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Mom has dementia  This thread currently has 3,464 views. Print Print Thread
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SandrAruba
Friday, May 18, 2012, 9:05pm Report to Moderator Report to Moderator

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What type of dementia, we don't know yet, but probably not Alzheimer. Her short term memory is completely gone. She came to visit in December and still hasn't left, yet she has no idea she is here for almost 6 months now. It looks like a form of dementia limited to the frontal part of her brain. They are suspecting she had some sort of stroke (very light) possibly due to her high bloodpressure, but I doubt we will ever find out what caused it.

My question, I just ran my Swami with and without "dementia in family" and there are some differences in food ratings, like Ostrich meat going from beneficial to neutral and yoghurt no longer being a diamond food. Since she is the first and the only one in my family to ever have this and seeing how we have no way of knowing what caused it, do I mark it in my family history or not?






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C_Sharp
Friday, May 18, 2012, 9:55pm Report to Moderator Report to Moderator

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I would.


Because if there was only one thing I could prevent with diet, I would probably choose dementia.

For me this is extremely important.




In general in SWAMI you want to avoid checking every possible condition for treatment, because the selection start canceling each other out.

If there are other conditions that are more strongly in your family you may choose to include these instead, but I consider mother to a pretty direct relation to you. I am not looking at literature at moment, but as I recall studies show a fairly strong link of dementia between parents and child.


MIfHI                            I follow a SWAMI diet.
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Goldie
Friday, May 18, 2012, 10:09pm Report to Moderator Report to Moderator

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yes I might include strokes and whatever, but moving a food from one to a neighboring list is not a total wipe out in my book.. but maybe make yogurt a less often food..  

and get the Trehalose Complex and see what it might do for you and mom..

for you for energy.. a spoon full in AM and before night work..

for mom 1/4 8 times a day.. unless she sleeps to much then I would do 1/2  4x times .. test as you go..  

Sandra I feel for you.. you where so looking forward to going home.. but mom needed to be with you and you are there.. nice! all the best..


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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Goldie
Friday, May 18, 2012, 10:12pm Report to Moderator Report to Moderator

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another thing.. if mom is aware enough to THINK of what might have shoked her emotionally, maybe she could heal some.. if you want to discuss that more, pm your phone number.. I will call you.


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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Lin
Saturday, May 19, 2012, 12:10am Report to Moderator Report to Moderator

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SandraArub,
You have my sympathy, very tough to see this with the parents. My father has vascular dementia but it came on very slowly.  What you describe sounds very abrupt.

C-Sharp,
Could you clarify, on your comment " In general in SWAMI you want to avoid checking every possible condition for treatment, because the selection start canceling each other out.:.
Are you referring to where you check your own history or do you also include in that statement, the illness of grandparents?

thanks Lin


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C_Sharp
Saturday, May 19, 2012, 12:54am Report to Moderator Report to Moderator

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I am referring to both.

In general it is simplest and best to be honest and provide the answers SWAMI asks for.



But in some cases people seem to tick off they have a history of every ailment listed.

Not only they had every ailment, but some family also had every ailment.

They also think at some point every lab test was high


This causes SWAMI to try to address everything at once.  It cannot effectively treat everything at once.

In those situations it is best just to check the conditions you want SWAMI to customize a diet for.  It can than focus on those specific conditions.


MIfHI                            I follow a SWAMI diet.
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Spring
Saturday, May 19, 2012, 2:13am Report to Moderator Report to Moderator

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Quoted from C_Sharp
I would.
Because if there was only one thing I could prevent with diet, I would probably choose dementia.
For me this is extremely important.


I certainly agree with that. I don't know anything that drains a family any more than a parent with dementia. I have seen too many families decimated by it - physically and mentally.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Lola
Saturday, May 19, 2012, 5:32am Report to Moderator Report to Moderator

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have you tried having her listen to music?

tunes from her past....whatever makes her smile and vibrate positively

http://www.youtube.com/watch?v=NKDXuCE7LeQ


''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
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Spring
Saturday, May 19, 2012, 12:03pm Report to Moderator Report to Moderator

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I have seen people with dementia respond very well to high amounts of the B-vitamins.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Lin
Saturday, May 19, 2012, 12:52pm Report to Moderator Report to Moderator

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C-Sharp, thanks that is helpful as there is a lot of different things in my family and I may have checked off rather a lot myself.

