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    • CommentAuthorAug44
    • CommentTimeDec 4th 2017
     
    Thank you for the warm welcome into this community! I hope some of you can share some insight regarding my DH’s condition. My previously gentle DH and I have been together since sophomores in college and have been blessed with a marriage full of humor and love. I am 75 and in poor health. My most recent issue involves upcoming spinal surgery so I’m not able to spend as much time with him as I’d like.
    His neurologist says DH (Alz and Parkinsons) is late stages (probably late stage 6) and that it’s not worth bringing him into the office anymore. A 4 on the mmse is a very generous guestimate.
    Despite this, he is amazingly aware and cognizant. He knows home and all his family and friends (maybe difficulty coming up with right name). He has been throwing tantrums since placement approximately 7 weeks ago wanting to leave the facility. He rolls on the floor, throws things, screams and cries. He is being treated by the resident psychiatric doctor and is about two weeks into building up to 150 mg. of Seroquel daily with Xanax as needed on top of his other meds.
    Do others have similar experiences? How long does this level of awareness tend to last when scoring so low in reasoning, low sequencing (can’t follow any 2-step instructions much less many 1-step requests.), and doubly incontinent (doesn’t usually recognize signals of needing to go and doesn’t know how to address wiping and the like).
    What hell is this when I must pray for less awareness with hope he will find some peace.
    • CommentAuthorlindyloo*
    • CommentTimeDec 4th 2017
     
    Aug44, I want to tell you how sorry I am for you and your husband's hard times, and to let you know that I will keep you in my thoughts and prayers.

    Many people on this website have had experience with psychotropic meds. I started a post myself (now located on page 7) regarding my experiences with my partner being given Seroquel. It is labeled "I know medicine is part art and part science, but gee wiz". I think the title of the page may need to be your focus. These meds can all do wonderful things for some people and awful things to others. It truly is trial and error that physicians use until they find what works for a given individual. And it can be hell waiting for the doctors to get it right. You will have to be his advocate. And if the meds are not working after a sufficient amount of time or you notice physical side effects, you, who know him best, will have to speak up and fight for him. Others on this site will be jumping in soon with their experiences and suggestions.
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      CommentAuthormary75*
    • CommentTimeDec 5th 2017 edited
     
    I agree with lindloo*. i wondered why my 90-year-old husband was stumbling and "out of it", and by asking the nurse if she had given him some new drug, found out she was giving him Seroquel. It had been a PRN order (give when necessary) ordered when he had been first admitted 2 years before. Her reason? "He doesn't like to take showers." I got on the phone pronto to talk to the doctor, and that was the end of that.
    These phases come and then go, to be replaced by the next stage of the disease. You just do the best you can. "This, too, will pass."
    • CommentAuthorWolf
    • CommentTimeDec 5th 2017
     
    Welcome Aug44. That level of cognizance may not be all that unusual at roughly a stage 6 where the disease came about when we were senior citizens already.

    The reactions to not wanting to be there at first are common and it's a little bit like watching a child display their feelings. It's very understandable that he feels this and it usually passes within a few months. Partly because the staff tend to nudge meds towards a more stable balance but partly because they get used to being there.

    Be careful what you wish for (I say this with serious sympathy for your no-win situation). He still has this level of interaction with his world and the day will come when he loses that and after some time we come to understand a little better the trade offs that existed earlier.

    With your own health to deal with, these choices are really the only road and as awful as it is, we have no choice ourselves but to try to make the best of it as we can.
  1.  
    Welcome from me, too, Aug44. I think what will have to happen is that they will keep trying medication adjustment until they find the optimal prescription(s) that will control the behaviors. It is pretty clear that you yourself are limited in what you can do, so you'll have to leave it up to his team. But as LindyLou said upthread, you are the one who knows him best, and will probably realize before anybody else what effect the meds are having and whether or not there are undesirable side effects. So you'll need to spend enough time with him to be able to observe him, and to communicate with the staff about the meds...i.e. be his advocate. With my DH we went through a nightmare of adjusting doses of Seroquel, Ativan, and Depakote. The Depakote gave him an incredibly bad headache, and he wasn't able to take it for that reason. But I'm not sure the staff would have realized that he was in a lot of pain if I had not told them. I mean, he probably would have complained, but since he was so demented, they might not have taken him seriously. But I knew, and was able to get the Depakote discontinued. Another thing to be aware of--since he's only been placed for 7 weeks--is that different shifts don't necessarily communicate well with each other or with the doctor. So make sure your input is heard by the right person and by the ones who can make the interventions. You most likely need to be communicating with the day shift charge nurse and/or his doctor on rounds. Others whose loved ones were/are placed can probably make better suggestions about this. But don't assume that something you tell the aide or even the evening nurse at 8pm is going to be relayed to anybody. It might be, it might not be. You have to really stay on top of the staff...without being a pain in the neck or the dreaded "bad family member."

