mom scored better this year then last on her mini mental test
Hi I have come on this forum a few times but there doesn't ever seem to be anyone else online. I was trying to get some thoughts on a question and found that I didn't get any answers. Maybe not enough info from me. I take care of my mother who has some sort of dementia. I had 2 friends who had a parent diagnosed with Alzheimer's, but when they passed away, the autopsy on both people they had vascular dementia. Can the doctors tell which dementia a person has is there specific testing to specific dementia. I do realize that some dementia's have peticular signs such as lewy body parkinson's like symptoms, strokes means most likely vascular. Anyway thought that I might track my mother's progress here, and maybe get some answers from people who have been there. Not sure how to do that
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Email Is there a chat room here? I thought that it might be good to come on the forum in between Dr's visits as I always seem to have questions in between. My mom has been diagnosed with lewy body, from her Dr, but then was in the hosp and diagnosed with vascular or frontotemporal they didn't seem to know which. She has also been to a geriactics Dr. who did not say which type just dementia. First signs were almost 10 years ago. For a few years now \i have been trying several different things to make her better, mostly from health food stores and talking to them. A friend of mine did talk to her holistic healer. I do have her taking all vitamins to help with health and doing fine C, D, B12, omega 3, calcium, she is not on a medication for dementia anymore, as I never did see that it made a difference. Do people just write something one day and check back in a few days to see if there is a reply. Thanks
Hi Arlie,
Forums work in a way similar to the old bulletin board style -- that is, people post and then others also post with answers. It's not a chat room, which is different, with people who are online at the same time in the same place being able to interact simultaneously.
With regard to diagnosing different kinds of dementia, doctors are not always able to do diagnosis the specific types, although most of the times they can, either with an MRI or PET scan. Sometimes they can't, however -- in Alzheimer's, for example, it's a diagnosis of exclusion, and a definitive answer can only come after a loved one has passed away, and with an autopsy, which not everyone agrees to.
Naturopathic medicine has come a long way towards helping people with dementia, but it is not as effective as allopathic intervention. It is usually best if you can find a practitioner who is able to integrate the two together -- and there are many these days who are able to do so. Try to find a naturopath who is also an MD. They do exist. There is a national Naturopathic association -- I am not sure about its name but will try to find it -- and they may be able to help you. The reason is that sometimes nutritional supplements can actually work AGAINST medical interventions, rendering them useless, or worse.
One has to be very careful when tinkering with the human body, Arlie.
Keep writing and let us know what's happening. We want to help you.
All the best,
Ann
I took my mom for her annual mini mental test today. Her scores were 20 and 23 this year. Last year the score was 19 and 21. A couple of months ago I did have a health nurse do one of their tests which is I guess is an upgraded mini mental, and the score was 21 for behaviour which was up from 17 in 2011. Her behaviour, and awareness of people and surroudings is better. But I do have a copy of one of the tests she did and it states on there that the expected rate of decline is 4 points per year, so how do I know how much better she is doing when her memory is about the same and everything else gets better. The reason I ask is that my sister wants me to put her in a home and now we are not sure what care she needs, or should we just go with assisted living, as she still could not cook for herself. Anyway with the scores is it a big deal when they score better? I think it is. Has anybody else had this happen?
1/30/2012 Hi Arlie,
Guess this may be good news for your Mother. But, what is the exact name of the test that was given to your Mother today and the previous tests? There are different tests that can be given. What is the overall purpose of this particular test --- what exactly are they trying to determine by the test and the results?
Exactly what type of dementia is the test designed for? Has a definite diagnosis of the type of dementia your Mother has ever been made? How did they determine which test to give your Mother?
Personally, I would not use test scores to determine whether or not to place your Mother into a home. Neither would I use a test score to determine what type of home to place her. Based on the type of dementia involved, there are too many factors to be considered before making certain decisions.
My Mom was moved to an Alzheimer's Assisted Living home end of 2007. Just recently we moved her to a private residence care home. Neither my husband or I or any of Mom's doctors used test scores to determine where to place her.
In 2007 two geriatric psychiatrists took a week of talking with Mom, interacting with her, and giving her various tests before determining she was in moderate-severe Alzheimer's. They then determined that she need 24 hours 7 days a week care by someone. These doctors did not use just one item or test to determine what was best for Mom's care.
Maybe you and your sister need to talk with your Mother's doctor to find out more about the type of dementia she has and what is the proper care she needs. Knowing the type of dementia and where she is in the process of the disease is very important in helping decide treatment options and what type of care she needs (assisted living, memory care unit, etc) and where best to receive this care.
I have never relied on test scores to determine what care my Mom needs. Working with her doctors and learning as much as I can about Alzheimer's has been helping me in providing the proper care for Mom.
Looking forward to hearing more from you.
Nancy
1/31/12 Hi Arlie
Well, I did some research and think I know the test that was given to your Mother yesterday. Was that the "Folstein Test" or MMSE (mini-mental state examination? I am not a trained medical professional so I am still learning new things.
Besides checking your Mother's cognitive changes, are there any other things they are looking at?
You mention that one of the tests she did has a note about an expected 4 points decline per year. Maybe the people who give this MMSE test to your Mother can explain where this 4 points decline comes from and how it is arrived at. Or, maybe this statement is based on test results given to people over time. One person's test results can be different from another person's.
I have heard this saying: When you see one person with Alzheimer's you have seen one person with Alzheimer's. Everyone goes through the process in their own way and time.
Besides the test scores, how is your Mother's overall functioning levels? What changes have you seen there? Is her memory better or worse in the last year? What tasks, if any, are easier or harder for her to perform? Example: can she no longer cook for herself? Has she developed problems communicating with you, your sister, or others?
For me how well my Mom can or cannot preform everyday normal functions is very important. If we were still doing the MMSE with Mom, we would probably find a correlation between test results and reduced function capabilities. We stopped giving Mom the MMSE or any other tests 4 years ago when there was no question she had Alzheimer's and she was in the moderate-severe stages.
Deciding when (or if) to move someone into a special care home facility, depends on many factors. How well and safely can the individual still care for themselves? Can a family member take them into their home? Can the family hire someone to come into the person's home to provide care? These are only a few things.
