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For many years, Mayo Clinic and the Minnesota-North Dakota Alzheimer's Association have joined together to offer the premier caregiving conference. This year, on March 17 in St. Paul, Minn., we will gather once again for "Meeting of the Minds" to hear and connect with some of the leading Alzheimer's researchers including Kristin Yaffe, M.D., professor at the University of California-San Francisco, and Ronald Petersen, Ph.D.,M.D., director of Mayo Clinic Alzheimer's Disease Research Center.
The conference will also feature Olivia Ames Hoblitzelle, caregiver, teacher, therapist and author of "Ten Thousand Joys & Ten Thousand Sorrows". More than 30 breakouts sessions will be offered on topics such as ambiguous loss, compassion fatigue, legal and ethical issues, mental heath problems in dementia, home safety, as well as special sessions on Lewy body dementia and frontotemporal dementia. There is also a one of a kind "Living Well Workshop" for people with early stage dementia and their support partners.
Please consider joining me and more than a thousand other people to learn, connect and engage. If you do attend, stop by and say hello. I will be at the Mayo Clinic booth much of the day. I'd love to meet some of you. The full conference schedule and registration can be found at: http://www.alz.org/mnnd/in_my_community_13666.asp.
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You may need to speak slower now and use less words. And give him more time inbetween sentences to comprehend. My mother was only able to comprehend - up until the end - if I spoke in this way. Wishing you the best,
I need help. My husband has been diagnosed with Alzheimer's and has done really well for quite awhile. Yes he forgets more and more and it is obvious he has a problem. Lately though I've found that when I talk to him it is like I'm speaking a different language. He looks at me with a blank stare and I must repeat it several times before he finally acts like he gets it. Please tell me if this is normal; whatever that is or does he now have something else wrong????? This is so hard to know what to expect and what is real and what is fake anymore. He still tries to joke and make it all seem funny when he doesn't get it or remember it.
Would like to know if there are any similar conferences scheduled for the near future?
I attened your session on Saturday, very good. Where can I find outline of your session, I found it very interesting regarding stages of care giving and other people you mentioned
Have been meeting many caregivers while my husband is being treated at a major medical system...one man who has been a caregiver 3 times, asked me to relay to our group that the in person meetings are very helpful to him. However, it seems we could be sharing needed information about state laws, preparation of the necessary list of things one must do at the end of the journey of the person, and how helpful it is to get those things done ahead of time so as to feel more in control and less stressed during the caregiving and during the grief period when we might not be thinking clearly.
Also, we will be stronger now and when people may attempt to take advantage of us in the grief period. We are targets!
Thought he had very good suggestions for all of us. We need to share our feelings as well as our experiences in the business of being well prepared and smart before so that we will make wise
choices for our loved ones as well as us. Thanks.
From this person, I learned something new about state laws in Florida even though my husband and I used an elder lawyer...I'm very grateful to him for sharing with me. And he has a good point about our caregiving groups. Laws change all the time!
We are busy making our loved one's lives the best they can be
and have no time for being smart or up to date with all going on.
Share, share, share...then check on what was told to you, and act so we feel better and more in control of the disease process for less stress and being smart.
PLEASE HELP US LEGAL HEALTH CARE SURROGATES AND CAREGIVERS!
Sometimes in the health care setting the MD is making decisions based what the patient says to the MD, and is not responsive to what the legal caregiver is reporting..who is responsible? The patient that has no memory, and is not answering things accurately...however, when the caregiver who is legally responsible as a health care surrogate appointed by the patient years ago voices the behavior, feelings, etc. to the MD, many times the MD ignores the person who is with the patient 24/7. We as caregivers see, hear, does have medication responsibility, take care of our loved ones and our reports are ignored by the MD. This goes against law. What shall we do if we experience that the MD is not doing the best for the patient and we have the responsibility? Shall we deal with this right during the appointment in front of the patient, that will be upset by the conversation? Or, tell the MD, we need to see them alone?
