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 please Help !!!! 
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Joined: Tue Aug 28, 2012 8:35 pm
Posts: 3
Post please Help !!!!
Please Help !!! Thank God for this site..... My 78 year old Mother started showing signs of memory loss and some hallucinations (kids @ animals) and some delusions , We made an appointment with Neurologist and he did some testing in his office and said she has some Dementia he started her on low dose Exelon Patch and with in 9 days she was trying to run away from home, very confused and agitated so he sent her to Geriatric Psychologist, Who talked us into admitting her to Geri Pysch ward for observation ...... 6 days later she couldn't complete sentence she was paranoid and begging to go home, she did 11 days in ward and I seen the Doc one time..... Several calls and no return calls..... We found out they put her on Zyprexa and Sequel plus left the Exelon patch after we repeatedly told them she got worse since starting .....She was released and taken to Memory unit and has rapidly declined .... We fought with them to stop Exelon and Zyprexa since her symptoms have deteriorated rapidly since they started her on them.... She recolonize me but doesn't know my name..... Can it be this rapid in 2 months???? The day we went to see Geriatric Doc she showered herself , did her hair and got dressed and since putting her in Pysch ward she has gone down so rapid...... My heart is broken....


Wed Aug 29, 2012 10:00 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 188
Location: Portland, Or
Post Re: please Help !!!!
Yes, my mom has deteriorated this rapidly, usually due to medicine changes or a UTI ( which she has right now). You are right to get her off the new meds as soon as possible.I have no experience with the Exelon patch, but anytime there are new meds started and my mom has an immediate downturn, I immediately take her off the new medication, and she recovers back to her baseline within a few days.
Try to find a doctor you and she have a good rapport with (we don't see a neurologist, we are very comfortable with her PCP thus far) and who is knowledgeable about or willing to learn about LBD. Remember that you know your loved one better than the medical providers, and trust your instincts.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Wed Aug 29, 2012 10:30 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: please Help !!!!
Has she been checked for a urinary tract infection? Those can cause incredible declines very fast.

Julianne


Wed Aug 29, 2012 10:39 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: please Help !!!!
Hi, Strawberry. Yes, a medication given in a hospital (Haldol, against our explicit wishes) was the culprit behind my mother's most dramatic decline. And you can't do much about a medication once it is in your mom's bloodstream.

Here are some thoughts:

Do you have your mom's POA or medical POA? If so, you have the right to direct your mom's medical care. If you really believe that your mom is on a medication that is doing harm, call the doctor, of course, but tell whoever is taking the message that you are suspending that medication until the doctor sees your mom again. That's probably what the doctor would do (at least our's did). It's the easiest way to find out if it is the medication that is making things worse. Remember that medicine is an art. It uses science, but every patient is different and no two patients will respond to a specific treatment in exactly the same way.

WWMD? What Would Mom Do if you were the one having a bad reaction? I'll bet that, if she figured you were having a bad reaction to a medication, she wouldn't give you any more of it. You have every right to do the same for her.

If it is too late to get POA, talk with a lawyer about guardianship. Yes. It's hard. But it is the only way to get unchallenged authority over your mom's treatment - and then you'll still probably have to fight.

Make an appointment to see any new doctor for you mom before your mom sees him/her (emergencies are an exception). Ask tough questions and discuss frankly what your wishes are for your mom. Mom did a Medical Directive, etc, as soon as it started looking like it would be needed. We put copies of it in Mom's medical records with each of her doctors and with any hospital, as a part of the admissions process (and then made sure that the nurses and doctors were aware of it). And be with your mom throughout every medical appointment. Some of Mom's doctors really appreciated it when I sat a bit behind Mom and nodded or shook my head to indicate whether what Mom said was what was really happening.

The only doctor that read the MD in depth was actually the geriatrician at the nursing home where she spent her last year. And he started off saying that they are all pretty much the same, but I encouraged reading it and his nurse practitioner did read it in detail and informed him that it was much more complete than most and should be read. This is the value of a good elderlaw attorney and a good medical team (not just the doctor). If there is no doctor who will actually read it or has a nurse practitioner like Mom's, insist on an appointment in which you will go over every point.

I always thought I was strong, but my youngest sister is a lot stronger (junior high teacher - she has to be). Between us, we drove medical staff crazy by wanting to know why they were doing something, what it was for, what they expected to accomplish and insisting on learning to do every part of any therapy prescribed for Mom. Any hospitalization - we took turns being there (along with a couple of Mom's grandchildren) 24/7. The first hospital didn't like it much - until we reminded them of mistakes they had made and suggested that our being there would help them in the long run. The second, and last, time she was hospitalized (at a different hospital), the staff not only approved of our being there 24/7, but they brought in a mattress for us so that we could get some sleep. They were thrilled to have us there because Mom had lost most of her words by then and they had trouble reading her gestures. Good hospitals will bend whatever rules they have, especially when dementia is involved.

