Day 120 with Lewy

Well, I keep thinking “this is the worst day we have had” and then another day tops that one.

Yesterday was a terrible, no-good, very bad day.  Really.  The worst day I think we have had.  I am AMAZED that mom made it through the two hours of testing on Tuesday.

She is in one of those precipitous declines that LBD patients get where the caregivers are shocked at how fast the patient loses the ability to stay awake, eat, or do anything.  But her blood pressure remains good, her circulation is good, she does eat with much coaching, and her elimination functions are still functioning, so this is her brain on a temporary slide to a new lower plateau while her body slides along for the ride (I hope) probably resulting from the blasted Sinemet the doctor had her on briefly.  (NO MORE.)

In addition, she managed to get a fungal infection in her mouth, probably as a result of going to sleep before we could get her teeth out and cleaned or with food in her mouth.  So, today, we started a regimen of rinsing with a hydrogen peroxide solution and with Peridex, as well as brushing as much as we can and using some anti-fungal meds.  (And taking out her dentures even when she doesn’t want them out.)  The problem with this is that mom cannot cooperate too well right now with the rinsing and swishing (and not swallowing) part.

I did get a bottle of Boost into her, along with a small amount of pasta and veggies, plus her yogurt and as much water and milk as I could push at her.

Getting her changed and off to bed was a NIGHTMARE.  I need to try to change her in the bed tomorrow I think.  When she is in this kind of state, at the end of the day, she cannot help me with the Sit to Stand.  It ends up being a Slump and Lift which is not much fun for her or me.  But we made it, with much sweating on my part just because of the stress I think.  I was really worried she would fall completely asleep and end up on the floor while I was maneuvering equipment around.  But she didn’t.

Even though she seems to be sleeping, she is breathing too rapidly for a really deep sleep.  It is more of an exhausted doze, but I hope her body is getting some rest during this and her brain recovers soon.

The mental confusion continued throughout all the physical problems, although she was briefly lucid and very feisty with me.  She asked some strange questions, looked for missing babies, wondered where my brother was constantly, and when I trapped her hand briefly between the wheelchair and her body, she yelled that I was hurting her toe.  Of course I know now that when she yells I have to look everywhere for the problem, not just where she tells me to look.  I have also figured out that Cali is the “baby”, so that’s a relief.  When she asks for the baby, I present her with Cali and she is happy.

She’s still in there.  I told her I loved her very much as I kissed her goodnight thinking she was pretty much unconscious, but she replied, very clearly.  “I love you too.  More than you’ll ever know.”  She’s still in there.

Damn disease.

Category: LBD Journal  Tags: ,
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2 Responses
  1. Mary Jean Dehne says:

    Good morning,
    Well, we are a ND family just beginning this ugly journey of LBD with our dearly beloved father. I am just locating the LBD website and your blog. Thank you for your words. We are just now trying to find a Dr. who knows anything in our area about LBD. We are fairly close to Mayo clinic. Do you know of the most reputable medical facilities that are proactive in diagnosis/care for LBD patients. Dad has always wanted to be involved in research so he could be of help to finding a cure.
    Thank you if you have time to respond and for your blog. It’s not easy to share pain like this to the public. But, I am so grateful to have found a real person who is further out on this journey than us.
    Mary Jean

  2. Donna June says:

    Well, sadly enough, you just joined us at the end of our particular journey. We lost mom on Thursday very suddenly, not the normal end of life scenario for someone with LBD, but , for us, it was in some ways a relief. She was in a very rapid decline and she was, as she put it, very very tired of it all.

    I would direct you to the LBD Association forum for information about doctors. A LOT of the folks there are very well versed about the best doctors in certain areas. Robin on that board is a WONDERFUL resource.

    So sorry. I will be posting details of what happened to mom just in case someone else might have the same experience.