My husband and I decided to move Mom into a dementia facility because (1) she could no longer safely care for herself at home, (2) she would not allow us to have someone come into her house, (3) she would not allow us to help her, and (4) we had no room at our house for Mom. The path we chose for my Mom has worked great for her and for us.
Take your time in checking everything and in making any final decisions concerning your Mother's care. Talk with her doctor about what help she needs, how she is progressing in the dementia disease, and what the doctor sees for care your Mother may need now and in the future.
Wish you and your sister the best.
Nancy
Hi Nancy
I believe the test is the MMSE, it seems to be the test that the Health Nurses used to do. 5 yrs ago my mom went through testing in the hosp. they did tests for her memory, her functioning, and cognitive. I am suspecting that she has lewy body as her first Dr. said as she used to have tremors although the tremors went away a month or so ago. My mom was in the hosp. due to a stroke and since then has had 2 more mini strokes. Now the health nurses say she probably has vascular or frontotemporal. But as I understand it the symptoms are pretty much the same for people with dementia, although each person to their own and each dementia having something specific such as lewy body and tremors. We don't want to base our descision on the MMSE but if she is starting to be better as far as the symptoms what do we expect in a couple of yrs when she does get placed, and how do we say now where she might need to be if she is getting better. My moms functioning is better than it was last year. She will have a shower on her own, she picks out her own clothing and dresses herself, she combs her hair, she dusts her TV area and makes her bed everyday. She has just recently done some laundry for me and she has started reading again a few months ago. 4 years ago we were going to put her in a home and the nurses said she would need to be in a home that has Alzheimer's care. At that time she did, but now the nurses say that assisted living would be good for her. Right now she could not cook her own meals. In the last few years I have asked to have the tests done, so is it that they stop doing the tests when they get to moderate - severe. I guess so because the person is not expected to do better than the year before, and why put a person through the tests when it only show further decline. I'm sorry I think I just answered my own question, or was typing out loud.
1/31/2012 Hi Arlie,
1. Why do you suspect Lewy Body Dementia? Just because of the tremors? You need more than that to arrive at a LBD diagnosis. My best friend's father died with LBD. I watched for 6 years how that disease destroyed him and caused one problem after another for the family. It took his family doctor (who knew Mr. J. for over 25 years) 2 years before making the switch from Alzheimer's to Lewy Body.
I don't know how much your know about LBD. The following is their website: www.lbda.org For additional info, click on the following:
2. I am confused. You mention about Health Nurses and their suggestions on such things as where to move your Mother to for care, doing the MMSE testing, etc. Is there a doctor involved with your Mother's treatment and care?
3. A diagnosis needs to be made by a reputable medical source as to the type of dementia your Mother has. It is in her best interest especially to help determine what care she may need for the future. You mention Alzheimer's, then LBD, then Vascular Dementia, and then FTD. Yes, there are some similar symptoms but there are enough differences.
4. My father-in-law died from congestive heart failure and Vascular Dementia. His disease progression was very different from my Mom's Alzheimer's. He even knew us until he died. Mom has not known me as daughter for about 2 years now. And, each of them required certain different medications based on the type of dementia.
5. Has a doctor done a complete physical and blood lab workup recently just to eliminate any other health issues for your Mother? Sometimes other things may initially look like a dementia of some type.
6. As far as when your Mother may need placing and the type of facility, that depends on several factors. From what you say, she may be getting better. Of course, that could be temporary or not. This is one of those situations where a diagnosis would be helpful.
7. I have been able to help my Mom in her "Alzheimer's World" partly because she had a good diagnosis and I have concentrated on learning all I can about the disease. Warren and I have worked closely with her doctors over the last 8 years. Because we know what type of dementia Mom has, we more easily recognize certain changes and make sure the doctor is adjusting her treatment to meet the changes the disease has caused.
I apologize for the lengthy posting. Guess I get carried away at times. Look forward to hearing how things are going.
Nancy (NancyA)
Thanks for you reply Nancy
My mom had a Dr. for about 10 yrs and last year had just changed her Dr. to mine, but more because her Dr. was too far away. It is her old Dr. that diagnosed her with lewy body dementia. Her symptoms at the time were tremors, wandering in the middle of the night, delusions, seeing and talking to people that were not there, aggression, agitation, paranoia, short term memory loss, sun downing and confusion. This diagnoses was made in early 2006. In 2007 she went into the hosp. due to a stroke and was there for 2 months and the team of Dr's. etc. said it was vascular dementia. In 2008 she went to a geriatrics Dr. and they did not say what dementia it was. In 2009 a geriatrics nurse went to see my mom and said it was probably FTD. So I guess this is why I am confused. In the research that I have done on all of these dementia's I can see where they would all fit. But since taking the advise of the holistic healer all of these symptoms go are gone 80% of the time except the memory loss. Her first Dr. did every test blood, thyroid, vitamin levels organ functioning etc, and just recently she has had it all done again. In the recent testing the Dr. said that my mom was in better condition than most people her age.
2/01/2012 Hi Arlie,
Wow! Think I can understand why you are confused about what dementia your Mother has. Sometimes it is a process of elimination in trying to arrive at a diagnosis.
Looking at how many different people have been providing a dementia diagnosis since 2006, I think you may want to consider finding a specialist who has experiences with different dementia. A geriatric doctor may have much better knowledge and experience to provide a diagnosis.
I personally would not go with the word of a nurse, geriatric or otherwise. And, I would not rely on my Doctor of Internal Medicine to provide a dementia diagnosis. Even she would send me on to someone with more expertise.
My best friend's father (Lewy Body Dementia) had a bad shuffling gait, was always seeing people on the roofs of neighbors homes, see people on his bedroom ceiling, and thought people were breaking into the house to kidnap his daughter. The daughter had to call the police twice to check the house. But, he never had sun downing problems. I think sun downing is more common with Alzheimer's.
Since 2006, my Mom has moved through spells of paranoia, confusion, hallucinations, sun downing, agitation, and aggression. She has 98% loss of short and long-term memory. Mom can no longer communicate effectively or carry on conversations.