SandraAruba, What Lola says about music is so true.  My Dad used to play the keyboard and I find when I am talking to him (usually on the phone as he is in the UK and I am in the US) if he is confused I can talk about songs he likes, and sing a bar and it helps him enormously and his mood will lift with it.  In the UK they are doing studies on using music therapy (listening and singing) on patients with a variety of issues and have been having successful results in terms of health improvement and mood improvement.  
As Spring says, the B vitamins are very important, especially B12 which is harder to absorb as we age.  
Lin
Lin


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Seraffa
Sunday, May 20, 2012, 3:31am Report to Moderator Report to Moderator

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Quoted from Lin
C-Sharp, thanks that is helpful as there is a lot of different things in my family and I may have checked off rather a lot myself.

SandraAruba, What Lola says about music is so true.  My Dad used to play the keyboard and I find when I am talking to him (usually on the phone as he is in the UK and I am in the US) if he is confused I can talk about songs he likes, and sing a bar and it helps him enormously and his mood will lift with it.  In the UK they are doing studies on using music therapy (listening and singing) on patients with a variety of issues and have been having successful results in terms of health improvement and mood improvement.  
As Spring says, the B vitamins are very important, especially B12 which is harder to absorb as we age.  
Lin
Lin



I agree; although, my mom will not play any music in the house now.


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jeanb
Sunday, May 20, 2012, 12:05pm Report to Moderator Report to Moderator

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My mother is in one of the late stages of Alzheimer's, if I knew then what I know now, I would do the following;

1.  Get a baseline cognitive Alzheimer's test earlier rather than later.  My mother's IQ was extremely high, so even when we knew she was in the initial stages of Alzheimer's she tested really well and couldn't get on Aracept, a med that can keep one stable longer. My FIL got on Aracept earlier and didn't progress through the disease as fast as my mother.

2. Catastrophic reactions happen without warning and are complex and are not a reflection of care and rational thinking.  

3. Homes are used to families who do not want to face the reality of the disease so they tend to sugar coat the progression.  We don't want sugar coating and the home has difficulties in not being "nice."  They were relieved when we told them we understand their difficulties, but it was really important to keep us informed, no matter how painful.

4.  Drugs don't work.  When parts of the brain are being lost, many drugs are contraindicated and may do the exact opposite of what is expected.

5.  Pain management is really important.

6.  When the patient starts to lose interest in food, have them eat strongly flavored foods, my mother is only willing to eat chocolate, pickles and chips.  She says everything else tastes bad.

7.  This disease is "atypical" no matter what.  No one follows the same progression.

8.  Check your loved ones' body at least every  week.  They will tell you they know how to take care of themselves, but they can't.  Check for sores, toenails that need care.  Often they will obsessively pick at sores until they get infected.

9.  They do not get better, all you can do is keep them safe, in my mother's case, as she is violent now, keep others safe from her.
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Lin
Sunday, May 20, 2012, 2:21pm Report to Moderator Report to Moderator

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JeanB,  great advice.  


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SandrAruba
Sunday, May 20, 2012, 4:33pm Report to Moderator Report to Moderator

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Quoted from jeanb
My mother is in one of the late stages of Alzheimer's, if I knew then what I know now, I would do the following;

1.  Get a baseline cognitive Alzheimer's test earlier rather than later.  My mother's IQ was extremely high, so even when we knew she was in the initial stages of Alzheimer's she tested really well and couldn't get on Aracept, a med that can keep one stable longer. My FIL got on Aracept earlier and didn't progress through the disease as fast as my mother.

2. Catastrophic reactions happen without warning and are complex and are not a reflection of care and rational thinking.  

3. Homes are used to families who do not want to face the reality of the disease so they tend to sugar coat the progression.  We don't want sugar coating and the home has difficulties in not being "nice."  They were relieved when we told them we understand their difficulties, but it was really important to keep us informed, no matter how painful.

4.  Drugs don't work.  When parts of the brain are being lost, many drugs are contraindicated and may do the exact opposite of what is expected.

5.  Pain management is really important.

6.  When the patient starts to lose interest in food, have them eat strongly flavored foods, my mother is only willing to eat chocolate, pickles and chips.  She says everything else tastes bad.

7.  This disease is "atypical" no matter what.  No one follows the same progression.

8.  Check your loved ones' body at least every  week.  They will tell you they know how to take care of themselves, but they can't.  Check for sores, toenails that need care.  Often they will obsessively pick at sores until they get infected.

9.  They do not get better, all you can do is keep them safe, in my mother's case, as she is violent now, keep others safe from her.


