Hatred of many things

What is up with hating everthing? Do most AD folks say this even though it's not the case? Is it a metaphor for something else? If so, then what?

If you ask my mom if she would like chicken she'll say 'no, I hate that - it makes me thow up'. Quite frustrating The other day I said 'well there isn't much left that you do seem to like, so which would you like - chicken or fish?' Of course two minutes later she's forgotten what she hates & eats whatever I serve.

Edited January 31, 2013 at 1:09 pm

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It is easy to understand forgetting a phone number or the name of an old friend from high school but it is much harder for us to understand the complete destruction that goes on inside an AD mind. Alzheimer's Disease is MUCH MORE than just "forgetting"!

Gone are entire language skills. Words, word meanings, entire concepts. They have an idea in their head and (hopefully before they forget what they want to express) they have to search for the correct words to express that idea, and then have their mouth & throat make the sounds. All very easy when you can do it but actually it is a very complex skill.
The things they actually say have less and less real meaning. Words or not, they become nothing more than random sounds & phrases.

Then when you factor in that AD destroys their entire personality and you should expect to see changes in likes, dislikes and preferences that have been consistant over an entire life.

AD also destroys how the eyes perceive the world (remember the eyes dont 'see' the brain does) and how the fingers feel and even how the taste buds sense food. NOTHING makes sense to them!

It is VERY HARD for us normal people to get into a demented mind. Sometimes it is completely impossible and all we can do is say "yes, I understand" when in fact there is no way we ever could. This feedback can satisify their need for the few moments they have that need and then the best thing to do is recognize that very quickly their need will be gone and not struggle to try to continue to meet it. You know about taking life one day at a time, when working with an AD person commonly it is just one moment at a time.

As a suggestion you should read "Understanding the Dementia Experience". It is probably the best thing ever written to help us understand what is happening inside their head. (link below)

http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20D ementia%20Experience.pdf

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m-man was just wandering if your wife was on any medications. currently my wife who turned 58 this week is on 23 mg of aricept and 20 mg of namenda 10 in am and 10 at night, also i have read a couple of your other post and you seem very informative our you in the medical field

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I relate to this hating food that they have eaten all their lives. I seldom ask my husband to chose what he wants to eat. I just ask him if he is hungry and he eats what I fix him. If I give him a choice, he hates everything. I liked reading this article so much. Thanks so much m-mman.

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Yes she is on both Aricept (10mg bedtime) and Namenda (5mg twice a day)
Her current behavioral problem is continuous crying so she is also on some anti-depressants (Zyprexa and Paxil) and an anti-anxiety (klonopin) and Valporate (to slow down brain activity)

There has been significant discussion about meds and Alzheimer's disease lately and their use stimulates controversy. I will explain my thoughts.

"There is no cure for AD so why would anybody want to give any meds"
True, there is no cure for AD so what do the medications even do? First they have been shown to SLOW DOWN the progression. AD has just one ending, but how quickly should you get there? My wife is 62 I have to assume her life expectancy is similar to someone without AD. I have to assume that she will not die from natural causes for another 20 years. At present (with reminders) she can still toilet herself and dress herself (when clothing is handed to her) and she can still feed herself. I want these skills to continue for as long as possible! It means the difference of whether she can stay at home or I have to begin paying for an expensive care facility. If she were 90 years old I might not use any meds and I would hope she passes quickly.

"None of the medications do anybody any good"
Wrong! They may not 'cure' (nothing will do that) but they do alter behavior! Behavioral control is the ONLY treatment for AD. If they are calm and cooperative they can stay at home for a longer time. If they are violent, needy, wont sleep or are otherwise uncontrollable then they have to be sent to a professional care center. Because of her needy, crying behavior my wife has been kicked out of 3 different day care programs at $500 a month. I currently pay $2000 a month for home care so that I can go to work (I am 54) If her behaviors becomes worse I will be paying between $3000 and $6000 a month for residential care. So YES the medications are doing some good. Every dementia person is different, if she were calm and quiet and cooperative without the meds and I saw no change then I would think the meds were worthless too. There have been some times when she did not have her meds. (we ran out or I forgot) and I could tell a difference in her behaviors. Others who are not as familiar with her would likely not see any difference with/without the meds but I can.

The clinical trials done with the AD meds commonly show few changes when used over a long time and the conclusion is that they 'work' for only a short time and should be discontinued. The problems with this are the scales and evaluation tools they are using to determine whether the meds are doing any good. I would hope that readers of this message board know that the MMSE is NOT a reliable scale to detect changes in an AD patient (it was never intended to be used on AD persons) but was the scale that was commonly used to evaluate effectiveness of the medications during the trials (a guaranteed failure). I have yet to see a study that included quality feedback from daily caregivers who are noticing the very subtle changes (both good and bad). Only when these VERY SUBTLE behavioral changes are noted will the effectiveness of AD drugs be truly evaluated.
The age groups they are being used on is important too. My 62 y/o wife is very different from a 95 y/o dementia person.