If the patient is in a care center with papers sent, they must make notes and treatment, medication changes, etc. in writing...shall we all
demand this? Why not...the MDs are being paid, not us, when we may be ignored as the patient is in the long run...and the MDs are being paid!
Thank you very much for your verification and help...we want the best quality of life for our loved ones! And, we are advocating and responsible for them...they trusted us.
If a person is suffering from hypothyroidism would they have spatial issues like the ones discussed with Alzheimer's?
Earlier some one commented on Dementia vs. Alzhemiers. If you read further on the MAyo clinic's website there is a great description. Alzhemiers is a type of Dementia. There are many types of Dementia. A person can have dementia at any age, but the reasons for the dementia vary.
That said I was recently talking with a coworker about her Aunt who is aware she has early onset dementia. She refuses to talk any further with her doctor. She hopes that by not getting a more specific diagonsis that the dementia will magically dissapear. It wont. Early diagnonsis helps your MD to get a patient statred on a program that can slow the progression down. It may give you a few extra months or a few extra years with few symptoms. Believe me time with more cognition is invaluable not only to the person with Dementia, but there loved ones. I would give every $ I have to have my Mother back in early stages again where she still had a social fillter.
To Frank, I am happy for you. It does make a difference when medication is started. I had the same thing happen to me.And then I continued to research my diagnosis of Mild Cognitive Impairment on Mayo website and found the clinical trial HABIT. Awesome program, for couples, made all the difference for me, I love my life again, I have purpose and things to do before medication takes over.
Yoga, diet, hobby activity and more. We are attending the Meeting of the minds and a HABIT reunion on Fri eve before. I know some people have to fly,and it's costly,we have to drive 5 hours, but it's worth pinching pennies, it saved me from early fate. If you and your wife would be from wisconsin, we could "partner up" let us know! Good luck God Bless you for listening and caring for her.
Also, I would love to be there and learn to be more patient...I can just feel how empowering I would feel just being with you, the HABIT group, Dr. Yaffe, and Dr.Petersen. Since most of Mayo's events are videoed, and one signs a release when one enters the meeting,etc., can they be in webinar form or please may we receive the content?
We need the meetings for our support before we totally break down ourselves...I fit in the research of the decline of my own health of a caregiver to a T. However, if I am unable to move to Rochester and participate in all of your inspiring events and groups, I hope to live in a hotel instead of assisted living or skilled care. Remember what NORMAN COUSINS did..live in a hotel and watch old comedy movies!
Thanks for your consideration of all of us being there via webinar
or getting the information...we are there with you in spirit!
Will Dr. Petersen and you write a new book on the HABIT, and the regular meetings soon? You know it would be a HIT! And the caregiver's own health would improve instead of decline.
HYPERBARIC OXYGEN THERAPY IT WORKS. My wife has Alzheimer’s since 2007 she started having memory loss. She started OXYGEN therapy just a few weeks ago 1/22/2012, and it IS WORKING GREAT.
The conferences sounds wonderful! For those of us with no possibility of attending, will it be possible to receive printed materials either online or in print form?
As with most caregivers this can either be rewarding and joyful or a nighmare. Mostly I am glad that I can help my father in law as otherwise he'd be shipped off to some VA facility lost in the masses. My reason for writing is that recently the VA decided that he (in later stages of the disease) should have a b12 shot. This is truly our nightmare. We had finally gotten a violent angry person calmed with regular medications. He was in a happy mood most of the time, didnt know what was going on but the anxiety and worry, anger and mean side was at bay. After the injection he has been lethargic at times, worred out of his mind, can't speak words moreless sentences, and is scared beyond measure. It gave him the ability to think but not follow through with anything. Now he physically fights us, and is just a mess. This might not happen to everyone however I felt I needed to let you know because it made his life horrible as well as the 4 caregivers and wife that is blind and just listens and has no idea how to help him. Becareful what "new" medicines you try. Research everything.