Thanks all, for the input. The reason I am asking if I should check is that I get the impression that her dementia is caused by an outside factor rather then her lifestyle. I don't know if she bumped her head really hard at some point. Last year she was here with me on vacation, but while she was forgetful it wasn't very alarming. But ever since I went back to Aruba (May last year) it has been getting worse. We did go to a specialist here because her blood sugar (she is type 2 diabetic) was too high and he concluded that her blood sugar did not cause the dementia, but the dementia caused the high blood sugar because she was forgetting to take her pills. He also mentioned that perhaps she had some small stroke due to high blood pressure but her blood pressure is 160/80 which is not abnormal for someone in her 70ties. So we ruled out that possible cause, which remains us guessing to the cause.

Jean, your points are great. I find that people will easily tell you want not to do rather then tell what you should do. So your points are great.
1. I had her take a neurological test and it seems only her cognitive function (memory) is affected. With Alzheimer everything else is also affected, so the conclusion of the test was that it's another type of dementia and not Alzheimer. Problem with my mother is that she is convinced there is nothing wrong with her.
4. I am also having my doubts about drugs for her don't see how it can heal the part of her brain that is damaged.
5. She's not in pain but I am paying close attention to any ailments she may have/get.
6. Mom is never hungry, but whatever we give her she finishes it off completely. And we make sure she gets three good healthy meals per day. She's a hungerwinter survivor and will never leave any food on her plate.
9. Yes, trying to keep her safe, just because she has no idea what is going on with her.

Spring, I have her on B12 for over 4 months now. She was very depressed when she got here so I started her on that quite soon after she got here.




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Goldie
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I feel for all you out there fighting so much .. Angels that are there on stand by and do the best you can.. what more would anyone want..

Has anyone tried TC yet? and maybe really tracked it?


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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SandrAruba
Sunday, May 20, 2012, 11:16pm Report to Moderator Report to Moderator

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Quoted from Goldie
I feel for all you out there fighting so much .. Angels that are there on stand by and do the best you can.. what more would anyone want..

Has anyone tried TC yet? and maybe really tracked it?


Goldie, I would love to get the TC, but the shipping costs are way too expensive for me to be able to order anything from the NAP site.





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jeanb
Monday, May 21, 2012, 11:49am Report to Moderator Report to Moderator

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Hi Sandra:

My Mom's progression started as vascular dementia (I truly believe however, the medical community is only just starting to sort out these diseases) and has finally presented as full blown Alzheimer's.  My doctor now believes this is a genetic Alzheimer's.

At the beginning she was pleasantly confused with high blood pressure (190/120).  She wasn't taking her meds and she wasn't eating properly.  I would leave simple food in the fridge to prepare and she couldn't do that.  

For the past 5 years, she has progressively become worse on a seasonal basis.  She stays on a plateau, then markedly declines during the change of seasons.  For the initial 4 years, after diagnosis, she stayed pleasantly confused, but the past year has been very difficult, paranoia, violence, total incontinence and not allowing care givers near her.  Last week she took a cane to my sister and then scratched her quite badly while attempting to pull out her hair.  

Her symptoms are clustering up right now...it seems like every advanced symptom of Alzheimer's is crowding in right now, even though the official diagnosis from 5 years ago was vascular dementia.

All I can say at this point, is depending on how the laws are structured, ensure you have a power of attorney, don't feel bad if a home is what she needs for care and structure.
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Lin
Monday, May 21, 2012, 1:03pm Report to Moderator Report to Moderator

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Jeanb,
That sounds really tough. I imagine the vascular dementia and alzheimers might be both possible with my father also.
Such a tough situation.  
Lin


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Goldie
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Quoted Text
Goldie, I would love to get the TC, but the shipping costs are way too expensive for me to be able to order anything from the NAP site.


It was on sale.. might still be .. but if not as DrD's medicine would plain trehalose work???? I have been wondering about that.. Research it on google and see if it might apply .. there 2 pounds are 25.-

BUT still ..  send on email to Dr D's clinic --or to Lola --- she might get on answer -- and ASK if the TC might really do something for mom or not?   I would also ask IF OTHER sups HE has that might be even better.. and WHY?    

and maybe think of getting either for your own health TOO.

Here is what Dr D said.. http://n-equals-one.com/blogs/2011/12/22/1851/  

I just wish there was help  .. for all you care givers..    


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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Jane
Monday, May 21, 2012, 2:35pm Report to Moderator Report to Moderator

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My mother died a year ago this coming Friday - it was finally a fall that did her in.  She was diagnosed with dementia in the late 90s.  They called it Alzheimer's but I was never really sure.  She never exhibited the violence and the only times she was difficult was when she was in the hospital or if someone she didn't know was trying to treat her.  She had some TIAs a few years before she was diagnosed so that was probably a contributing factor.  Every once in a while she had short periods of some clarity but she was almost "manic" during those periods - high energy.  

