Taking meds dilemma

wspceo1

My DW and I are married 48 years and she has been diagnosed with ALZ. She has symptoms of stages 4 and 5. She started having delusions in October 2021.  By January the delusions and hallucinations were becoming a major issue and in February she started on Aricept which seemed to help the dementia and some hallucinations.  By April the delusions were getting bad, and she was having them all day and night and she started on quetiapine.  First 25 a day then 50 and last week up to 100 to slow down the delusions.  She viewed that she was cured last week by her invisible doctor on her invisible phone and refused meds.  I was able to convince her that the Aricept was helping her, and she started on them again.   This week she will not take the antipsychotic as she says it makes her unsteady and dizzy.  The delusions are back in force.  We go back to the psych Dr. in 2 weeks, and I’ll ask for help.   I can’t hide the meds in food or lie as she will feel the difference.  When I brought up the issue about using different meds the psych Dr. said no, as the side effects of others were too risky.  My questions are, do I find another doctor, do I just live with the delusions and does ignoring them make them worse? Does anyone have similar experience sand have moved to a med that deals with delusions more than other symptoms.  Thanks for any info.

ButterflyWings

Hi wspceo - very sorry for what you are going through. Welcome to this group - we help each other through the twists and turns of dementia. I have experienced my DH missing his seroquel/quetiapine and it is as you describe. The hallucinations, delusions and resulting acting out get dangerous (for both of us).

You would be wise to crush the meds and place in a small amount of a favorite pudding, applesauce, smoothie or the like. Don't assume she will know. I used to tuck the 25 mg pill into a blueberry and only place a few in his breakfast cereal. Then after watching him eat the "loaded" berry, I'd add more for him. This is one of those "whatever it takes" matters. Your Dr. must not minimize it.

Some meds have liquid forms which can be even easier. I have occasionally used liquid Melatonin to help DH take the edge off when most agitated and actively about to elope - especially around his 4p sundowning. He requires 10mg before it slows him down enough for a short nap. Then on awaking, the urgency has often passed. FYI, aricept did not agree with him nor donepozil so that was abandoned pretty early in our journey. It is not thought to be helpful by mid stages I believe, and it sounds like your DH may be there (?)

Regarding withholding a needed med solution due to warnings or risks, I'm disappointed that anyone treating dementia would think that way. Most of our docs have agreed that care needs - managing the worst behaviors - for this terminal disease outweighs the 3% risk that the most common black box warning represents. It is your life, your sanity and your LOs agitation, not the Drs. As her husband and caregiver you not only see her 24/7 but you live there with the aftermath of unmanaged progression. 

So, do be firm with your requests. Many caregivers do not survive their PWD LOs disease, largely due to neglecting their own needs and mental plus physical health. Don't feel guilty and your instincts are 100% correct. I am sorry you and your DW are going through this. AD is a homewrecker and heartbreaker for sure. We have to survive it intact though our LOs cannot. I hope you get some help with managing the delusions and hallucinations which will be more comfortable (and likely safe) for you both.

Mint

Welcome to the board was.

There will be others along with way more experience and wisdom than me to help you.  

wspceo1

Thanks for the reply.  If I can find something she can/will eat I will try it. She is on a keto diet as her psych DR. believed functional/integrated care/diets would help.  Ill also do research on the drug list that alz.org has on the site and Ill push the DR to try a different anti-psychotic.   It is not easy to change psychiatrist here in NYC. Average wait time for a new mental health DR appt. is running 6-9 months. It can be shortened if you pay cash and not use any health insurance.  I'll start looking for one now also.

ButterflyWings

Others will come along with additional ideas for you. It seems like a med change may not help much if you can't get her to take it. Also, stopping and starting many of these meds abruptly is not advised. They take a while to get the right med dosage, and to see positive effects.

For us, DH started out very compliant but by the time delusions and hallucinations started, he was showing what I learned later to be "anosognosia". He really had no idea that he was ill and was suspicious of anything I might give him. He has actually accused me more than once of trying to poison him!  Plus even now he asks me at least once daily "what is this for?, I don't take any medicine!" He just can't remember. Even when willing to cooperate. 

So...you may need to start using the fiblet approach or just "don't ask, don't tell". If your DW were 4 or 5 years old you would not consult or bargain with her over taking a necessary medication. That't the reality of spouse caregiver. You are parenting your dear wife as frustrating and sad as that is. And often the best approach is without their knowledge.

Good luck to you. Like Nike says, "just do it". Here are some links that may help too.

https://dailycaring.com/11-ways-to-get-someone-with-dementia-to-take-medication/

Dementia - Redirecting Hallucinations with Teepa Snow of Positive Approach to Care