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. 

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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. 

24 comments:

  1. I'm sure you've helped others who may be in a similar situation.
    But how heartbreaking for you to see how this process has ravaged your husband.

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    1. Hi Marty. I'm grateful if somehow this blog is able to reach other folks who may be going through something similar. It always helps to feel less alone. Yes, it is heartbreaking to see him suffer with this terrible disease. I don't allow myself to think about it too deeply or too often, otherwise I don't think I would be able to handle it.

      I try hard to focus on the positives, such as he still remembers me and loves me :-) But every once in a while, the reality hits pretty hard.

      Thanks for your comment Marty.

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  2. I am so sorry. You have so much on your plate already. It seems the older we get, the more things pile on and we can't stop them. The only thing we can do is to try not to fall apart I guess.

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    1. Hi Roberta. Thanks for your kind comment. I agree, that sometimes the hardest part about changes are when we realize they are changes we have no control over. Yes, my efforts are on trying to not fall apart. Because if I did, it would not be helpful to Jim or to myself. Just have to try to stay strong and gather my supports close to me.

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  3. Oh Carole, there needs to be proper local medical authority working in conjunction with these types of regulations so that vulnerable patients aren't subjected to this nonsense. I'm stunned to think that across-the-board regulations dictate the medical treatement of patients in nursing homes, with absoutely no recourse but to try out a reduction in rx. Wow. Something to inqure about when looking at facilities in our region.
    So very sorry to hear about your very difficult couple of weeks! Hang in there, get out for a walk, and know we're all thinking of you! One day at a time!

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    1. Hi Jabberwalky. There have been some national headlines recently about dementia patients on anti-psychotics. Of course the angle of the articles is all about shock and outrage. No appreciation at all for an individualized approach based on needs.

      Yes! Totally agree that it would make sense to have local medical authority working in conjunction with the regulations, and have the ability to protect the vulnerable from the mandated DGR.

      Thanks for your kind words. I'm definitely in tune with the need to take care of myself. I have to be at my best for my sweetheart :-)

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  4. Oh my pills. My horrible several weeks was compound by a too busy no time for questions Mayo Doctor who doubled Barbs anti agitation pill. This followed three day of testing which included hours of questions and 4 pet scans none of which went well.... This fiasco included a left hand not knowing what the right hand mix up between Mayo and Olmsted where Barbs primary care and neurologist are located. Bureaucracy in action. The result was Barb basically sleeping day and night for 3 days. I barely could get her up to eat a couple of times as she was in a zombie state. I cut her dosage back to the original on my own thinking I'd rather have her calling me bad name that in a near vegetative state. I finagled an appointment with a psychiatrist, who said I had done the right thing, listened well to both of us, provided some advice and made contact with Barbs primary doctor to make new arrangement and coordination. All is well as of today, we're back on track, going on an outing with some friends today..... But pills.... still no Federal Regulations though to complicate thing...:)

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    1. Oh my goodness Ray! What a nightmare that must have been. I'm so glad you followed your instincts and cut back on the dose.

      Their is such fragility in the lives of those with dementia. It takes a good coordination of care to provide proper treatment and management care. And of course, as your example shows, the input of the caregiver must be taken into account. And of course there must be a doctor who is actually listening to the caregiver, so as to avoid a situation such as you described. It's quite the balancing act, isn't it.

      Glad you were able to get in to see the psychiatrist to help you sort all of this out. Take care Ray. I hope you're finding some time to take care of yourself, as well as Barb.

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  5. Hi Carole. Those who sit at desks should take into account that who are suffering cannot deal with reduced nedication. If it is thought necessary then it should be done on an individual basis rather than en masse. Sorry to hear you have other worries, as if you didn't have enough. Thank goodness you have a blog to express your concerns. I hope it helps even if only in a small way, a bit like talking to relieve the pressure on thought processes. Take care of yourself, my friend


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    1. Oh Valerie, I love your comment "Those who sit at desks....." That is exactly the point, right? I wonder who is exactly writing these policies at the federal level. I would guess that it is someone without first-hand knowledge of what it is like to live with dementia or to be a caregiver.

      What the federal government is saying is that they do not trust that the physician is capable of properly monitoring and prescribing for this fragile population.

      Thanks for your kind words Valerie. Your friendship, and the friendship of all my kind readers means the world to me. It really does help to be able to "talk" about it.

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  6. Govt regulating medication?? I have never heard of such a thing. We are not all the same nor do we respond the same to a prescribed dosage. He was doing so well--so why change? I hate that they are experimenting like that. I do hope the return to his regular dosage helps but hope the reduction of the other med doesn't undo even more.
    I do hope your Mom regains her strength. Pneumonia is such a beast especially to the elderly. A friend's pneumonia last year prompted me to get the shots.
    I do hope you continue to find some time for yourself to rejuvenate and am so glad you still have Dr. M in your life.