My father-in-law died with Vascular Dementia. Except for a few hallucinations toward the end, he never had the other problems my Mom has had with her Alzheimer's. He knew us up until the end and he could carry on a regular conversation with us. He could dress and undress himself.
I am not much in favor of using a holistic healer when it comes to treating someone with Alzheimer's, LBD, Vascular Dementia, or any type of dementia. It may work in the early stages, but I have seen too many people in the moderate to late stages to want to trust a holistic healer.
I am glad your Mother is doing better. Please keep in touch.
NancyA (Nancy)
So maybe it is LBD she used to see people out side that were not there, one was a girl on the neighbors roof. She phoned the police on me one time and told them I was keeping her hostage. She used to shuffle when she walked but that went away just after the tremors. The holistic healer suggested that I give my mom coconut oil, but after a few months I did not see any difference in her behaviour. After that I found a coconut oil blend that has MCT's mixed in and that is when I started seeing the difference, and now has done the MMSE and scored better. I have a friend who has been seeing the healer for about 15 yrs. but always informs her Dr. of what she is doing. I did the same and let my moms Dr. know. This is why I was concerned about a ketogenic diet. I am having trouble understanding the research I have read about it, no matter how many times I go over it. But moms last tests sort of eased my fears. Her memory loss is short term and that does not seem to be getting any better, but it was all the other symptoms that I found so difficult.
2/02/2012 Hi Arlie,
1. Your latest post raises one big concern for me. Maybe I am too conservative but 10 years of dealing with my Mom in her Alzheimer's World has taught me that skilled, trained professionals are the ones to go to for a diagnosis of a type of dementia.
Do Not go by what I have said about Mr. J's Lewy Body Dementia symptoms. Do Not go by things you read about various dementia. There are many types of dementia and sometimes certain ones can coexist. They are all complex. They tend to affect each person slightly differently.
Your Mother needs a diagnosis of what type of dementia she has. It should come from someone who is trained and experienced in dementia.
2. The coconut oil therapy will never help my Mom at her stage. And, I am not completely sold on it yet. True, it may help some people and improve their dementia symptoms. BUT for how long? And, from what I have read, it is not a cure for any dementia. If it is not a cure, than it is only helping reduce certain symptoms and helping a person gain back some of the things they have lost. Again, for how long? And, what problems can it cause if someone is not careful in monitoring use of coconut oil and MCT or the coconut blend?
3. Arlie it is not easy watching what is happening to your Mother. It was hard for me to accept my Mom's Alzheimer's diagnosis. It has been even harder watching the changes the disease is creating in Mom. She has lost all her dignity. She has become a stranger to me in so many ways.
But, I have to make sure I am making the correct decisions for her daily care (and her future care) based on the right reasons.
4. As my Mom's Alzheimer's has progressed, she has had short periods of time where the progression stopped. A few times there "seemed" to be improvements. But, eventually the disease continued on its way in destroying her brain functions.
I hope you find the right answers for your Mother's dementia needs. She needs you more than ever to help her decide what is best. Just be sure you are using good, sound information from good, reliable sources in making those decisions.
NancyA (Nancy)
Thank you for that Nancy, part of the reason that I come on here now is to get closer to some of those answers. I do hope that my moms symptoms do not come back, but I am wondering if there are other people out there using this oil and for a longer period than I have. I think that I will get her back into a geriatrics Dr. as I know more of what to ask than I did when she went to see one in 2009. I think that I was in shock for a few yrs when the Dr's were trying to figure out what dementia she had. I do remember one thing that a Dr. told me was " this is the best it's going to get. At that time I thought no way I cannot do this, and now I can't help being happy for trying the oil. I don't believe everything I read on the internet which is also why I'm here. I do believe word of mouth from someone who has been there. I did look into a lot of patent research though and did find info of research regarding the coconut oil blend. I also figure that the gov. does not want a cure to come out as what would a cure do to the pharmaceutical company's. I am and never was one for medications more into the health food thing, as there are not the side effects. My mom used to be on 8 medications and as of now she is on 4. She was taking exelon which I did not see anything right from the start, so she is off that one now. With the coconut oil blend it seems to have stopped the symptoms in it's tracks. I was reading a post on here about coconut oil (as I will continue to research it as long as I am giving it to my mom) and one person was saying that it takes 90 min. to start working and wears off in 4 hrs and the you give them more and that is exactly how it is working for my mom. Her last oil is at supper about 6:30pm and she is OK going to bed and sleeps through the night, but in the mornings wakes up a little delusional saying things like how did you get in my house etc. I give her the oil and she is good again until lunch. So the oil is not a cure I realize that but it is the same as giving her a med. 4 times a day and it is working. It really is great to have someone's opinions on this and I have always been open to suggestions. I understand a lot of dementia, but I also don't understand a lot of it. I just like having my mom better than she was. I guess I want the best of both worlds now that I finally have it, because my moms dementia brought my world at one point and for too many years crashing down. I have to say I am enjoying the extra freedom.
2/03/2012 Hi Again Arlie,
1. I do not think the FDA or any other arm of the U.S. government is in a conspiracy with the with the drug manufacturers. Part of the problem now is that getting U.S. gov't money for dementia cure has been sitting on the back burner until just last year. I am so tired of hearing from certain people that the FDA is suppressing coconut oil or any other thing just for the financial gain of another group. There, that is my soap box for today--maybe.
2. Based on what is out there today for treating various dementia, a type of dementia will eventually get worse. There is nothing out there today that cannot stop a dementia from destroying parts of the brain functions. Nor is there anything out there to stop AND repair damage done. Research is looking into some things that may work, but nothing definite yet. Even you say that using the coconut blend has helped your Mother improve but has not cured her. Only time will tell.
3. I believe in the importance of good nutritious eating habits. I am not into health food store products because: (1) too many have been proven not to really work and (2) I do not believe in using health food products to treat Alzheimer's or any other dementia. Plus, I have personally seen the harm that can be caused if the person is not properly using health foods.
4. If the coconut blend is helping your Mother for now, then good. You seem to be someone who will work with her doctor to make sure the blend does not cause her harm.
