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    • CommentAuthorLindylou*
    • CommentTimeJan 6th 2017
    How the heck do you know what is the continuation of the decline of this horrendous disease and what is the horrendous side effects of treatment given for this horrendous disease? And, in spite of the precipitous decline that has been part of our existence since Thanksgiving, why is it left to me to determine that a big piece of this decline is the result of medication?

    It was gently explained to me that they would like to try Seroquel to replace the Ativan that she has been given for anxiety, due to the fact that Ativan doses usually require bigger amounts over time to be effective. Okay I said. No explanation of side effects to me. But she is there daily at the PACE program surrounded by nurses, MDs, rehab specialists, the works. In addition, I am talking to all of them about the decline I am seeing. Suggestions: hospital bed, more help at home, van pick up…….. No one, and I talked with everyone, said maybe its the new med. But it was, at least a good part of it was.

    One night a week ago, my partner refused her meds. No way was she taking anything. And I know the many ways to offer it, and the consistencies to try. I know approach,re-approach. I gave up, remaining fearful because of her seizure disorder.

    The next morning, and for the rest this last three day weekend all I gave her was her seizure medicine. Most important (to me) to get into her. And some of her recent declines began to mend themselves. Not entirely and not all of them by a long shot. Talked to people at PACE, they agreed to my not giving Aricept and Seroquel. Wish I could say it was night and day. Its not. But she is less stiff, can lift her foot higher than an inch and a half, and has stopped these episodes of being unable to walk. And this morning she sang along with the CD.

    Couldn’t write this until I got over my rage at the injustice of everything.
    • CommentAuthorJazzy
    • CommentTimeJan 6th 2017
    I understand your frustration. I've been trying to get my DH's meds re- evaluated for months. They give him the smallest dose of Ativan and the trazadone is not working anymore but if he says no to the changes then it is no and they have no choice but to leave them as they are.
    I have often wondered if the meds are the culprit or the disease.
    Very frustrating.
    I, too, had to struggle for four months trying to convey to the Hospice staff that medication dosages and timings, no matter how raised, lowered, moved around, whatever...simply were not working. For us it was combinations of Seroquel and Ativan...they tried a little Depakote at one point, but it gave him such a severe headache that I refused to give him any more. He needed morphine much earlier than they were willing to prescribe it, and I was ready to tear my hair out that they would not listen to me. I suspect it was a combination of what Medicare would pay for under what conditions, and of course, the problems with opiates and the addiction plague across the country. But trust me, I'm not a druggie nor was DH, and we had bonafide reasons for needing that morphine. My two biggest problems with the Hospice that followed him were lack of aide time and lack of decent medication management.
    • CommentAuthorCharlotte
    • CommentTimeJan 6th 2017
    And when a person is terminal who cares if they get addicted? I find that part of their concern sad - they worry more about addiction than comfort.

    But, yes it is unfortunately our job to know side effects. One thing we have going is the internet where we can research and like at this site get others experiences with a drug.
    • CommentAuthormyrtle*
    • CommentTimeJan 6th 2017 edited
    Seroquel, like other anti-psychotic drugs, can be a life-saver for many dementia patients with behavioral problems. But its use for that purpose is off-label and sometimes dangerous.

    I understand your rage because I experienced similar feelings when this happened to a friend. She was in the early to moderate stage of dementia was put under a guardianship and moved from her house to a nursing home. She was given Seroquel and soon became zombie-like and stopped talking and eating. They diagnosed her with severe dementia and failure to thrive. A new guardian was appointed and ordered tests that showed she was clinically malnourished and dehydrated. The Seroquel was stopped and my friend "woke up" and started talking and eating again. She was re-diagnosed as being in moderate-stage dementia. The new guardian moved her into an apartment with a full-time caregiver and got her a dog. She lived there for 2½ more years.
    • CommentAuthorFiona68
    • CommentTimeJan 6th 2017
    Lindylou, I too hate the anti-psychotics. They took my DH off of Ativan and Haldol over two years ago and put him on Gabepentin (generic Neurontin) for his anxiety/agitation. That has been a lifesaver for us. We have not had to go to the more serious Seroquel and I'm very grateful for that. (He is also on celexa for depression/sleep and kepra for seizures.)