The important thing is to be super, annoyingly, involved in every aspect of your mom's care. And don't necessarily defer to the medical staff. Speak with authority and question (with authority) anything that worries you. In the end, you are the decision maker. Be confident in yourself.

Though no two cases are exactly alike, the rest of us probably have experienced something similar. Keep in touch. We can help.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Aug 30, 2012 9:39 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 188
Location: Portland, Or
Post Re: please Help !!!!
Well said, Kate!!

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Thu Aug 30, 2012 10:29 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: please Help !!!!
Kate is so right! I also have been the annoying bête noire to many a hospital and SNF staff. But it's absolutely necessary. And do keep a log of every medication given, the dose, the time, etc. and every other intervention done to your LO. Eternal vigilance isn't just the key to freedom--it's the key to managing Lewy.

Hope you get it straightened out--it's a challenge, that's for sure. I have the advantage [I guess. Sometimes I wonder!] of a nursing background and I can really sympathize with those families struggling to understand all the medications their LOs are give. Hang in there--we're supporting you 100%! :P

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Aug 30, 2012 10:58 am
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: please Help !!!!
Right on Kate! Very profound advice! And trust me, I am the biggest advocate my husband has, and I let those who treat him know it right from the start. I even educated my husband's cardiologist on LBD and he thanked me for doing so and agreed that I was spot on with what I had been telling him about my husband's condition, that it was indeed, LBD.

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Beth


Mon Sep 03, 2012 1:55 pm
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Joined: Tue Aug 28, 2012 8:35 pm
Posts: 3
Post Re: please Help !!!!
Well we have made the decision to bring Mom home, Last night was the 5 th time I've been called informing me she fell again, I have a meeting Thursday with the Doctor this is ridiculous that my Mother is paying 9000 a month and she has fallen 5 times in 3 weeks.... I went there Sat and she was in her room with door closed lights off and another resident in room with her my Mother was setting on bed eating news paper and spitting it on floor....No aides in sight ..... I've had to bath her twice because she was not showered this place is a joke!!!!!! I've have voiced my opinion on the Seroquel and I want it cut down to 12.5 mg qd she's getting 25 mg bid starting dose plus Ativan ( low dose ) and lexapro...... A couple nurses I love there have voiced that they have seen decline since Mom was put on Seroquel.....I pray God gives me the strength to be able to care for her at home ........


Wed Sep 05, 2012 9:44 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: please Help !!!!
I hope you will report these deficiencies to the state. There should be phone numbers posted on the premises. If not, contact your Area Agency on Aging for information.

Certainly, while they won't get the one-on-one care and attention in a facility that they get at home, they should still be looked after 24/7!! Part of the problem is that people don't complain and often families unable to care for their LOs at home feel cornered. I complained to the state when my husband's SNF increased their nurses' patient load by 50%. The state red-flagged the SNF and the SNF had to come up with an acceptable staffing solution.

There may be better alternatives for your mother. If you are able to care for her at home, that's great but make sure you get the in-home help that you need. God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Sep 05, 2012 12:16 pm
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Joined: Fri Oct 28, 2011 1:31 pm
Posts: 29
Post Re: please Help !!!!
I would really consider taking her off of seroquel. My mother saw children and puppies until she was put on seroquel. After seroquel she saw gun men and drug lords. She also fell on seroquel. It was really really the worst medicine my mother had ever taken. Geodon and Zyprexa were just as bad.

We did well on Aricept for cognition. As for hallucination, we just dealt with the children and puppies. It was much better than the alternative.

Ativan was terrible and my mother did better on very small doses of xanax for anxiety.

I hope this helps.


Wed Sep 05, 2012 8:15 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: please Help !!!!
I guess it just goes to show how individual our LOs' drug reactions are. My mother is helped tremendously by Ativan. I don't know what we would do without it.

I agree that it is probably better just to deal with the hallucinations unless they are scary ones. My mother's are almost always benign and actually are entertaining for her much of the time--children, dogs and cats, a lady sleeping on a cot in her room.

Julianne


Thu Sep 06, 2012 10:33 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: please Help !!!!
Same with Derek, Julianne! His delusions and hallucinations seem to give him a life that he's incapable of having with the real world.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Sep 06, 2012 11:28 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: please Help !!!!
Pat,

As with Derek, delusions allow my mother to believe she is doing a lot more than she is really capable of doing. When she relates her stories, they do seem really satisfying to her. We can't stop them anyway so I am just thankful they entertain her.

Julianne


Thu Sep 06, 2012 12:42 pm
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