5. I hope you are able to take your Mother back to a geriatric doctor. And, I agree that because you are armed with more information, you may get better results next time. I firmly believe in keeping up-to-date on what is going on with Alzheimer's research, etc. so that I can better work with Mom's doctor.
6. Yes Arlie, we all want the best of both worlds when it comes to our loved ones. For now enjoy the good times with your Mother. I am glad you can continue to make happy memories with her. But, just remember that dementia will eventually surface again and cause more changes. For your Mother there is still hope that a cure will be found in time to save her. For my Mom that is no longer possible.
7. My first husband died at age 36 needing a heart transplant. He taught me many things during his last 8 years of life. Take life one day at a time. Enjoy the time you have with your loved one while you can. Cherish them and the memories you make for as long as possible.
But, at some time I had to learn to let go of Charles. I am learning to let go of my Mom. She must move on to another world while I stay behind. My goal is to be there for her the best I can and to give her the best possible life she can have for whatever time remains.
Good luck Arlie. I wish you and your Mother the best. Never stop questioning and never stop looking for the answers to your questions.
Nancy
I guess a lot of how I feel stems from not being a person to take medications and seeing the side effects of the meds. my mom used to take. I guess it is like her cholesterol med, if I can keep her chol. down through healthy foods and remedies I do not want her back on the med. Although I do keep her Dr. well informed as I know they can be dangerous. But sometimes I wonder how up on health foods the medical Dr's are, and that is why I do my own research. I do agree about the junk out there, and hype about something that does not work, and I have tried many of them just to be sure. I have always thought that everything I have tried was worth the try, and as they did not work on to the next. Just as the exelon, we tried for 4 yrs. I always keep in mind where I'm getting the information and each time I have also consulted with the pharmacy, as with the coconut oil blend. I don't know if the gov will find a cure in time for my mom, she was in the hosp. recently due to unrelated issues to dementia and when I told the Dr. there that she has had dementia since about 2002, he right away said Oh she must be bed ridden then.
Do the geriatric Dr. continue to see people annually. Since my mom went she has not been called back for anymore appt. Do they continue to track the decline.
I'm sorry to say Nancy I really hope your wrong about this disease back strong again, I really do like it the way it is. I guess the relief for however long is great. But I know it is still there, it's just not as ugly as it was. Just this morning she had said while getting dressed and before her oil that the army told her not to wear anything fancy. So it is there in the mornings and at night depending on how late she is up. I can deal with that and having the symptoms gone throughout the rest of the day makes everything so much easier. I am trying to hang in there for my dad ( he passed away in 2005) but asked me to take care of mom. Of course I said that I would not knowing and as he did not know that my mom had dementia. Did you take care of your mom before she went to the home?
Thank you for all your replies I think I get rambling all of the time when it comes to my mom and this disease.
2/03/2012 Hi Arlie,
1. The different types of dementia work in different ways. The disease progression can also vary from person to person. As far as I know --- as of today there is (1) no known cure for such dementia as Alzheimer's, Lewy Body, Vascular, and others and (2) there is no known medication that can permanently stop the disease progression. The dementia may slow down or even seem to stop for a certain period of time. But, eventually it will continue down it path of disease progression --- that is until a cure is found.
2. I understand (somewhat) your not wanting to take prescription drugs. Wish I did not have to take any but I must because of moderate asthma, severe allergies, and blood pressure problems.
I wish my Mom did not have to take the medications she does. But, the only way to help Mom remain calm and peaceful most of the time, she requires certain medications. Health food products will not do it for her.
3. Again, to help you and to help your Mother, it is so important to get a diagnosis of her type of dementia.
4. I think you live in Canada based on a posting you made on Nurse Dina's forum. You have a National Health Service. I do not know if it works the same as in England. I do not know if that system includes automation follow ups on patients.
In the U.S.A. doctors routinely follow up on their regular patients. This includes specialists such as geriatric doctors. An exception could possibly be if that specialist was seeing someone on a consulting basis such as for a second opinion. If your Mother does not require a primary care doctor referral to a geriatric doctor, I would suggest you call her prior doctor if he will exam her again. Or, find a new one.
My Mom's doctor before she moved to a facility always saw Mom every 4 to 6 months to check on her. Once she moved to the dementia facility, the neurologist checked Mom's nurses records once a week and saw her whenever there were changes showing up in her Alzheimer's.
5. My Mom used to live next door to Warren and I. Between 2002 and the end of 2007, we took care of Mom. Her Alzheimer's did not start showing problems until 2004/2005. By 2007, Mom was starting to not let us help her. She did give me the car keys without any problems.
Mom started eating less, ate mainly snack foods, stopped cleaning house, stopped changing bed linen, stopped washing, and sleeping more. When she became a health danger to herself and barred the doors so we had to climb through windows --- and then she tried to run away from home, the doctor helped us move her to a dementia facility.
At different times, we have gone through sun downing, agitation, confusion, anger, endless phone calls (until she forgot how to use the phone), loss of memory, loss of communication skills, and more. She has lost a lot of weight and now looks like someone who was released from the death camps in Germany in WWII.
She was moved into a hospice service April 2011. A hospice nurse or doctor visits Mom once a week to check on her dementia progression.
It has been a constant struggle for me to accept what has been happening to Mom. There are days I just wanted it over for her because it was difficult to see the "stranger" who has taken over her body and what is left of her mind.
Now that we have moved Mom to a private care residence with only 8 patients, I find there are days I enjoy visiting my Mom. But, it still hurts me.
If your Mother has a type of dementia, find out as much as you can about it --- including prescription medications that can help her. Sometimes the disease process is short and other times longer.
I wish there were some magical words of wisdom I could give you to make it easier for you. Learn to take it one day at a time. Don't dwell on the past or worry about the future. Find yourself a good reliable support system to help you through the time to come. Find your Mother a good reliable experience doctor who you can trust to take good care of her. And then work with that doctor to give your Mother the best care you can.
See, you are not the only one who rambles. This is getting too long. Come back as often as you feel you need to talk about your Mother. And, don't worry if you might "ramble" sometime. I think anyone who has a loved one with some type of dementia will rabble ever so often.
