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Old 12-21-2007, 11:28 PM   #1
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Unrelenting screaming

Six months ago my mom was diagnosed with final stage dementia and declared palliative (failure to thrive). The doctor and home care nurses agreed it would be a mere matter of weeks before she succumbed.

Mom obviously had other ideas because she slowly but steadily turned that situation around. Although still bed ridden, her vital signs are remarkably good. As her daughter, I should be thankful. Unfortunately, she hasn't the foggiest notion of who I am. In fact, in her fragile, demented state, she looks upon me as the enemy. Well, it seems that way because she curses me on many occasion. Fortunately, she has been known to break the pattern and becomes quite loving towards me. I live for those moments.

But what's the primary problem? My mom screams-----often and frequently non-stop for up to an hour. Then she stops, rests, and then begins anew. She seems incapable of answering any questions (however simply phrased), but will scream at you if you do something she doesn't like (generally to do with personal care). She screams by day and by night.

I've tried on some occasions to ignore the night screams, but within a few minutes of mom's nocturnal blast-offs, I have to get up to find out what's troubling her. Occasionally, she's looking for a drink of gingerale (she refuses to drink water) or she needs to be changed. However, 80 percent of the time it appears that she's screaming for nothing (dr. doesn't think she's in any pain).

I am at home with her 24/7 and I'm beginning to burn out. Despite trying Haldol, Respiridol, and a few other anti-psychotic drugs, nothing works. Even Adavan is useless.

Does anyone have any ideas of how to combat the screaming? At times when I am at wits' end, I threaten to buy a set of ear plugs. Things got so bad the other night that I cranked up my bedside radio to drown out the screams. Within a few minutes I was asleep even though the music was blaring into my ears. Go figure.

I'd love to hear from anyone who's experiencing the same sort of thing; and if any of you have some ideas I might be able to use, I'd really appreciate it.

 
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Old 12-22-2007, 02:56 AM   #2
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Re: Unrelenting screaming

I was the enemy too, as long as I lived with my Mom. She got dementia in around 1999 and I moved in with her from 2000 to 2005. She resented my presence, and was irritable more and more as her dementia got worse. She began to do not only bizarre but dangerous things, such as leaving something cooking on the gas stove and forgetting it, burning a piece of toast in the toaster oven nd not remembering how to turn it off (I was home and came to the rescue, luckily), forgetting to bathe or shower herself, saving bits of old moldy food and throwing out new items. She never had those screaming sessions, but there were times she got up in the night, shone a flashlight in my face, and told me to get out of her house.

I see that screaming as a state of total frustration because she either cannot express herself any more or is unable to do all the things she used to do and wants to do but cannot. There must be medications which could calm her down.

As for your burnout - I was there. It was increasingly impossible for me to deal with her, I got sick, depressed, and worse.

My 5 years with her began wonderfully and ended as a long drawn out nightmare. I almost lost my sanity.

Now Mom is 99 and in a nursing home, on hospice care, close to death. It was a long hard journey. I learned a lot - but I wouldn't wish this on anybody. I should have moved her to the NH years earlier. My siblings did not agree. They found it wonderful that I lived with her and did all the care.

Good luck to you - and pease don't put off nursing home care. We used up Mom's own savings within 3 months, then Medicaid took over. We had to pay a lawyer to get all the forms filled out right, so she would not be rejected. She is as well treated on Medicaid as she was as a private paying patient.

Love,

Martha

 
Old 12-22-2007, 04:30 AM   #3
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Re: Unrelenting screaming

Ahhhhhhhhhhhhhhhhhhhhhh

Behaviours.

Unexplained, irritating, distressing behaviours.

I know of a nursing home, where there is one little lady constantly (and I mean, constantly) calling out in a high pitched wee voice "nurse", along with a gentleman in his deep voice calling out "nurse" (same time) along with another little lady who constantly tells those two to "Shutup, can't you see the nurses are busy?" along with another lady who screams out constantly like a crow.