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    1. It is an outrage, isn't it. Clearly a case of (perhaps well-intended?) government regulation overstepping and causing harm to folks who are vulnerable and fragile.

      Ironically, before Jim retired, he worked with a vulnerable population too. Many times they would need medications such as SSRI's or anti-psychotics to help them manage their symptoms. I remember when Jim would come home from work and express his frustration at the regulations that required attempts to decrease or wean off these medications. He and his staff worked diligently to document justification for medications, but it was always a battle with the regulatory agencies that would swoop in for a chart review, and look hard to find instances where the regulations were not followed exactly.

      So here we are, full circle, but with Jim being the victim of the madness.

      My mom is recovering, albeit slowly. And yes, I am remembering to take care of myself. Thanks for your comment Patti. I so appreciate you!

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  7. I am surprised that so much anxiety and agitation goes with this disease. I've known a couple of people with various stages of dementia but I'm learning a lot from you. My heart goes out to you; at least you have a strong advocate in Dr. M which must be some comfort.

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    1. Hi Tom. It's hard to imagine what it feels like to have dementia. I think about that often, and even though I have a front row seat to this disease, I can't possibly know what it feels like to live such a brain damaged life.

      I'm guessing that as the world becomes harder to interpret, as you are no longer able to do things that you used to do, when you no longer have the ability to express what you want to say....maybe all of this contributes to the anxiety and agitation? I put a question mark at the end of that sentence, because I really don't know if that is the source of the anxiety and agitation. It would be interesting to see what the research says, if anything, about this.

      It's been a difficult week, to say the least. But it almost feels lame to even complain about my difficult week Jim's world is difficult every minute of every day. Damn the dementia.

      Yes, I am so grateful to have Dr. M. in my life. She listens, she understands and helps me to process all that I am feeling. I'm so grateful to have her help me during this very challenging time in my life.

      Thanks for your comment Tom.

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  8. Good grief -- our government using a broad stroke brush in a situation where medicating needs to be personalized. Horrible...just horrible.

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    1. Hi Carol. My brother called me last night, and I filled him in on all of what has happened. He, too, had seen a number of reports about the chemical restraints (medication) that are used on folks with dementia in nursing home. The reports are negative and biased, suggesting that use of psychotropics in the elderly results in drugged, chemically restrained individuals.

      On the one hand, I understand the need for protective government oversight for this fragile population. There are many in long term care homes that do not have family nearby to advocate for their needs. But the regulations are WRONG. While I'm sure they are not intended to harm, that is exactly what they do.

      Why not regulations that reflect an individualized approach based on need? Regulations that require planned opportunities for folks to participate in appropriate activities.

      I'll get off my soapbox now :-) Thanks for stopping by Carol. Always good to hear from you!

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  9. Yes, so very glad you have Dr. M.
    Yes, too, I so hope they are going to tell "all" before the next change. Hugs from a California Beach.

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    1. Hi Mage. I'm so grateful for Dr. M.! A safe harbor to share my deepest fears and feelings.

      It's hard for me to even think about the next medication adjustment. I'm grateful for a period of stability for Jim to recover from all of this.

      Hugs right back to you Mage! Thanks for your comment.

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  10. If the dosage works, then fine. But if it does not, what then? I just hope that Jim spends the rest of his days in comfort and peace. That is my own personal goal too.

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    1. HI Gigi. The encouraging news is that Jim is doing better since his dose has been increased back to the original dose. I am greatly relieved that he is showing improvement. Thanks for your comment Gigi.

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  11. I'm so glad Jim is doing better with the original dosage. It's hard when the government has to impose a one size fits all regulation. You are truly his greatest advocate!

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    1. Hi Kay. Being his advocate is my main priority these days. He receives such fine care from staff, but the government regulations are frustrating. I hope to have some answers this coming week as to how to prevent anything like this happening again. Thanks for your comment Kay, and Aloha!

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  12. Carole, I find it shocking to read about this government mandated dose reduction, and that the nursing home could experience consequences if they don’t comply. While I understand that there is a need for government oversight of nursing home procedures (and there certainly are some very poor facilities out there), meanwhile people like Jim have to experience disruptions to his care and anxiety because of these broad-brush regulations. Surely, there must be a better way!

    Jude

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    1. Oh, I so agree Jude! The regulations need to reflect the clinical assessment and judgement of the prescribing provider. The idea that regulations are a "one size fits all" is ludicrous. The nursing home staff are sympathetic and agree with me, but yet they tell me they are bound by these regulations. I plan to post again soon, with an update on the advice I was given by Dr. S. (my physician).

      Thanks for your comment Jude.

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