Nancy
2/04/2012 Good Morning Arlie,
Since you asked about if I had cared for Mom before she went to the dementia facility, I wanted to give you the name of the site where I am posting her story.
I originally joined the Caregivers' forum April, 2008. We moved Mom to the dementia facility end of 2007. In 2010, there were so updates made with the website and my postings from 2008 to mid-2010 could not be transferred. But, maybe my posting since 9/22/2010 will still give you a picture of my Mom and her Alzheimer's World.
It is called "Mom Doing Okay Sort Of Some Days....". Located on Caregivers' Forum With Ann.
Maybe you have found it already. It is the story of Mom's, Warren, and my journey through her Alzheimer's World.
The road we all travel with a loved one with a dementia is never easy. But, we try to do the best we can one day at a time. As Ann frequently tells me buckle up that safety belt to prepare for that next turn in the bend or the next dip on the roller coaster ride.
Nancy
Hi Arlie,
I am glad to see that you are maximizing and integrating the allopathic and naturopathic care for your mom, and I assume you have read some of the articles on coconut oil and MCT on our site.
Clearly if the intervention makes a difference for the better, then it is something worth pursuing. The only issue is whether it causes any other medical problem elsewhere in your mother's care. Was her hospitalization related to that?
Vascular dementia has been known to stabilize and level off, when the underlying medical issues are addressed. It does not necessarily improve -- which you have seen with the short-term memory loss -- but it certainly can be arrested and level off to a plateau if one addresses issues such as high blood pressures, diabetes, high cholesterol, obesity and so forth.
How long it can be held off is always a question, but it varies from one to another.
For many, it can be years.
Maintaining optimum health, obviously, is key. But it is essential to seek and maintain a strong relationship with a competent, experienced professional who is an expert in this area. That means a geriatrician, gerontologist, geriatric neuropsychiatrist or neurologist, and/or similar medical professional, and if you can find one with naturopathic credentials, that is even better. They do exist.
It sounds like your mom is doing pretty well, and it's good that you are there to keep watch over her. I am sure she feels much safer with you around. Keep us posted,
Ann
Hi Ann
Her issues in most of her Hosp visits were due to anemia. I guess my mom has always been anemic. Her hemogloben goes very low, although it has not been for some time now and not since I started her on the coconut oil blend. Really since I have started the oil, her health has been great, blood tests, chol, kidney and liver function. My moms chol. has been high just in the last year and the Dr. put her on a med., but the med lessened the effects of the oil and I cut it in half and when she had good chol. test I took her off. It is then that the Dr. was upset with me. But at one time my own chol. was high and when I changed my eating habits the tests show back to normal. So I know that by eating right chol can be lowered, although with my mom, this Dr. says that my moms body could be making it and would need the med to keep it down. So I hope that the oil will keep it down. Next trip to the Dr. I will ask for an apt with a geriatrics Dr. again, but it does take months and even close to a year to get in. I do not feel that her Dr. now has enough experience in the dementia dept or with seniors. But Dr's. are difficult to find, where if a person has a Dr. you can't just change to another one. Most Dr's only take new patients if they don't have a Dr. at all. It is pretty much unheard of to get another Dr. because of a conflict or inexperience with a specific person or disease.
2/05/2012 Hi Arlie
Sounds like your changing your Mother's food may be helping her with the anemia problem. Or, it may be a combination of changing her foods and the coconut blend. Only time will tell.
As far as the cholesterol medication, I have to take a statin medication. Sometimes taking one for only 30 days can make a difference in the cholesterol test results. Again, only time will tell if it was the statin medication that helped, the coconut blend, a diet change, or a combination of events.
My Mom had high cholesterol until we moved her to the Alzheimer's facility and they regulated her diet. Within a few months, her cholesterol was in the normal range.
Arlie, your Mother may or may not need a statin medication to control her cholesterol. But, I have read about some people who have high cholesterol no matter what statin drug they use and with or without a diet change.
I wish you the best in getting the proper treatment for your Mother.
Nancy
Hi Nancy
It is very difficult to get or have a Dr. here. I do take my mom once a month to her Dr. for a B12 shot, but we have 3 geriatrics Dr's. in the whole city of over a million people. So the health system sends out health nurses to check on people with dementia, then if they feel there is an emergency you might get in to the geriatrics Dr. in 3-4 months. You do not get called back though. If there is a problem the health nurse come again and you start all over. Sounds like you have a much better system, and I guess thats why I'm here for answers, most of what I know is from my own research, and the pharmacy, I think they are even more helpful than some of the Dr's. At least they don't snicker at the new things I have tried. It is info from the pharmacy that made my decision to start my mom on the coconut oil blend, and after that consulted with my moms Dr.
Nancy I have not been able to read your blog about your mom yet, it makes me so sad to read about people like my mom and I know that it is exactly the same thing, but for the first year with my mom I hid from her as often as I could and I cried. Right now when I read the posts it takes me back there, and maybe it has not been long enough that my mom has been better, or maybe no time will be long enough. Ya know I feel much better reading the posts about people who have tried the oil and it's been working for them as it is for me. Thank you for adding some little bits of info about your mom. I know I can't live by what happened in the past and won't ever forget it, maybe it will take some time to get past it and move on. The fear is still there right now though.
I have always been a bit of a health nut, raising 3 children and now having my mother. We have always eaten healthy foods as did my parents, although for a long as I can remember my mom was on a diet, although not much over weight maybe 20 lbs at most might be where the anemia came from. Her high chol. in this past year, maybe because I had to crush her meds. at that time 8 different ones and I would put the crushed meds in a fruit cup and light whipped cream, this was 3 times a day. Now since the oil she takes 4 meds. on her own. She used to take exelon for the dementia and seroquel for the delusions. I stopped giving her both of those since I started the oil. I do hope that the oil will keep her chol. down, as I don't have to crush her meds any more and hide them in food I don't need to give whipped cream, the rest of her food is nothing that would raise her chol. So maybe it was the whipped cream that took time to raise her chol. I am not sure what it is that would be making the anemia better.