Short term memory was almost completely gone but she could still read although I didn't know if she was really processing what she read.  Sometimes I think she recognized me but she was smart and would often skirt a conversation to make it seem like she knew who you were.  

I like what Jean said about the necessity of caretakers sharing everything.  My father used to coach her before she went to visit the neurologist on things like "who's the President, President's wife's name, etc."  It was his form of denial.

It's a difficult road and you need to make sure that you get time for yourself.....it's exhausting bothe physically and emotionally.
Jane
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SandrAruba
Monday, May 21, 2012, 4:20pm Report to Moderator Report to Moderator

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Thanks Jean and Jane,

Mom doesn't read anymore. She either forgets which book she was reading, or starts the same one she just finished. She still does her puzzles. That keeps her busy. My husband is starting on taking on our garden (huge!) and he is having her help him. That keeps her busy and she feels useful.

It breaks my heart when she talks about how she has to take on her own garden back home in Holland when she gets back. She really has no idea how bad she is, because in her memory she is taking care of herself. She forgets, she forgets.
When she just got her she did have terrible moodswings and was just plain nasty at times, but ever since she's been on the B12 that has subsided significantly.

I will be sure to get help when it really gets necessary. I know I can't do it all by myself.

Still not sure if I should mark this in my Swami since I already marked diabetic and vascular problems (dad died of a heart attack). Since I am overweight, diabetic is a very possible threath for me. But then again, if it only means yoghurt is no longer a diamond (but still a beneficial), it's not really that big of a change. (still have to check other differences). Granddad died of kidney stones and other granddad had parkinson. How much info do you put into Swami?





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C_Sharp
Monday, May 21, 2012, 4:51pm Report to Moderator Report to Moderator

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Quoted from SandrAruba
  other granddad had parkinson.



I would have checked "Do you have a family history of dementia:" for Parkinson's.


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Kibble
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My mother died of RA and dementia.  I struggled and tried everyway I could think of to help her.  I'm not sure if anything I did actually made her life any better.  In retrospect, to do it all over again, I think I would just chill a lot more and love her, enjoying the moments we could share.  I'm sorry you are having to face this, it's a big one in life's design.

My father's mother had alheimers.  She was in a nursing home and I went with him on one of his visits.  He had a new beard he was very proud of, though we had all told him to please shave it off we didn't care for it lol.  When his mother saw him she gave out a cry of glee, hugged him hard and took off with him to the nurses station where she called everyone around her and said, "Everyone, come here!  I want you to meet my father!"  My dad's face was crestfallen.  The next morning at breakfast my father sat there...beardless.  
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ruthiegirl
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I'm so sorry. I can only imagine what it must be like to see somebody you love decline like that. I'm very thankful that my Dad had heart problems but his mind was there up until the very end.


Ruth, Single Mother to 19yo   O- Leah , 18yo O- Hannah, and  12yo B+ Jack


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jeanb
Monday, May 21, 2012, 11:46pm Report to Moderator Report to Moderator

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Thank you to all for your kind words.

I should have specified that anti psychotics, anti depressants, anti aggression meds seem to be contraindicated for many with Alzheimer's, the anti-psychotics make them more psychotic and aggressive. She is refusing all meds including her pain meds, but her osteo is so advanced, she is literally in pain all over.  She is only getting pain meds when she is willing to take them, otherwise, all meds have been stopped.  

A week ago, my sister and I found my mother soaked in urine on her couch screaming at her care givers.  She became psychotic when she saw my sister, she has lost over 8 lbs in the past month and now weighs about 80.  We were able to lift her into a wheel chair and my sister performed some nursing ninja moves to strip her.  We coaxed her into the shower with the promise she could have a stuffed dog and that I would be calling her mother and letting her know about K's behavior.  

She somehow recognized me, but I look very much like my mom and her sister, and she responded to me.  

My sister, brother and I all wonder whose Karma is that we are working on.  When we left my mother that evening, I shut off the lights and she said everything was looking so beautiful, maybe she was on a beach with a rum and coke and feeling content.

We all work at very full time jobs and have families, I don't sleep at night and have not been eating properly.  At soon to be 52, I have a nasty case of cystic acne on my neck.  My brother looks like he has aged 15 years through this.  My sister is an ICU nurse and always looks she has been ridden hard and put away wet.  

A few weeks ago she decided to stop eating and I received a phone call from the home.  I suggested to my brother to give her some chocolate and coke, which she ate.  I then received a phone call from the nutritionist at the home saying the chocolate and coke were interfering with her nutrition.  I let her know that my mom wasn't eating their nutritious product, so perhaps their food was interfering with her nutrition.  My sister had to put my choke chain on me so I could walk away without losing it.  This is a real study in patience for me.

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