I think I know the answer to this question, but I'd appreciate any input from those with more experience than I have.
My mother is in a NH after suffering a serious stroke last March. She has made only limited progress physically since then, and her cognitive status has declined precipitously. She has NO short term memory, is incredibly confused about even the most basic things, uses words incorrectly, has trouble remembering members of our immediate family (though she still knows me), cannot carry on a conversation, is sometimes inappropriate, etc. She is also very depressed and anxious. In short, she has all the classic symptoms of dementia. She is under the care of a geriatric psychiatrist, who has diagnosed her with vascular dementia (though just on the basis of observation and his interaction with her, not any specific tests). She is given Seroquel (37.5 mg once a day at bedtime) and Ativan (.75 mg. three times a day). She is also on an antidepressant (Effexor). I should also mention that some of her symptoms were evident even before her stroke (short term memory issues, inability to handle finances, inability to follow a conversation unless it was one-on-one, depression).
As I said, her condition has gotten progressively worse over time, which I know is what is expected with dementia. I also know that vascular dementia can progress rather quickly. I cannot help but wonder though whether her really fast decline is at least partially caused by the medication she is on. Her steep nosedive seemed to me to coincide with an increased dosage of the Ativan (which has since been scaled back to the .75 mg three times a day). This dosage has been kept steady for the past 2-3 months, and the decline has continued. So what do you think: is the medication making things worse? As heartbreaking it is to think that the demential has simply accelerated, it would be even worse to think we are doing something to contribute to it. While I think it's the former, I am haunted by the thought that it may somehow be the latter.
This is a question that needs to be discussed with her doctor.
Everyone reacts differently to medication. Only you and her medical team can determine what is or isn’t working.
She has JUST re-entered the land of the normal with a scaling back her morphine (for shortness of breath - recently it just... got easier for her so i didnt need to keep giving it as often and it was like.. surprise!!) and the addition of a slightly higher dose of seroquel. (same as your mom basically, though my mom its 1/2 pill in the morning then a 25mg at evening) Thing is she's in home hospice I am here 24/7 taking notes of what's given when, what happens when, what's said what's not said etc and can monitor her closely to see what works what doesn't, versus just an hourly "do you know where you are do you know who the president is" orienting question sets and someone waiting for a dr to make a call. I consult with hospice nurse, ask if an idea sounds good, then we try it.
The seroquel seems to, as a "side effect", help my moms depression and anxiety, so even though it appears now it is prob the morphine that was disorienting her so bad she seemed like she had sudden onset big dementia symptoms, I'm going to keep giving the seroquel as her overall mood is better, she's more even-keeled. she's on a small dose anyway, and again, it seems to be working. SSRIs and etc always knocked her off the mental cliff (I never had luck with them either).
but yeh, in the beginning I thought it was the ativan in the comfort kit making my mom loopier as well but it is looking like at least in her case, it was actually the morphine. I've had maybe mmmm 6 days of my mom washing back into the normal world and these are prob the happiest 6 days of my life right now :D
Strokes are brutal. Hubby had one in 2020 (and I robbed the cradle, he was only 37 and it was a 20mm aneurysm that clotted up that caused the stroke, hemmoragic and ischemic damage both). Aphasia is common in strokes. He also had issues recognizing people.
benzos might also make it hard for your mom to record any memory. Hubby has no memory of his time in hospital and I don't think he had any clear continuous memory until they stopped the ativan but he definitely needed it. but it was a bit like his record button didn't stay down. I just kept repeating myself.
I knew he was there in the moment with me. Him remembering that moment wasn't necessarily important to me, I just wanted to *have* those moments. I knew I would remember them. I knew he would experience them.
Years ago, I had a DNA done regarding medicines which showed what meds are fine to take and what meds to stay away from. The findings were what I had expected, and surprised by others. Might be worth looking into.
For myself I was finding memory issues when I started taking a cholesterol medicine and that was down right scary. After checking my DNA med chart, sure enough, the chart said to stay away from such meds.
Thanks again for taking the time to respond. I truly appreciate it.
The doctor is right with the Vascular dementia.
I would contact Hospice to see if she is Hospice eligible
Let them keep her comfortable
They will manage medications, NH will still administer meds but orders will come from Hospice doctor..
Hospice is another set of caring eyes on mom.
.75 mgs is quite a bit of Ativan; why not scale it back to .25 mgs and see what happens?
Mom did not take Seroquel or any other antipsychotic medication for her anxiety. Some antipsychotic meds have been known to cause bad side effects in dementia patients and aren't recommended in many cases. These types of meds CAN cause dementia to worsen, and side effects are as follows:
What are the side effects of Seroquel in dementia patients?
Quetiapine (Seroquel and generic) Risperidone (Risperdal and generic).
Side effects include:
Drowsiness and confusion—which can reduce social contact and mental skills, as well as increase falls.
Weight gain.
Diabetes.
Shaking or tremors (which can be permanent)
Pneumonia.
Stroke.
Sudden death.
I think our natural inclination as 'fixers' is to blame someone or something for a loved one's quick decline, when in reality, it's likely the DEMENTIA that's to blame. But if we have an opportunity to be CERTAIN, why not go for it, right? If this were my mom, I'd discontinue both the Seroquel (if it's safe to do so) and cut the Ativan back to .25 mgs and see what happens. DEFINITELY check with mom's geriatric psychiatrist to make sure it's safe to do so or if she needs to be weaned off of these meds slowly or what, who knows?
That way you'll see for yourself if her cognitive state improves with time or not.
Wishing you the best of luck with this experiment!
There honestly is not going to be a "perfect" anymore. There is a need for medication, and yet medication well may be causing some side effects. It is almost impossible to find the perfect recipe and even when that is found, there will be no amount of time that a happy medium is assured.
The truth is that you are looking for something that may not exist for the person you love, the person you are seeing experience loss upon loss upon loss, suffering piled upon suffering. There almost certainly will be a downward trajectory no matter what the reasons for it is. There is no answer but the finality of peace, which means the final loss to the person you love, and a loss to yourself as well.
You can question yourself over and over again, and go in circles, but the sad truth is that this is a very sad time of life, and there is nothing here likely to be "fixed".
I am so sorry. There is no reason that you cannot discuss with MD an attempt to withdraw medications, telling him about your discomfort and fears that they may be making things worse, a thing for which you feel responsible. I doubt he will believe that's the case. I think he will try to convince you not to withdraw medications that were clearly started for a reason. But it may aliviate some of your pain.