was able to keep Jim at home for as long as I did was because of the help that the citalopram and Geodon provided to Jim. Without it, he would have been placed much sooner. 

The hardest part for me is to think about Jim suffering all because of federal regulations. I totally understand that the government wants to avoid "chemical restraints" as a substitute for non-chemical measures. And I totally get that there are some situations where it is just easier to give a pill, instead of addressing the underlying reason for someone's distress. A good example would be boredom. We know that by providing meaningful activities for folks with dementia it goes a long ways towards preventing negative behaviors. The care home does an outstanding job of this, with regular activities scheduled throughout the day, for those who wish to participate. 

The citalopram and Geodon allow Jim to be able to participate in these activities. The last week or so he has not been willing to participate in activities. As I was not aware of the dose reduction, I had a hard time figuring out why. Now I know. 

Jim never asked for any of this. This dreadful dementia has robbed him of a normal retirement with his sweetheart. I am his protector, his advocate. It tears me apart to think of what he has gone through the last couple of weeks, all because of federal regulations. In some ways I'm kind of glad that I didn't know about the dose reduction ahead of time. It would have tortured me the whole time, knowing that  a purposeful action had the potential to impose suffering for Jim, causing increased anxiety and agitation. 


On a totally different note, my elderly mom was hospitalized for pneumonia. She is now back in her home recovering, but requires a lot of support as she slowly gains back her strength. I've been a little stressed doing double caregiving. I have several siblings who can help with my mom, but only one who is retired. It's been a juggling act, taking care of Jim, my mom, and still trying to do some self-care so that I don't fall apart. 

Speaking of that, my weekly appointments with Dr. M. continue. She is my strongest advocate! It is amazingly therapeutic to be able to speak so freely within a "safe place". It helps me to sort things out, to process what is going on in my life. I can tell that I am more stressed than usual. I feel it physically in my body. So grateful to have her in my life, helping me to navigate this next chapter of my life. 

Thank you dear readers for stopping by and listening. It does my heart good to be able to write about what is in my heart and on my mind. 

Friday, February 2, 2018

Dementia Update

It's cold and snowy today. I'm scheduled to meet with Dr. M. this morning, but I will need to postpone it until next week. It's nerve-wracking to drive when the roads are this bad. The plows and sanders are out, but with the rate of snowfall (which is scheduled to continue until tomorrow morning) and the very cold temperatures, the driving will be hazardous. Especially on the hilly terrain that is part of my route.

I recently updated Jim's progression of his dementia, which you can view here. The care home continues to be very responsive to Jim's needs. They have agreed to supply the gray pull-ups for him to wear. This white ones were never acceptable to Jim, and it was a source of anxiety and anger when it came time for him to change.

Jim's gait seems slower to me. When we walk the halls, he frequently will rest his hand on the railing along the side of the wall for a little extra support. There are a few new residents whom we are getting to know. Yesterday the manger of the unit put a stop sign on Jim's door. Apparently there is one resident who likes to open Jim's door when he is sleeping and proceeds to poke him, trying to wake him up. Manager is hoping the stop sign will deter this resident. I so appreciate their attention to detail, looking for solutions to prevent potential problems.

Since writing my last post, I've thought a lot about the difficulty Jim's brother has with communicating with Jim. As I read what I wrote, it now seems harsh to me. I appreciate the thoughtful responses to the post that helped me to be more sensitive to how difficult it can be for many people to interact with someone with dementia.

As mentioned before, our house is on the market. There have been a couple of showings, but no purchase offers yet. It's a rough time of year for moving real estate, but things always pick up in the spring.

As I wrote this morning in an email to my friend Jabberwalky "It's funny, but I'm definitely disengaging with our house. I kind of feel like I'm just a "holder" until someone else moves in. It's hard to be here, as everywhere I look, there are so many memories and reminders of what I no longer have - a home with my life partner."  

Sad as it is, I think it is a healthy response and helps me to move on with my life as I need to, given the current reality of our situation.

I have a friend who lives in New Hampshire. She and I have been friends for many years and actually worked for the same agency in the 1970's. After she retired, she and her husband moved to NH. But we always kept in touch over the years at Christmas time with cards and notes. Last Christmas I shared with her about Jim's dementia. Imagine my surprise when I received some specialty fudge from Provincetown in the mail! She was reminiscing about a trip to Cape Cod we took together many, many years ago. Such a thoughtful way to reach out to me to let me know she cares.

Fellow blog writer Alice wrote a great post yesterday. The dementia journey is different for each of us, but the bond we share as caregivers is so important; it helps to know that we are not alone.

Thanks for stopping by. I so appreciate each one of you!