Decline stopped. Is this the new normal?

DotBern

What a roller coaster it's been! Earlier this month, I asked for advice on my mom who entered hospice and was declining daily. No longer able to swallow and was sleeping more often. I thought it was close her final weeks. This past week she doesn't seem to be declining any longer. She is eating again (although not alot) and drinking. I think nourishment may have helped her new found strength. She is more often wheelchair bound due to her weakness during her declining time. She is talking more word salad and her voice has strengthened, and she is no longer sleeping long periods. After alerting family members I was convinced her time was near, she has done a turn around. I've decided this is not the final stage of the disease but perhaps the "beginning of the end stage"?

Now I'm wondering if we should decrease her Zyprexa dosage in order to help with the word salad. I find anytime we have upped the dosage, it helps with her agitation but increases her word salad. Having a conversation is now almost impossible. She talks non stop but doesn't make a bit of sense. The facility believes the medication helps her more than hurts her however I am inclined to decrease the medication in order to have her make some sense when with her. Her neurologist tells me it's all a fine balancing act and tends to agree with me most often to make a change. Any one else have issues with Zyprexa causing total word salad? Any thoughts or suggestions on this new phase? I just want what's best for her. I think the facility enjoys her less agitated and I fear we've caused her more disruption in her cognitive abilities by increasing the drug.

This disease is hell!!

Thanks in advance.

harshedbuzz

@DotBern amen to the comparison to hell.

I am sorry you are at this place. My aunt did a similar thing in terms of spiraling down to a point where she was no longer taking anything by mouth. Her sister guardian would alert us all of the changing situation and then after about a week, my aunt would start eating and being more alert. Rinse and repeat. Three times before the final decline. The geriatrician at the facility felt the rebounds were likely a function of recovering from a mild viral infection. As glad as we were to have her back to her baseline, the emotional rollercoaster was hard for those who loved her.

You said:

Now I'm wondering if we should decrease her Zyprexa dosage in order to help with the word salad. I find anytime we have upped the dosage, it helps with her agitation but increases her word salad. Having a conversation is now almost impossible. She talks non stop but doesn't make a bit of sense. The facility believes the medication helps her more than hurts her however I am inclined to decrease the medication in order to have her make some sense when with her. Her neurologist tells me it's all a fine balancing act and tends to agree with me most often to make a change. Any one else have issues with Zyprexa causing total word salad? Any thoughts or suggestions on this new phase? I just want what's best for her. I think the facility enjoys her less agitated and I fear we've caused her more disruption in her cognitive abilities by increasing the drug.

Any of the atypical antipsychotics have the potential to dull cognition a bit at the higher doses prescribed for schizophrenia and even bi-polar disorder, less so for the very low doses most often prescribed for agitation in dementia. That said, by the time a PWD enters hospice, the loss of cognition and impact on expressive speech will likely be considerable. I agree with her neurologist that medication is a delicate balancing act. Sometimes there is no perfect regimen, and a trade-off is made along the lines of ceding some alertness for distress. Only her team on the group can make that call.

In defense of the facility, behavior is communication. If she's agitated it's because she's distressed in some way and doesn't have the cognition to work through whatever it is upsetting her. The use of medication to dial back feelings she can no longer process is about more than her being an easier resident, it's also about reducing suffering. I would talk with her doctor and the DON about trialing a lower dose of the Zyprexa. With disease progression, she may be OK with less medication. If not, it can be added back in. IME with Seroquel (same class of medication) the impact at a low dose had more impact on dad's alertness than his speech which was freakishly intact. In the first 2 weeks of starting, it made him sleepy but less so after.

I hope you can work this out.

HB

SusanB-dil

From what I've seen on 'here', the turnaround is not so unusual. We have had MIL's neurologist just go by our suggestions on increasing or decreasing dosages. I think the docs know that we are their eyes.

Little bit different situation, as MIL has alz and vasc. So when she has a 'TIA', she will decline just a little farther, then bounce back up just a tiny little bit. I call it steps, so with a 'TIA' she may go 3 steps down and 1 step back up.