    I forgot to say that I managed--just barely--to keep my DH at home, with Hospice in place. But I was 25 years younger than he, in good health, and a nurse with 40 years experience, half in hospital work, half in home care. I left the workforce at age 63 to take care of him. It was a killer of an experience, that's for sure. For Alzheimers families, placement is usually the only way, for a whole host of reasons. As I'm sure you know from your own situation, you can't let the disease get both of you.
  2.  
    Aug44, relative to elizabeth's advice about needing to stay on top of the staff without becoming the dreaded "bad family member", I can recall someone advising, years ago, that occasionally bringing small treats or flowers or whatever for the staff to show appreciation for their care actually worked wonders in ensuring better care for their loved one. Makes sense to me, although I never had to deal with placement myself.
    • CommentAuthorAug44
    • CommentTime7 days ago
     
    I can’t thank each one of you enough for your words of wisdom and comfort. Between your thoughtful responses and reading Lindylou’s insightful thread, I feel more grounded. Time to face the issue with less emotion.
    The ideal would be to have DH at home with full-time care, but for reasons too numerous to list, it is not possible.

    I have been working with local DD and a care manager nurse who are helpful with observations and communicating with staff – but you’re right about it being a challenge.

    It seems his behavior needs to be addressed to prevent him from being kicked out or sent to a psych ward – both of which would probably cause the horrendous PTSD like symptoms we saw in the hospital and rehab stays.

    I believe the Seroquel is having some negative affects in relation to his gait and balance. And fear (along with the care manager who has known us for a few years) that the Seroquel may be having a negative effect mentally – although he seems a bit easier to distract temporarily. A caregiver from the MC called me yesterday to let me know that he threatened to kill someone if he couldn’t leave. He will not, for instance, get a knife and hurt someone (at least at this point)– I believe that threat is to communicate his level of despair. However, I do worry about him inadvertently hurting someone during a tantrum.
    With constant reminders, he accepted that he was in the rehab facility and the MC to recover from his recent gall bladder removal. However, weeks out from the surgery, he no longer accepts rehab as an excuse. I believe to some degree he is realizing this place is his lot and he plain out does not want it and does not understand it. He does not understand he has ALZ and PD. He doesn’t grasp my health issues. I also understand that he has lost much control over his emotions. Doctors have told me “he is just still too aware” – so I assume medicating him until he accepts the MC will be necessary. I wouldn’t want this to be my lot in life either…

    Thanks to all of you, I am more aware of how important the role of advocate during the medical trials is and that it is a painfully long process of trial and error. DD, care manager, and I have an appointment tomorrow with the MC manager. My appointment with the spine surgeon is this afternoon. Heartfelt thanks to you all.
    • CommentAuthorlindyloo*
    • CommentTime6 days ago
     
    Aug44, Seroquel impacted my partner by making her body very stiff, unable to walk independently and sometimes she would stop being able to walk at all mid step. Do make sure his doctor is aware of his gait and balance changes. I know that this does not happen to all, and my partner was also taking strong anti seizure meds as well which may have had an additional impact.. Best wishes. I know this is not an easy time for you.
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      CommentAuthormary75*
    • CommentTime6 days ago
     
    Aug44, you wrote, "However, weeks out from the surgery, he no longer accepts rehab as an excuse. I believe to some degree he is realizing this place is his lot and he plain out does not want it and does not understand it. He does not understand he has ALZ and PD. He doesn’t grasp my health issues. I also understand that he has lost much control over his emotions. Doctors have told me “he is just still too aware” – so I assume medicating him until he accepts the MC will be necessary."
    I think that this is eactly right. You've put into words what I happened with my husband. There was nothing I could do that would make it easier for him, but I had to believe that the fact that I was there with him counted.
    It's not an easy journey, but we are all here with you.
    • CommentAuthorAug44
    • CommentTime6 days ago
     
    Lindylou, thank you for the kind words and advise. I will monitor closely and be sure to communicate with the doctor efficiently. I’ve seen threads about monitoring and charting which I will look at more closely.