And if they get yet another lady started who get's highly distressed and calls out "bloody, bloody, bloody daddy, daddy, daddy......." it sounds like a complete and utter circus.

Medications have not helped ANY of these people. These are behaviours and can be modified but until they 'step down' into a further part of their dementia, nothing can be done except to put in interventions.

For the little lady who calls out in the high pitched voice, she is toileted every 2 hours and often complains she's breathless (if she stopped calling out, she might find breathing easier????) But that's it. She still calls out, but there is nothing we can do for her. She doesn't even know she's doing it.

The gentleman on the other hand, says he's calling out to a) go to the toilet or b) go to bed. He doesn't want to do anything else except those two things. He doesn't even know he's doing it half the time.

The one who tells them all to shut-up, KNOWS what's she's saying, but she can get 'wound up' by those who constantly all out and then out of the blue will start abusing anything and anybody that is near her. She's one of the good ones !!

The "Crow' however, on starting her screaming, is sent to her room. Sat in her recliner chair and the room darkened, and a movie put on.

Guess what? she still screams. We give her food/drink/toilet ... and guess what? she still screams. This is a NEW behaviour, because she hasn't done this until the last 4 weeks. what's changed? Have no idea.

Can't wait for her next step down !!!!

And for the other lady who calls out "bloody, bloody, bloody daddy, daddy, daddy......." Nothing can be done for her except to knock her out with medications and they only work 1/4 of the time. She has to work herself into exhaustion.

Sad isn't it?

As for my own experience, when caring for my ex-charge, she too saw me as the enemy. She believed I was out to get her husband (he had lung disease and I was also caring for him), she believed I was steaing, or that my kids were stealing .. she would hit them and one time, I woke up to find her leaning over my bed with a knife.

Scared doesn't even begin to describe the feeling.

I've also known many MANY people who we believed were on 'deaths door' only to bounce back full of life and last for a good 2+ years!!!

It's not easy ... but it will ease. Don't put off thinking about a nursing home sooner rather than later, they have a lot more options than home nursing does.

Cheers

 
Old 12-22-2007, 11:34 AM   #4
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Re: Unrelenting screaming

Oh, you are both virtual dears for responding. Yes, perhaps I should look into a nursing home but then I would feel compelled to visit her daily to ensure that she's being well looked after. I do believe the constant visiting would be more exhausting. And then I have issues of abandonment and not living up to my self-imposed commitment to look after her to the end. But I guess when push comes to shove and I find myself heading down the tube so to speak, I will have to take a really good look at the suggestion of you both gave me.

I'm glad I found this site--a little venting falling on the "ears" of those who've been this way before me will be a saving grace for sure. I have to say, though, that I do tend to see a good deal of humour in mom's behaviour. But when she digs in for those interminably long sessions of screaming, my sense of humour just ups and leaves.

Thank you both once again. Your history of care giving tells me your stalwarts.

 
Old 01-03-2008, 06:42 AM   #5
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Re: Unrelenting screaming

Obviously this idea that ALZ patients die with 5-10 years from ALZ is wrong. Look at all the ALZ patients who are fine physically and living in hell mentally to a ripe old age.

I would medicate her into a state where she can be managed and you retain your sanity. Are we supposed to lose our lives and sanity along with the patient because of this hellish disease? Hopefully there will be meds soon discovered that can stop the progression or treat it. Because with baby boomers getting older---man I don't know what will happen. The company that discovers and manufactures a cure will make sooo much money...it will be the kind of med that everyone over 60 will want to be on as a preventive.

Boomers have raised a generation of 60s kids who are not as willing to give up their own lives to taking care of a ALZ parent. and then the next generation is even worse.

Bad news for all of us if something is not manufactured to stop this progression. Has anyone noticed it is on the rise? Ever wonder why?>??