2/05/2012 Hi Arlie,
1. Giving your Mother her crushed pills in a fruit cup and light whipped cream probably is not the cause of her high cholesterol. There are many factors that can cause it. I do not know how much you really know about cholesterol -- what it is, what causes it, treatment options, etc. The following are to things you may want to check out.
www.mayoclinic.com/health/high-blood-cholesterol/DS00178 Also, the Medline Plus website has some good info also that may help you. Just click on the following:
http://www.nlm.nih.gov/medlineplus/cholesterol.html
2. It is good for a person to be concerned about what they eat. The problem that sometimes comes up is when a person goes to the extremes. One of my aunts almost caused her son's death (when he was 4 - 7 years old) because she was a strict vegetarian and did not give him the nutrition he needed as a young growing child. That is probably why red flags wave in front of me when someone starts talking about using health food products and supplements, etc.
3. Arlie, dealing with what is happening with my Mom is not easy for me either. But, in order to help my Mom I have had to deal with my fears of loosing her and what the Alzheimer's is doing to her. It is not easy watching Mom forget who I am, looking like a death camp survivor, or becoming a mental child at times. I have no choice but to become strong not only for her but for me.
I have used dementia support groups to help me deal with my Mom's Alzheimer's disease progression. If you find a group you are comfortable with, the ability to share your fears, thoughts, and what is happening will help. It also helps to hear from others how they feel and how they deal with it.
My husband and a few close friends have been great about letting me bend their ears about my feelings, my fears, etc.
And Arlie, what happens when your Mother's dementia starts getting worse again? How will you handle that? Hopefully the changes will be in the distant future. But, the better you are able to handle what is happening with your Mother, the better you will be able to help her. And, the stronger you are the better you will be able to navigate through the situations you will need to -- now and in the future.
And, you don't have to forget the past. Just learn to accept what has happened. Use the lessons you have learned from the past to help you become stronger for your Mother and provide the help she needs.
4. You may want to find a book by Leeza Gibbons. Her Mother died of Alzheimer's and the family wrote a book about their experiences. It is called "Take Your Oxygen First.....". Part of the book explains why it is so important for the caregiver to not forget to take care of themselves. If we don't, then we will not be able to help our loved ones.
5. I am so sorry about the health care system you must live with. My husband's first wife was from England and we still keep up with her family. If necessary, do you have the chance to go with a private doctor care system rather that only with the National Health System?
Just don't ever give up on yourself. At least you keep looking into different options for your Mother's care. Just be sure you are dealing with good reliable sources that will not lead you down the wrong path.
Please keep in touch. And, try reading some of my Mom's and mine journey. I have had to deal with some hard cold facts about my Mom and her disease. I am working on letting her go and providing only comfort care. No more rescue care for Mom. With hospice's help, Warren and I will be able to give Mom the ending she has earned and deserves.
Nancy
Hi Nancy
I will look up the chol info again. I do think I am better at the health food stuff, although I research everything to the end, as I am now with the meds. a home for my mom, the coconut oil blend. It's like I get all of this info and have to double check and then figure out what is the right info and what is not, and then what I will try and not etc. I do believe in having variety in our diets and stay away from the bad foods such as packaged foods etc. And then of course every 3 mo checking with the Dr.
We do not have private health care here, unfortunately it is what it is, and I guess if a person doesn't know any different it will stay the same. My only fear now is that this horrible disease might come back, as right now I am enjoying my life again. I do know that I will have to face the reality, but in hopes that I may have someone come in to cover half the work and care for my mom. The book sounds very interesting, I will look into it.. I am a very optimistic and positive person, although this disease has dragged me down a long way, but I have a lot of strength, I am devoted and determined, there is no giving in here.
It sounds like the most heartbreaking time in this disease is where you are at right now. Caring for mom in the middle of the disease I had found there was not a lot of time left over to think, it was all doing and what comes next. I used to get caught up in moms world, but am finding now I have some time to think and that I still have my world.It seems we work so hard at beating this disease in some way for years and after all of that we all end up at the same place heartbroken, but I know that we will all have the thoughts memories of 100% caring and doing the best we could do for our loved ones. I know that I will get to read your journey and am looking forward to it, as I do believe in learning from others experiences, and reading of these experiences lets a person know they are not alone at all.
2/07/2012
Sounds like you are trying to do the right things for the right reasons. You seem to be questioning things and getting information that will help you in making those important decisions for you and your Mother. It is a fine balancing act to avoid going too far in one direction. Wish you the best.
I am glad thinks are quieting down for you and your Mother. Enjoy this time and enjoy making some good memories with your Mother. And, maybe it is a good idea to consider having someone come to your home to help with things later on.
It is difficult for me to decide what part of Mom's Alzheimer's progression has been the worse. Each change has brought its own changes to deal with and accept and move on. The waiting has not been easy either. Watching Mom change into a stranger (mentally and physically) has been hard. I agree with you that changes that created problems were never good.
Now, live is becoming easier for me. At times it is even peaceful. I am letting go of Mom. In a way, I would welcome her death because Mom would be at peace again and no longer suffering through this Alzheimer's disease process. Mom would be free from this earthly bondage the disease has put her into. So maybe now is a better time for me than the last 10 years -- especially the last 4 years.
I wish you the best at finding the right path for you and for your Mother. Enjoy life as it is now. But, be prepared for that next bend or dip in that roller coaster ride. This disease can drag a person down. The trick is to be stronger than the disease and pick yourself up again and carry on.
Nancy
Hi Nancy
I think as family members we suffer as much only in a different way. We are definately more aware and that is probably why we suffer as much. It would be a relief as this disease nears it's end as we know then that our loved one will finally be at peace. I cannot imagine what it is like for my mom, but I sure know what it is like for me going through this with her. I hope this oil controls the disease because I'm not sure how to even prepare myself. I have a hard time even thinking about how my mom was. Every time I do think back I cannot stay there long and thank my lucky stars she is better. I really don't know how I did it for all those past years. When you talked about climbing through your moms window to get in, I know exactly what your saying. I hope that I'm not just prolonging the agony. I think this disease makes a person stronger, what I don't know is how many times you can keep picking yourself up. This disease shows no mercy. The hardest thing I found was watching this disease take my mom away and left me this person who really was not my mom. I really wish it wasn't too late for your mom, as I would even buy you a bottle of this oil to make your life and your moms life better.