    Mary75, I really appreciate your affirmation. It does appear this is the route we'll have to follow. Do you mind me asking how long it took to find an appropriate balance of medication for your husband?
    • CommentAuthorRona
    • CommentTime6 days ago
     
    Welcome Aug44 sometimes I wonder if they ever get the meds right or if it just an ever hanging landscape. Lisa has been in care now for just about a year and a half sometimes she seems better sometimes not. By better I mean not anxious or afraid. However she still always says she is afraid and still does not like being near any other residents. Hard time to just get her to sit and eat anything just spits everything out, except fruit and sweets. I don't know if there is any medication that is going to change that. Sad state of affairs when you wish that she was farther along where she is totally unaware of her environment and more at peace. Tough journey.
    • CommentAuthorAug44
    • CommentTime5 days ago
     
    Rona, thank you. I’ve been thinking about what Wolf wrote about being careful what you wish for. Today, I believe that I don’t want him in this emotional agony. If I could see an occasional smile, maybe I would feel differently. I already miss what he was and we were in early August.

    After today’s meeting with the caregivers at MC (MC floor manager, facility executive, and head nurse), we’ve agreed Seroquel is not working. I was told that their in-house doctor and psychiatric doctor agree that Depokote is the next drug to try. I understand it is a different class of drug from Seroquel so they’ll be able to wean him off that while starting the Depokote. I gave them the ok and I will research.
    •  
      CommentAuthormary75*
    • CommentTime5 days ago edited
     
    Aug44, sorry to be so slow to answer. His family doctor discontinued the p.r.n. seroquel.
    I went into the care facility to help DH with his shower for several months. Then we reduced the number of showers per week from 3 to 2. No other medication was ordered to calm my husband. He calmed down on his own.
    In time, I did have him taken off Aricept because the adverse GI symptoms he experienced were greater than any noticable benefits (in my opinion).
    As Myrtle has said, we know our husbands better than the staff, which does change.
    • CommentAuthorbhv
    • CommentTime5 days ago
     
    I forgot to.ask hb doctor if the.Aricept could be causing troubles. He has been on it for 3 years I think. Am thinking of stopping it. Mary, did your hb's gi trouble start after he had been tolerating it? Did you wean him off it?
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      CommentAuthorCharlotte
    • CommentTime5 days ago
     
    Yes, Aricept and galantamine, probably Exelon, can all cause intestinal problems. They cause the stomach to secret more acid which is why so many have stomach problems on it. That added acid can cause diarrhea. Aricept is also known to cause behavior problems. It is weird because some it causes behavior problems others they will put them back on it to calm them. Just like all drugs, we never know how drugs will affect anyone until we try it.
  3.  
    My husband had terrible GI problems from the drugs. I gladly stopped them when it appeared they were not helping cognitively and making him physically miserable (and me too).
    •  
      CommentAuthormary75*
    • CommentTime5 days ago
     
    bhv; dh did tolerate Aricept for 3 years, but then he began to lose his appetite and weight. I had the Aricept discontinued because of its known GI side effects, and I hoped discontinuing it would help his appetite. It didn't. He continued to lose weight. His diagnosis on death was,, "Failure to thrive."
    • CommentAuthorRona
    • CommentTime5 days ago
     
    Mary75 "failure to thrive". Wow what a term. I wonder often about Lisa. She gained weight for awhile simply from not being as active now she has been loosing it as she just doesn't eat. Can still get juice into her and fruit sweets maybe but that is about it. Porridge in the morning they started Putting a package of hot chocolate mix in with it and that works. But really I wonder if she is just going to fad away "failure to thrive". I continually try to get her to eat and then sometimes I think what is the point? If she doesn't want to eat why keep trying to get her to eat? Why keep trying to keep her going why continue this agony? Then I think that is an awful way to feel.
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      CommentAuthorCharlotte
    • CommentTime5 days ago
     
    Rona - not an awful way to feel. If a person is having chewing or swallowing problems, then probably one would easily choose to do whatever they can to help. But when they flat out refuse, is it because it doesn't taste good or the texture? Or are they in the dying process?

    Where she is eating the porridge with the chocolate could be nothing taste good to her or at least not good enough to eat. I think almost everyone here whose loved one has gotten to the place you are has to deal with the decision. There are drugs that can increase appetite. Nikki went as far as fighting to get Marinol for her husband because the others didn't work. It is a personal and tough decision. I think if we know why they are not eating it would make it easier.
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      CommentAuthormary75*
    • CommentTime4 days ago edited
     
    Charlotte, I wonder if it's because their brain forgets how to. Rona, I understand perfectly what you're saying.