Stuck (as in, we are stuck)

M1

It will. be four months next week that my partner has been in MC, five since she was hospitalized.  There has been no acclimatization or acceptance of her surroundings; if anything, the MC folks are telling me that her anxiety about not being able to leave is increasing.  They asked me today what I thought about them trying to have a frank conversation with her that this is where she was going to live from now on, as if that would help.

I told them they were welcome to try, but I don't know that it will make a bit of difference.  She was told every day for the last ten days of her hospitalization that she was going to memory care, and that obviously didn't stick; the doc himself said it was Groundhog Day conversations (his words).  On the few occasions that I have seen her (about four since her admission), I have tried repeating that she was there because the doctors said she had to be (what doctor, i haven't seen a doctor, etc. etc. etc.).

Our hospital experience was so negative that there was no way to seek follow up there.  So she doesn't have a geri psych now, and I don't know that I have the energy to find one.  I don't know how I could take her to an appointment in her current state.  I hate to just medicate her into oblivion, but I have a feeling that's where this is headed.

It still just makes me sick at my stomach every darn day.   

MaryG123

I’m so sorry M1.  I understand your reluctance to medicate, but there might be something that would relieve her anxiety without sedating her.  You could discontinue if the effects weren’t acceptable. When you get the energy, maybe you could find a doctor to visit her in MC, even a primary care doc, for an opinion.  Hang in there!

abc123

Dear M1,

I was just thinking of you both. I am so sorry to hear this news. It’s heartbreaking for each of you. I was truly thinking she would be easier to deal by now. I’m so sorry. I don’t know a lot about the different types of meds used for situations like hers because I never had to deal with it. I’m wondering if a total change of all her medications would be a possibility for a better outcome? I am a firm believer in the use of medication when it can help someone. I’m so sorry this is happening. 

June45

M1, your pain and frustration are reverberating off the page. I am so sorry that you are continuing to deal with this situation.  Sick to your stomach every day...I get that.

Quilting brings calm

M1-  I understand that you don’t want to medicate, but  that’s really the only option since she can’t remember, understand or process the conversations. There is surely something that can improve her mood, and possibly allow them to get her unpacked.  

My mom just got switched from Xanax to Zoloft.  The mirtrazipine will stay.  The psych resident tells me that Zoloft is easier in the elderly and those with dementia and it is often combined with mirtrazipine.  She consulted with an attending between the consult and the prescription change.  There’s really no counseling option  for mom’s anxiety and depression as she can’t remember conversations either.  I repeatedly answered the same questions daily about the appointment beginning  10 days prior to it. Who is this doctor? Why am I going? What is it for?  Who wanted me to go?  Etc and etc. 

Now, does that mean the MC should not tell her she’s staying ?  Well that would depend on her reaction to it when they tell her.  Obviously there’s nothing to be gained by upsetting her every day over and over.  However if being told it allows her to relax for the rest of the day, then let  them go for it. Let them do it rather than you.  

M1

She's on Zoloft and Seroquel; the Zoloft dose was recently increased.  And there are primary care practitioners (NP's with good MD backup) who see her there.  I don't think there's a visiting geri pysch though.  I guess the Seroquel could also be increased, but she's not delusional, and she's not hallucinating.  It's tough.

Stuck in the middle

I'm sorry to hear this, but not really surprised.  You have consistently described your partner as a strong, intelligent woman, exactly the sort of person who does not accept care gladly.  Sorry.

ImMaggieMae

M1, I’m so sorry to hear your DW is still not settling in after 4 months. You mentioned that she is taking Seroquel, which seems to be effective for a lot of the LOs of people on this forum. Perhaps an increase in the dose would help. That was the first antipsychotic med that was prescribed for my DH for obsessive repetitive behaviors and worked for a very short time but then stopped working, even with an increase. During a week long stay in the hospital the hospital psychiatrist put him on Risperidone (after trying a few other drugs that sedated him into a stupor). The Risperidone settled the agitation within the week, actually after a few days. He had one dosage increase 8 months later. The only other dementia med he takes is Memantine. He doesn’t have hallucinations and unless you count repetitive behaviors as delusions, he never had those either. 

 The Risperidone doesn’t “medicate him into oblivion” although it does allow him to sleep all night. He sleeps about 9 - 10 hours at night. Prior to dementia he slept around 8 hours a night. He’s alert during the day and up and around, much more personable than he was prior to the drug when he was just bouncing off the walls. He has never been aggressive. Everyone is so different, but maybe this is something that would help your wife.

loveskitties

M1, while I have no medical background, I did read that one of the less common side effects of Zoloft is increased anxiety.  Since you mention that it was recently increased, is it possible that it may be contributing to the current situation?

Since the current medicines don't seem to be helping, I agree that taking her off all and starting from scratch might be considered...either new ones or lesser dosages.

Just tossing things out there...wishing that for both your sakes a combo can be found to make the situation better.

jmlarue

It has helped my DH for me to more more proactive with the doctors in charge of his meds. Granted, I'm primarily dealing with Geri-Psych doctors and believe your partner would be better served if she had an established specialist doc to handle prescribing/adjusting psych drugs for her. Just my opinion - 4 months is an awfully long time on one particular drug therapy with slow titration that doesn't seem to be meeting your partner's needs. My DH's Geri-Pysch docs have been good about listening to my assessment of whether or not a particular drug is having good effect or not. When the antidepressant started failing to ease his anxiety, they were quick to increase the dose or to switch to a different drug altogether. The same goes for the Quetiapine (Seroquel). When it failed to have real benefit at the initial low dosage, they didn't hesitate to titrate the dosage upwards in small increments almost weekly. They tell me that if it is not effective at what they feel is maximum dosage, they will likely switch to Risperidone for the hallucinations, agitation, and paranoia. I do feel like you would benefit from having a relationship of mutual respect with a specialist doctor who has the experience and confidence to manage these psychiatric meds without undue hesitation.