2/09/2012 Hi Arlie,
There is a video that the Alzheimer's Association gives at Mom's previous Alz. Assisted Living home. The person without the disease wears special head set. It is supposed to show the person how the person with the Alzheimer's sees the world. I am not brave enough to go through that sessions. Its hard enough for me to be living on this side of Mom's world.
If the coconut oil blend helps your Mother to have a more normal daily life, then enjoy those times. Try not to waste precious moments thinking about the past. Don't dwell on the future; but be aware that things will probably change sometime unless a cure is found.
You mention not being sure how many times you can get back up and carry on. Well, you love your Mother. You have made it so far with her and still have your sanity. We caregivers pick ourselves up as often as we must in order to provide our loved ones the proper care and love they need. My Mom is mentally becoming more like a child. G*d never gave me a child of my own --- but He is giving me one now, my Mom.
Yes, I have some sad times and some angry times over what is happening with Mom. That is when I go to someone in my "support system" and we have talks. My husband, Warren, is really great about letting me bend his ears. I have a few very close friends that get to have lunch and a few hours of talking with me about Mom. Then, I also have found Alzheimer's support groups. I pop in and out of the support groups based on what is going on in Mom's Alzheimer's World.
As Mom's disease has taken more of her away, I have learned to not spend much time on what Mom was like before the Alzheimer's really started taking hold. It is more than enough for me to see the changes every time we visit her. I now look for changes caused by the advancement of the disease. This helps Warren and I work with the hospice team to better decide what we will and will not do for Mom.
I appreciate your offer of help. But October 2011 we knew Mom's disease was to the point where we had to start letting her go. No more heroics. Comfort care. No feeding tubes in the future. Our main concern is to keep Mom as comfortable as possible until she dies. We just want her at peace in a better world than she is in now.
Take care of yourself. Don't try to care for your Mother all on your own. Let people help you. Find the support you need to cope with your Mother's changes as they come along.
Nancy
Hi Nancy
I would watch the video if it were here, but I have not heard of it. I don't know if I found the coconut oil in time , I think now that only if I found it sooner, my mom would be even better, memory wise. It is hard to tell if her memory is any better or not, although I here a lot of stories and these people say it brings their memory back. It is hard to know what to believe, I guess until you try it for your self. So now that my moms behaviour is better I am anxious to see if it helps her memory. I would actually like to get her in for an MRI or something that may tell if the plaque is going away, but I don't think that will happen. I here it is expensive and the Dr. needs a real good reason for ordering one. My moms Dr. right now does not believe the oil is making my moms symptoms go away, but this Dr. did not know my mom before I started giving her the oil. So what does she know. I try not to think of the past, and more of the future and what is in store for me. But then life is what you make it . I would like to make my life with my friends now. One reason I started my mom on the oil is to try and give her a better life than she had in the last 5 years I think that I have done that now, and think that now she is much more aware of where she is and her surroundings that I could explain she needs to go into a home now. For 5 yrs my siblings were afraid to see my mom because of the disease, and now just starting to come around because she has been better, but I don't think they will help anyway. They will probably think that she is better so I don't need any help now. I have 4 siblings who basically left me on my own, that's why I am thinking of a home for my mom now. She will get the care she needs and they will give her the oil, the only thing left will be my guilt, and I hope that I can live with my decision, although there is a 2 yr waiting list to get her into a home. I think we do more to make our loved one as comfortable as possible than we do for our selves when caring for them.
2/14/2012
1. I have found an Alzheimer Society of Canada. Please click on http://www.alzheimer.ca/en I did not look at the entire site, but it appears similar to the U.S. Alzheimer's Association. If this website is for a similar group to our Alz. Assoc., then maybe they will know about the video.
Another site you may want to check is www.alzfdn.ca This is the Alzheimer's Foundation for Caregiving in Canada. Again, I did not search the site to see what information this site offers.
I do not know what type of dementia your Mother has, but maybe one of the above can offer you some help.
2. Personally, I am not sure about coconut oil with MCT or coconut oil blend as far as helping individuals. I have been unable to find any scientific studies done to try and determine how effective its. The only thing I have found are testimonials from people who have given it to their loved ones with Alzheimer's. Some people said it has helped their loved ones regain memories. But, some have said it has not helped or it helped for only a short period of time. I have not found many testimonials that have given any long term use results.
3. Maybe you need to concentrate on how the coconut oil blend is or is not helping your Mother. At least for now, forget about other peoples stories. Just is it helping your Mother and in what ways?
4. Again, I do not know if your Mother has Alzheimer's or some other type of dementia. But, I do know that Alzheimer's disease slowly destroys the different parts of the brain. That is why there are problems with such things as memory, decision making, thought processing, communication breakdowns, etc.
Personally, I believe that once a portion of the brain has been damaged by Alzheimer's, nothing we currently have can regenerate and heal that part of the brain and the processing work it controls. This was also confirmed by one of my Mom's doctors (neurologist and psychiatrist).
5. If your Mother has Alzheimer's and seems to be better for now, I don't know that anyone can tell you how long this improvement will last. Maybe now is the time to start looking for a special home for your Mother to move into.
6. I think all caregivers feel guilty for a certain period of time if they decide to place their loved one into a dementia facility. I did -- but I no longer feel guilty. My Mom is in a place that has trained staff who know about Alzheimer's and how to help people with the disease. Mom also is now in hospice service. She is checked weekly by nurses and/or doctors. Mom is provided the care she needs to get her through this horrible disease. As much as I love my Mom and would do anything I could for her, I cannot provide her with the specialty care she receives in the dementia home.
7. Arlie, you need to get back to your own personal life. It is great for a caregiver to provide the proper care for their loved one. But, it cannot be at the expense of the caregiver's mental and physical health. If you decide to keep your Mother with you, then you must find a way to balance your personal life, your work life, and caring for your Mother. If you have a mental or physical breakdown, what good will you be to her? Do you trust your siblings to take over her care if you get sick?