    I know that some people have to try several different meds til they get one that works well for them. If you are looking for alternatives to the Seroquel, Gabepentin might work.

    Sending you lots of hugs and support.
    • CommentAuthorLindylou*
    • CommentTimeJan 6th 2017
    Well I’ve taken her off Ativan (I mistakenly said Aricept earlier) and the Seroquel. May use the Ativan if she has a major panic attack. But I’m finding holding her in my arms and whispering to her is working for minor agitation. She calms down and is not a violent person by nature. Of course, we’re only talking about a week here so I’ll keep you posted.

    That medicine did turn her into a zombie, Myrtle. And while everyone noticed, they did not put 2 and 2 together.

    What I am sorry about is the permanent losses from this episode. I am now afraid to use stairs with her. I am afraid to put her into the car alone. Maybe we could do these things, but I am afraid to try. These losses would come, sooner than later, though. Others, the rigidity, the complaints of not being able to see, the shuffling and inability to bend at all were sudden and were peculiar. The abrupt loss of ability to walk in mid-step was frightening. In these areas she is beginning to improve somewhat. Her vocabulary has increased from “okay”, to actually reaching for words to express herself, even if not successful at it. Best of all, she is looking me in the eye and smiling at me. Her ability to eat in any kind of “civilized” manner has seemingly vanished, alas. And she continues to need standby and assist for walking and transferring. One day at a time, I tell myself, and five more days to respite. And then we see what “after respite” is.

    I am so grateful for your sharing and for your love and support.
    Lindylou, Just curious, does she have Lewy Body Dementia? Sorry if this has already been discussed and I missed it, but her symptoms sound a lot like my husband's. He had been misdiagnosed for years as having AD. It was actually Lewy Body.
    • CommentAuthorLindylou*
    • CommentTimeJan 6th 2017
    Due to brain surgery many years ago, it is difficult to diagnose which brand of dementia she has. We will probably find out after death. She has an AVM, a stroke when she was 26, two different brain surgeries. when she was in her 20s she had clamps, probably metal, cutting off certain portions of her AVM, more recently within the last 10 years or so they inserted superglue to cut off some kind of bleed. More info than you wanted to know.

    She does not have violent tendencies. Her choice has always been to leave when feeling angry. You've probably heard me talking about her running away, and me running away with her. Problems have occurred when on occasion folks don't get out of her way when she is angry and trying to leave to avoid conflict. Also occasional panic attacks. Hence the requests from PACE for medications.

    She is a determined lady (like her spouse). When she refuses her meds, she strokes my face to show she still loves me. For all her losses, memory, ambulation, speech, comprehension, ability to do things or care for herself etc. she still does feelings really well.
    " the rigidity, the complaints of not being able to see, the shuffling and inability to bend at all were sudden and were peculiar. The abrupt loss of ability to walk in mid-step was frightening"....All of this is so reminiscent to me. He had lots of visual deficits. He would be walking and then abruptly stop stating that his foot "was stuck" when urged to continue along. He had a brief time of grasping and then saying he couldn't open his hand. One of his earliest symptoms looking back was a few falls out of the blue. His legs just collapsed. I wondered at the time if he was having TIA's. I am an RN, so I am never bored by too much info. Google Lewy Body symptoms and see if she kinda fits some of them. It is similar to Parkinson's like symptoms. My guy had a TBI in the military that I always suspected might have played a role in his early onset. But as I learned more about Lewy Body...I found out that a large percentage of them had REM sleep disorder. My husband also had that and severe sleep apnea. He had no family history of any types of dementias on either side of his family. The more I read about your gal, the more I wonder if this could be her culprit.
    • CommentAuthorCharlotte
    • CommentTimeJan 6th 2017
    Like many of ours end up having, she probably has mixed dementia. I would think AD, VaD, maybe LBD.
    • CommentAuthorLindylou*
    • CommentTimeJan 7th 2017
    Charlotte, that's my guess, and I don't think it really makes a real difference in the long run. We are starting stage 7 whatever the brand of dementia. All I know is this sweet lady doesn't deserve it. And neither do I. And neither do you and your spouses.
    • CommentAuthorxox
    • CommentTimeJan 7th 2017 edited
    The ALF works around every 6 months to adjust her mess. In general they reduce some meds but then have to increase due to difficulties, but it is still a net reduction. In the past 2.5 years she has had almost a complete change in mess, which has been for the better.
    • CommentAuthorRona
    • CommentTimeJan 8th 2017
    Paulc assume the auto fill turned meds into mess? Hate that auto fill. Having similar experience thought we may have to move Lisa but first step adjusted the meds a few weeks ago a vast improvement, still some issues but big difference. Met again and going to adjust again, not change them but up the dose a bit and change the times. They have been monitoring and find that after dinner when things are more quiet is when she gets agitated then some nights she is up and anxious. Hopefully this adjustment will help even more. For now that is. So at this point we are doing well.
    • CommentAuthormyrtle*
    • CommentTimeJan 8th 2017 edited
    More likely a Freudian slip. (Just kidding!)
    • CommentAuthorxox
    • CommentTimeJan 9th 2017
    Rona, I just noticed "mess" instead of "meds" and fixed it and then read your message.