I can understand your reluctance to see your partner sedated into oblivion. No one wants that for their LO. However, I have come to accept the fact that his current state of anxiety and agitation is no picnic for him, either. In his right mind and given the choice, he would choose sedation over remaining restless, anxious, angry and threatening to all and sundry. You know your partner best. If your partner could choose, would she be content to remain in her current emotional state or would she prefer to take the occasional nap to get some respite from her torment?

storycrafter

Very sad to hear what you're dealing with.

I just share our experience with the drugs to add perspective and awareness of possibilities. Every body is different and it's trial and error. 

Zoloft increased my husband's anxiety and jitteriness/agitation. Seroquel is given for other reasons besides delusions/halucinations. My husband doesn't have them and it's been what keeps him functioning on a more even keel and without the extreme impulsive, bi-polar type behavior. It did take a long time to gradually increase the med to a therapeutic level because at first it caused drowsiness. That passed after a couple weeks, though, and was worth the effort to ride out the temporary side effect.

Sending supportive wishes that you and your partner both get the help needed.

M1

Appreciate all of your thoughts and suggestions. I'm not completely convinced it's a medication issue at all though. Like Stuck said, a lot of is personality and temperament. And that's why I'm reluctant to just jack up the meds. I just don't see an obvious solution here.

White Crane

Dear M1, no wise words or advice about medications.  Just know how sorry I am and that you are in my prayers.  Sending hugs.

Brenda

Ed1937

M1, it's hard to find words for what you and she are going through. I wouldn't begin to suggest what might need to be changed, but this reminds me of the old saying, "you can't continue to do the same thing, and expect different results". I have no idea what needs to change, but there must be a way to get help. I'm really sorry it has been so darned hard for both of you.

Jo C.

Dear M; Ed and jm and others are really giving good input.  It has been five months - that is a lot of time with no ease.  Not only are you affected by not being able to see the one you love so dearly, but the real issue, the main one, is that she is suffering; her very quality of life is affected.  She carries those gosh-awful feelings and turmoil inside herself every single day into night without relief; due to that she also has lost her relationship with you. 

While I am not a physician, it appears it may well be that it is past time to get her re-assessed.   It is not only just about what had been her basic personality; that is certainly not all of it, it is also about the very real impact the disease has had and is having upon her brain.  She is caught in a despairing loop and could likely benefit from help.

I am sure you would love nothing better than to have her relieved of the dreadful internal space she is living in - but to do that is probably going to take an actual dementia specialist. If you cannot access a GeroPsychologist, perhaps you can access a good Neurologist who sees dementia patients as a routine part of his/her practice.  It may be a bit difficult to get all arranged, but unless done, it is likely that things are going to stay in the same sad state.  Too bad there is no GeroPsychologist to make facility visits.  Have you checked on that.

She cannot reach out to find help for herself, she must depend on someone else to do that for her.  The meds appear to perhaps have need to be reassessed for effectiveness after all of this time. It may be that she would benefit from a change in her meds or adjusting the ones she is on; just a thought/guess. Re-assessement by a specialist seems to be key.  It will take a specialist and not the visiting NPs to best determine present state and needs, and no; she does not have to be, "drugged out of her mind."

My LO, and I know my LO is different from yours, lived in the seven circles of hell with the dementia induced beliefs and being unsettled; my LO was a very strong, independent personality.  GeroPsych; different ones over time, prescribed antidepressants and a prn tranquilizer.  No help.  Life for my LO was 24 hours of suffering the feelings and internal strife; awful.  I made a change to a good Neurologist who sees many dementia patients as a routine part of his practice. After thorough exam and assessment, he prescribed Risperdal which I did not want to do and initially did not approve.  Finally; I did consent as it was about the quality of life. To my utter astonishement, my LO, within 48 hours became a different person. It happened so fast, I thought it was some sort of artifact; but no, all the acting out and all the horrible feelings were vanquished. Was it 100% perfect?  No; but amazingly, dramatically better. My LOs quality of life was reasonably restored.  What was heartfelt grateful was to see that there was no longer suffering and was pretty much content.  There was NO sedation, no inability to move, etc.  Just ever so much more calm and at ease without the overwhelming beliefs/thoughts that had been the negative drivers.  My only regret was not having approved that change sooner.  Later; she needed as bit of uptick in doseage; but once again, no negative effects.

That is only one person's story and other individuals outcomes can well be different.  I so hope you are able to find a way to manage to get her to see a dementia specialist; that seems to be the key to where you are both stuck. I send best wishes to you; it has been a long time and you have been trying so hard, may success come soon.

J.

ImMaggieMae

Jo, I posted above about the Risperidone, but agree that it is like a wonder drug for my DH and the change was very quick to happen. We finally, after 7 months of waiting and an urgent referral from a primary care doctor, got an appointment with a very good Neurologist at a large university medical center who specializes in older adults with dementia The first appointment was after the hospital doc increased the dose. He agreed with the medication and dosage, and said, like you did that the small risk was worth it for the quality of life improvement. Everyone is different, but it sure is working well for us. And the Risperidone is a liquid, so it’s easy to adjust the dosage.