Agree - I sooo HATE 'this' @!!()()*&%**) !!!!!

DotBern

https://alzconnected.org/discussion/comment/229117#Comment_229117

Dear Harshedbuzz,

Thank you for your insight and experience. You hit a nerve when saying, "The use of medication to dial back feelings she can no longer process is about more than her being an easier resident, it's also about reducing suffering." This gave me pause to think more about it. I will ultimately have a discussion with the nursing staff and hospice about the reduction of meds. But I hadn't thought that the medication may also be reducing her suffering because she likely struggles to process her feelings. I guess I'm still grieving the loss of her company. Now I merely sit and listen and shake my head in agreement even though I have no idea what's she's talking about. She can barely answer a question I may ask. She had been on a half of the lowest dose 2.5mg twice per day and we upped her to a full dose in the morning and continued with the half dose in the evening. This is when I noticed continuous word salad. You may be correct about the decline due to an infection. She suffers from ulcerative colitis and has been in a flare up during the decline. Unfortunately, the only medication that has helped her had to be stopped because they are large pills and time released and can't be crushed. She can no longer swallow large pills. In checking her blood work, we are seeing a continued increase in inflammation and kidney function. Just a wait and see and a day to day disease.

Thank you for responding. I looked back at your response to an earlier post and appreciate your intelligence and ability to share with others. It means alot.

DotBern

Hi Susan,

Thank you for your response. I should have mentioned my mom, too has a diagnosis of vascular dementia likely mixed with alzheimer's. We believe she may have suffered some TIA's early on that had gone unnoticed and not documented. She's had hardening of the arteries for awhile. I agree those with vascular dementia seem to decline in "steps" as I've read. I was convinced 3 weeks ago that she wouldn't be with us in a month. Now I'm stunned with the turnaround. It's probably harder on the families with the ups and downs of the disease. It sucks!! Bless you for being involved in your MIL's care.

Quilting brings calm

mom is on hospice. She declined really quickly once she got on it. She was prescribed an additional anti anxiety medication and a pain pill. I thought those might be responsible for part of the decline. So we took them away. After several days without then, it was obvious she was only declining further. So we put her back on the medication Monday, although the lorazepam was changed to Valium yesterday. We felt she could tolerate that better - she was too too itchy and fidgety on the lorazepam. She’s had Valium before.

midge333

It is not uncommon for people to rally before their final decline.

Carl46

https://alzconnected.org/discussion/71274/decline-stopped-is-this-the-new-normal

I had similar experiences with my mother, who had VD and was in NH. Sometimes she would stop eating and taking medications, but I could tempt her with food she loved but didn't get at NH, like a fried fish sandwich, and she would rebound for a time. It worked until it didn't, probably because she didn't know me anymore in those last weeks.

My wife with AD takes a very small dose of Zyprexa. It helps her agitation, and I see no difference with cognition. Cognition varies from day to day and is on the decline as is typical of the disease. On Zyprexa, she no longer sits weeping for hours on end. I would give it to her even if it did affect cognition, I think.

DotBern

https://alzconnected.org/discussion/comment/229170#Comment_229170

Thanks Carl,

I agree the Zyprexa does help her agitation and for that I'm thankful. Since we increased it (still just a low dose) she is incoherent yet never stops talking. It's exhausting to listen to the babble. I decided I will speak with staff to determine if it's worth bringing her back down from a full dose to a half dose where she was previously. It's such a fine balancing act!

DotBern

https://alzconnected.org/discussion/comment/229140#Comment_229140

Interesting that your mom was fidgety on the Lorazepam. My mom was also prescribed lorazepam "in case" she became worried or frightened. She has not been given it yet. There was one episode that she showed fear of dying, that's when we got the prescription but she has been OK since. It will be interesting to see her response to it, if she is given it. Thanks for sharing!

​fesk

DotBern, we have experience with Zyprexa. Our doctor said there is a very narrow therapeutic window. Small changes can make a big difference. In our experience it definitely affects cognition. However, nothing else helped. Please try to allow enough time in between any changes for adjustment too. Takes a while to settle. I wish you the best of luck finding the right balance.