"Medications are just and added expense"
Well, if you dont have health insurance and the choice is to either buy the meds or eat, then they are an expensive choice. If however they are affordable to you, then the decision to stop should be made on behavioral changes (as noted above)
There are generics available now for many drugs (such as Aricept) so the costs have dropped.

"Medications are abused and over used in care facilities"
We all know how difficult it is to care for just one AD person, how many staff members does it take to care for a ward full of them?? In order for a care facility to be affordable the owners will operate it with the minimum number of staff they can get away with. IF patients are over-medicated then their care demands are even less. So, yes there is a big temptation to over medicate but that is not a problem with the meds, it is a problem with the system.

Then comes the concept of 'chemical restraints'. Intentionally medicating someone into very submissive behaviors. Sometimes the rage and violence associated with AD means that the use of chemical restraints IS a necessary care plan. BUT the potential for abuse is real and frequent re-evaluations are necessary to see if this is really necessary.

"I am not going to use any drugs, I will just use 'natural' things like coconut oil"
Uhhh excuse me . . . all drugs are "natural" (many come from plants or living organisms) and any 'natural substance' used to achieve a biological change as a desired effect makes it a drug!
Coconut oil in a Pina Colada might be a food, but Coconut oil given to effective a change in an AD person makes it a drug.

Natural substances? Pharmaceuticals? Certainly the choice is yours, but only one has been studied and shown to be effective. The effectiveness of the other is based on stories and rumor. . . . .

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thank you for your honesty

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m-mman makes many good points. I especially agree with the concept that there is no hard line between food, medicine and anything else you can use to affect your body or your mind, or that of the person you are caring for.
Know what the effects (good and bad) are for anything you are considering, and use it wisely. Watch for other effects (again, good and bad) and evaluate if that product is acceptable to you.

I think the fields of nutrition, nutraceuticals (spelling?) and the various alternative medicines are constantly evolving. Since many of the products are not controlled by a single company, there is probably less testing or no testing to see if a particular material works for a certain problem. There is no money in it for whoever does the testing.
So we end up with stories about how 'such and such a diet worked for my uncle' sorts of things.
Results are easy to see if they happen immediately, or every time the person eats that food/medicine. But harder to tell over a period of months or years.
Not saying that any specific product or system is good or bad, but suggesting that if you try something, you may or may not know if it really is working.

Obvious benefits as outlined by m-mman are usually easy to figure out, but what about the more subtle ideas?

Here is a specific instance:
My Father's doctor explained the role that sugar and simple carbs play in Vascular Dementia, and told my Father: "No alcohol" and briefly discussed diet with us, emphasizing a reduction in simple carbs, and an overall balanced diet of vegies, meats and complex carbs, and take certain vitamins, but without any specific foods to emphasize or avoid (except sugars).
How can we tell if such a diet is really causing less damage to the already damaged tissues? Not advancing the problems?
All I know is that it seems reasonable to follow such a plan as a general guide. We see an overall deterioration happening, not any day to day problems such as would be very obvious with a missed dose of certain medicines.
On the other hand, skimp on his fiber, and he gets constipated quite easily. That is an obvious problem that shows up over just a few days, and is corrected pretty fast, too.
This last part relates to the original post: Used to be that my Father seemed to drink water reasonably well, preferring to order water instead of soda when we ate out. Recently he does not want water. I will get it for him, and he will not drink it. He is not actually saying he 'hates' it, but does not want it, complains that it is bland. To get enough fluids we need to flavor them, somehow. Watering down juices, serving wet foods like soup and similar things.

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All very true Mr. Mac,

The effects/affects of everything must be considered. You mentioned the constipation thing; couple this with all the talk about the uselessness of Aricept. Aricept is a Parasympathic stimulator. This means that it STIMULATES the bowel and INCREASES secretions.
The side effect listed is 'diarrhea'. Another word for diarrhea is soft or loose stools. . . .
Is your AD person straining? Have they forgotten how to 'push'? Well, Aricept increases motility and lubrication . . . .

I am NOT suggesting that Aricept be used as a laxative, but hey, maybe you are using Aricept for the dementia and maybe it aint doing much for the mind, but it might be giving you benefits at the other end. ;-)

I heard of a case where a caregiver was using Aricept and to prevent diarrhea she was also giving Imodium daily. She decided to stop the Aricept BUT she kept giving the Imodium (because she forgot WHY she had been giving it in the first place) and her husband became plugged up and impacted. (took a few days to clear him out) She then stopped the Imodium also.

It all reinforces that in this disease where there is no cure, the effects and side effects are the only benefit. But to use them effectively to our advantage, WE must understand the medications, (what they do and how they work) and then maintain a constant vigilance for changes in our loved ones, then report the observed changes to the doctor and make modifications accordingly.

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I so agree with you. My mom in a Assistive living facility. Over medicated her, she wound up in ICU on a life support for three days, overmedicated so much it slowed her breathing down. And reduced her oxygen exchange 70% You have to be around 90% or above to live.

People don't realize, ITS the big PHARMA lets give u a drug. Every behavior has a label. Another drug to address it. What the heck people?

YOU got gas , well JUST FART.

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