8. If there is a 2 year waiting list to move your Mother into a home, now is the time to start looking. In the meantime, can you afford to pay for some home health care people to come in and help with your Mother? Or is there an Adult Day Care near you that works with people who have Alzheimer's or another type of dementia?
Life is not easy when we are watching a loved one with Alzheimer's, another type of dementia, or any other life threatening disease. With G*d's help Warren and I do what we can for my Mom and trust G*d to be there to care for her and for us.
Take care. Nancy
I would like to be in contact with others using the oil and then I may have an idea of what to expect if they have been using it longer. I am really wondering how so many people had almost immediate results when I didn't. So are they really truthful, or was I not really noticing the improvements in my mom until a person I couldn't help but to notice. We do pay for someone to come in, and are going to have some one more often, so we can go away, but even that is a lot of preparation, and worry for me while we are gone. We do have the space for my husband and I to have plenty of time in our house. My mom has like a little apartment to herself and caregiver in a part of our house. I am probably making it sound bad like it used to be when it was just me as caregiver, and before I started the oil but it was bad and I never want to go back to that, and could never wish that life on anyone. It would be a hard job even if a person gets paid for it. I know that the way my mom was before the oil, I would never do it for a living. Now I feel selfish. I guess how it is now is like having an ill child, and you would do everything in your power to take care of that child. I think that I have done what I could do and gave my 100% and I want to be done now or soon. I would like to live the rest of my life with my husband sort of worry free and simple, pick up and go sort of life with no complications. I hope this doesn't sound terrible of me, but I'm sure a lot of people know what I'm talking about, or at least I hope I'm not the only one that wants that. Thanks for your ear again Nancy
2/21/2012 Hi Again Arlie,
Hey, I got two ears that are pretty flexible. Although, the tinnitus ringing noise in side can sometimes keep things jumping.
Wish I had an answer about why some caregivers say they have faster and/or better success with coconut oil than you may be having. Sometimes people may not be telling the whole truth. Sometimes we want something so badly for our loved ones that we may see them better than they really are. And sometimes maybe a particular person will show improvements quicker. Plus, what type of oil is used, how frequently, and the dose may all influence the outcome.
Every person reacts differently to things --- medications, coconut oil, etc.
Arlie, so far coconut oil (of any mixture) has not been shown to be a cure for Alzheimer's or any other dementia. I have yet to read a report that states (1) it cured someone AND (2) made the person whole back to before the dementia took hold. I have read where some people state their loved one got better. I have not read about any long-term results of using coconut oil that has improved someone. By long-term, I mean more than 1 - 6 years.
As long as you are a kind loving daughter providing the best care you can for your Mother, how can you call yourself selfish? You have someone come in to help care for her. You and your husband have set aside rooms for your Mother to live. You make sure she is well cared for whenever you and your husband take a trip.
I can emphasize with you comments about wanting it to be over and that you do not want to see your Mother's behavior go back to what it was before. I understand your comments for wanting it to be done and for your husband and you to be able to live a more normal quiet live again. I doubt that you are alone in having those thoughts and feelings.
Watching a loved one living through Alzheimer's disease is not easy. The disease is not a pretty site to watch -- I have been on that journey with my Mom for about 9 years now. And, now that Mom is in the final stages, I want it over for her and for me sooner that later. But, again, the disease will pick its time table and not mine.
I have learned that I cannot cure Mom and that things will never be the same as it was before her Alzheimer's started. Everyday it is a testing of my Faith to move on in life knowing Mom is still suffering with this horrible Alzheimer's disease. Not knowing when it will all end for Mom sometimes makes it harder to keep a positive outlook on life.
I cannot cave-in. I must keep on going one day at a time. I must keep up my Faith and never forget that G*d is still right next to me to help me and to help Mom.
Wish I you the best. Try to maintain that positive attitude. Try to make good happy memories of the good times with your Mother. For the future could come quicker than you expect and then only the good memories will be left.
Hey, anytime you need to bend ears is fine with me. We are all in this struggle together. Distance may keep us physically apart, but reading about each of our struggles makes a common bond.
Take care. Enjoy the time with your husband and with your Mother.
Nancy
1/2/2012 Welcome Arlie to Ann's Caregiver Forum.
I found your posting under Nurse Dina's form concerning the diet your Mother is using. Nurse Dina handles a lot of questions concerning specific medications, treatments, etc. for different dementia.
Here on the Caregiver Forum we are individuals caring for loved ones with some type of dementia. We write about what is happening, our frustrations, looking for help in caring for our loved ones, etc.
So, welcome to our group. What we normally do is just post about a concern we may be having to get Ann's suggestions or find out how other caregivers may have handled things. Or, sometimes we just post about the frustration we are trying to work through at the time. The Caregivers Forum is here to provide support.
Has your Mother been diagnosed with a particular dementia? That is very important. Every dementia is just a little different and sometimes different treatments are used for different dementia.
It is difficult for doctors to sometimes determine just what type of dementia a person has. And, sometimes more than one dementia can be present. This is why a person needs to see a specialist who has knowledge and experience with different dementia. Sometimes a geriatric psychiatrist is the doctor of choice. Getting the right doctor will help in getting the right diagnosis. My Mom was diagnosed by two psychiatrists -- a geriatric psychiatrist and a psychiatrist neurologist.
My Mom is 89 and entering final stages of Alzheimer's. Early on I read a book "The 36-Hour Day" which answered a lot of my questions. One of the coauthors is Dr. Peter Rabins. The 5th edition was released 2011.
Please come back and let us know how things are going. Sometimes we may be a little slow in answering you. But, we do not want to ignore you. This road we travel is very stressful (to say the least) and we all can use all the support we can get.
NancyA (Nancy)
Added Later: Yes Arlie, sometimes we need more info to be sure we are providing the answers you are looking for. If we don't, just keep coming back until you get what you need. Also, my father-in-law died with Vascular Dementia and my best friend's Dad died with Lewy Body Dementia.