God will bless those that help others. God bless you all.
Suzanne, Don't go by the looks. It is very tasty. Keep it at room temp. and use it like butter. I think it's is helping my wife. (google it) It would take over a pound of flaked coconut to equal 1 tps of oil.
I went to the store for coconut oil, but it looked so unappetizing (like lard) that I couldn't buy it. Does anyone know how much flaked coconut equals 1 tablespoon of oil?
My wife has resisted taking her Aricept for the last six months, sometimes violently. About six weeks ago , I gave up trying, guess what, her symtoms improved steadily each week since then. She is more cognitive, responsive, and cooperative. My doctor is very pleased, as am I.
Unfortunately, I won't be able to attend the conference. Will there be information from the speakers and breakout session that I can access online or by mail? Please advise.
I don't think there are any real "experts" on this disease. The closest you will come to a true expert is those of us who have been caregivers for a number of years. I am caregiver for my wife diagnosed in 05. Who knows if the current meds work or not? I do know that I work with her daily to keep her mind as sharp as possible. I have her on a low fat diet with coconut oil and I make sure she and I walk two miles a day rain or shine. I can see where she is worse than she was a few years ago but the progression is slow. She has almost no short term memory, but if you were to talk to her you would probably not be able to tell she has Alzheimer's.
Those of you who subscribe to the old Alzheimer's chat before they "new and improved" it know who I am and the modest success I have had with Bobbe.
Any way that materials and/or presentation(s) can be recorded for those who are unable to attend?
The word Alzheimers & Dementia are so confused. In my humble opinion if you have actual Alzheimers you are DEAD before 75, Dementa individuals live on into their 80's & 90's. Is their an actual diagnosis for Alzheimers except autopsy?
REGRET UNABLE TO BE PRESENT BUT HERE IN CAPE TOWN WOULD LOVE TO READ OD THE OUTCOKME OF THE CONFERENCE ANDN LATEST UPDATES.
Any thought..or strategies..to summarize "the key ingredients" of the conference for those who can't fly or get there in person?
I eagerly read the blog and comments and have participated in some, however, most comments concern caregiving for mobile patients....my 82 year old husband with dementia fell hard two months ago and has been bedfast ever since requiring total care and Hospice care here at home. Of course he fights not being able to walk to the bathroom and when he "sundowns" it is often catastrophic; otherwise he is okay. He takes Risperidone twice a day, prilosec, Zoloft, and....small dose of morphine - the wonder medication....without that he would be extremely uncomfortable as other things are going on it seems, in his body that was once so healthy and strong. He wants to "go to work" usually between 9 PM and 1 AM....and becomes rather violent until I can slip the morphine dose (small) under his tongue - then quiet, peaceful sleep. I certainly support research - this is a terrible disease. I tried coconut oil once - fried some potatoes for him using just a little - it worked like a laxative. Maybe it isn't for everyone. I like it for the skin! There is a shortage of caregivers for some reason - it is an honor to volunteer at Hospice or become an aide. I am learning things everyday - how to live and learn with sundowning and personal care. Prayer gives us strength we never knew we had.
Thank you Theresa, will check it out.Whats hard is while we wait to find out,when everyone else knows,we don't get to know, it just happens.
The Alzheimer Association provides a general idea of 7 stages - this resource might help. http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp
So looking forward to the Meeting of The Minds and all the wonderful information we can get. It will be great to see you all again,Thank you for all you do in making our lives better. Is it possible to answer annonymous question? It is so hard to understand, we all seem to be walking hand in hand,we need to keep our hands clasped tight with another, I think Meeting of the Minds will help.
Is there REALLY any diference in people with Mild Cognitive Impairment....and people with early stage dementia? Or is this not possible to seperate the two? and if not, are we as patients being decieved on thinking we have something less than dementia? Where is the "line" drawn? How do we find out? Truthfully....I don't think anyone can tell us:(
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