 
Old 01-03-2008, 07:04 AM   #6
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Re: Unrelenting screaming

I don't think it's on the rise, and yes, it does eventually kill you. We see more of it because it is no longer cnsidered inevitable, and the sick person hidden in some attic. Since no one is a stay at home wife or mother any more, there is no one home all day to ''watch out for Aunt Alice." So the nursing homes are filling up.

My mother lived to be 99 but the memory problems didn't really get bad until she ws 94. Yes, AD killed her - because if she had been alert and mentally fit enough to do the rehabilitation exercises after her hip fracture 2 years ao, she would have remained mobile, her legs would not have become full of open sores due to lack of circulation, her heart may have remained stronger for a few more years.

All this is irrelevant because she died last week, and yet it is a mistake to think a person of 60 will get this disease and live to be 90. Eventually the patient forgets how to eat, how or when to swallow, drink, etc. Because none of their families would ever agree to putting them on machines for breathing and feeding - for decades - they do die of Alzheimers.

I'm with you in my hopes for a cure, preventive etc. If they ever do come up with a vaccination, I will be the first on line! Yes, there will be billions made by the pharmaceutical industry -- but it is IMPORTANT! Too bad they didn't work on this earlier, instead of fad drugs like Viagra. Nobody ever died of impotence.

Martha

 
Old 01-03-2008, 02:04 PM   #7
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Re: Unrelenting screaming

Martha that was a good post and I agree so much about viagra. Give me a break. Here we have a disease that is causing such dismay and sadness and it will affect directly or indirectly ALL of us. Why? because our taxes will have to go up to support medicare & medicaid which will have to be used to take care of the overflow. And have you seen the prices of nursing home care?

My mom tried aricept and it made her worse! but they said that might happen if her problems were not caused by ALZ.
The neurologist told us that most likely her dementia is caused by scar tissue from small strokes. This is what the MRI showed a couple of years ago.
A rose by any other name...is still a rose.

 
Old 01-03-2008, 06:09 PM   #8
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Re: Unrelenting screaming

Quote:
Obviously this idea that ALZ patients die with 5-10 years from ALZ is wrong. Look at all the ALZ patients who are fine physically and living in hell mentally to a ripe old age.
The 10 year 'span' is just a ball-park figure of average. Because each person is unique both mentally and physically, you will find it's not a 'timeline' and that on the 10th year the end will come .. but by the 10th year the end SHOULD COME because by 10 years of AD they will be a breathing vegetable.

I think we're finding it more and more prevalent now-a-days because what used to be "that funny aunt or uncle" that your mother warned you not to get too near had Dementia, but because there was almost always somebody home, and families lived next door to each other, they were easily supervised. Not so now-a-days with our busy life-styles and families living thousands of kilometers apart (or countries apart!!) Unheard of in the 'early' days!

And yes, because of the family diversity, the nursing homes are filling up. It's also a lucrative business !!

And then of course, we've got the entire RANGE of dementia's .. pick's disease, multi infarct dementia (golfhat, that's your disease of the week), parkinsons, alcohol related dementia ... the list is GROWING each day because our lifestyles are wearing our brains out!!

Like I used to say to my lovely little man (deceased) ..... your brain just got too full of memories to remember anything else! And THAT is plain ol' every day Aged Dementia (no causes ... just happens)

Just this morning, a Registered Nurse at work mentioned she's doing more crosswords and keeping active to keep her brain at it's maximum potential so she doesn't end up like 3/4's of our residents. I told her about my MIL .... could do the Times Cryptic Crossword in under 2 minutes, did Yoga, ate well, exercised religiously, and yet, she was struck down with a nasty nasty dementia that changed her entire personality! She did EVERYTHING the experts claim we need to do to keep Dementia at bay.

The RN said "sigh. Why bother" and promptly ate a biscuit (sugar, fat .. bad bad bad LOL) forgot the answer to a question and put the crossword down.

*sigh*

 
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