    Myrtle, I thought the same.

    Improving on the meds (removing them, switching them, changing doses) can all help symptoms but they don't solve the problem. I realized when my wife was calmed down that her base deficits stood out more.
    • CommentAuthorLindylou*
    • CommentTimeJan 28th 2017
    So here is where we are. Back in October (I think) I mentioned to the PACE Team that I was getting very irregular sleep because my partner was getting up at night and wandering around and getting lost in the house. I started barring off certain parts to the house with chairs and a butcher block table. They suggested that Trazadone might help and I reluctantly tried it. It worked. No more night time wandering. But things that I was assuming were caused by dementia decline, continued to get worse. She had increased agitation, stiffening of her body, blurry vision, the grasping reflex I talked about on this page. The Team then suggested switching to Seroquel from the small doses of Ativan she was taking. I said okay, but could we take her off the Trazadone since she was already on heavy duty seizure meds. They agreed.

    Things continued to get way worse, and the period between Thanksgiving and New Years were a nightmare. She could only speak around three words, her body became like a wooden board, she would hold on to me for dear life and I would walk backwards through the house guiding her and then she would completely stop walking alone and I was left dragging her with most of her weight on me. She lost the skills needed to feed herself. Her appetite hit an all time low. I thought okay, this is what dying is. This is the 7th stage of dementia. We will get through this, my partner and I with the love that we share.

    But on the Friday of New Year’s weekend my partner refused her meds. After that I only tried to give her the seizure meds. Her body ceased to be so rigid. She still needed extensive help walking, but didn’t get stuck while we were doing it. She was a bit more communicative. I told PACE no more Seraquel. Eating and appetite remained very poor.

    Reluctantly I left her in respite care for a week at a nursing home and went with my son and daughter-in-law for a vacation which I very much needed in Florida. I came back and faced the intestinal flu bug which she brought home. Then suffered it myself. But that passed.

    What is almost like dementia proceeding backwards, my partners vocabulary is back (it still has no nouns, but what the heck). She is walking independently around the house holding on to furniture as she used to do. She can eat with a fork, and is eating sustainable amounts. The stiffness is almost gone. And with coaching she can voluntarily let go of objects. Its taken about a month for her body to get used to not having these meds. Its called withdrawal I’ve read. But I can say she is back to where she was in October, including not sleeping through the night.

    Maybe its my fault that I did not read the side effects, and thus reject these meds sooner. My lack of sleep led to the Trazadone which led to the Seraquel. But suffice it to say, we are in the last part of stage six of dementia (we meet all the criteria), but we have definitely not begun stage 7. I even brought her out to church last Sunday, a treat for the both of us.
    • CommentAuthorCarolVT
    • CommentTimeJan 28th 2017
    Good news, Lindylou!