State Department Visits - changing meds

The medications that my mom was on was seroquel, resperidol, Namenda, plus BP and thyroid meds. They wanted her to quit the seroquel and resperidol and take Haldol instead. They said that she had taken the seroquel and resperidol for too long a time and at too high a dosage. Don't know what the dosage was. She had Alzheimer's for over 20 years and over the past 6 months had really declined. So they took her off of the seroquel and resperidol and put her on Haldol. She was unable to walk within in 4 days and not eating/drinking within six days. She was offered food and water daily but declined. She would just open her eyes and she could say I Love You. She lived this way for 12 days. I don't think it had anything to do with the Haldol change even though there is a warning not to give it to dementia patients. Her body began to shut down and we put her in hospice. She died on June 30th. It was a shock to us for her to go so quickly. I would never want her back the way she was and how the disease had so drastically changed her. I will always wonder whether the med changes had an effect on how quickly she faded.

Hi @kateia,
First off, my heart goes out to you on the loss of your mom. Even though one is aware that Alzheimer's is a life-ending illness, it is hard to accept when the end-stages come so quickly. We question why; what could we have done; and look for answers. Can we ever really know?

I'm tagging fellow caregivers on this message @IndianaScott @nanax2 and @julz to share the next stage of this journey with you.

Are there different rules for each state concerning the state department coming in and reviewing medications for patients? As a family we were always on top of medications and the Memory Care unit worked with us so well along with mom's doctor. What I don't understand is how they can come in and make changes by only looking at her chart and not seeing her. I'm a little disappointed that no one really responded to my first post. I'm sure there are other families that changes have been to medications for their loved ones. They did this every six months at my mom's unit. We always were notified by the Memory Care staff and had it approved by the doctor before any changes were made. It just seems weird when families are actively working with the doctors and memory care staff about medications and then the state comes in and mandates changes. It always seemed to disrupt a balance of medications that had been carefully administered. Any comments?

Hi Kateia,
I moved the 2 discussion threads that you started about state department visits and changing medications into one discussion. Furthermore, I took your original question to a pharmacist here at Mayo Clinic. Here is her response:

"Medication reviews are usually required in institutional settings to ensure that treatment regimens are periodically re-evaluated for efficacy. In some cases patients and caregivers are involved in the changes and in other cases they are not. There are recommendations for periodic consideration of a trial taper and even withdrawal of antipsychotics in dementia patients. This is not always possible based on patient-specific factors. You mentioned there is a warning about Haldol use in dementia patients. The warning you mentioned includes all antipsychotic drugs used dementia patients. The findings that led to the warning were not clear on the extent to which the risks are attributed to the antipsychotic as opposed to patient-specific factors. From what you describe it seems like this was a natural progression of dementia. Unfortunately, dementia is a terminal disease. This TIME article "Redefining Dementia as a Terminal Illness" (http://content.time.com/time/health/article/0,8599,1930278,00.html) refers to a more accurate description of dementia as “fatal brain failure…like cancer…”. We need more research to establish the best way to manage dementia symptoms.

You wonder if the med changes had an effect on how quickly she faded. It is so hard to let go and we wonder what we could have done to change things. This is part of the grieving process. If you had more involvement in the decision to alter her antipsychotic regimen, do you think that would have made this process easier or harder?"

The decision to put mom in Hospice was a very difficult one. We chose no IV or tube feeding as mom had gone through so much the past year and one/half. She had been in a pretty steady decline for the past six months. Sleeping more and having a very difficult time walking and not being able to communicate verbally. She understood every word we said, she could read out loud, and we played three games of "domino's" less than a week before she became bedridden. She knew her numbers and where to put them but she could not form a sentence that was understandable to us. Many people say that a dementia patient rallies before their death and I truly believe that is what she did that day. After becoming bedridden she was offered food and drink and refused by pushing away the offer or shaking her head. She died from a urinary tract infection that went septic. Antibiotics were given but diagnosed too late. The warning on the Haldol stated that it could make an infection increase. This is what I was questioning. I think her brain shut down and her organs along with it. Her last words to me were "I love You". Words I'll cherish forever. I truly feel that God was taking charge and was taking her into his comforting arms and removing this horrible disease from her.

I do feel that families need to be informed that the State Health Department will come in an review medications. To order that they be changed without doctor approval (this was done several times) was a little much for us. Of course as a family we consulted her doctor and worked with him on the changes. He visited her every two months and we were notified of any med changes. We had family members in the memory care unit daily visiting her and consulting with the staff. My concern is for all of the patients that do not have the support and medications are being changed without anyone knowing not knowing if it's doing more harm than good.

Her doctor visited about every two months and he was in charge of her medications. But the state still would come in every six months and try to change the medications - stating her dosage was too much or the wrong medications. We worked very hard to get her medications regulated so that she could function without lashing out at everyone. The state people never observed or visited with her. They just came in and ordered the changes after looking at her chart. I have people that I will visit with in the future and get the proper department name and phone numbers. I am working on getting a "caregiving" group established within our church and really want this information that can be passed on so families are not so shocked when this happens. It is my understanding that if the memory care unit would not comply to the changes that they would be fined. The medical staff bent over backwards to help mom and it would be a shame for them to be disciplined. We always went with the doctor's decision as he was well known and trusted.

What state are you in?

Iowa

https://directory.iowa.gov/organization/details/department-on-aging

Kateia,
In a earlier message above, you said:
"My concern is for all of the patients that do not have the support and medications are being changed without anyone knowing not knowing if it’s doing more harm than good."

Good for you! You had such good communication with your mom's doctor and staff at the care facility. It sounds like they valued you and your family as participatory members of your mom's care team, and that your input was part of the shared decision-making when changes had to be made or were being considered. This is the way health care should work. Good for you for pursuing this to make the journey easier for other families and hopefully to change the thinking and approaches used by state policy makers.