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    Angela Lunde

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  • Alzheimer's blog

  • Sept. 20, 2007

    Alzheimer's: Welcome to our new blog

    By Angela Lunde

436 comments posted

Welcome to our new blog from the Alzheimer's Center at MayoClinic.com. I am excited and encouraged about the possibilities we can create by this endeavor.

For many years at the Mayo Clinic's Alzheimer's Disease Research Center, I have been fortunate to facilitate groups for persons in the early stages of a dementia, as well as groups for their care partners.

Most often these care partners are husbands and wives, daughters, daughters-in-law, and sometimes sons, grandchildren and friends. Through this experience, I have discovered that the statement "about 5 million people are affected by Alzheimer's" is, in part, a myth. In truth, 5 million people may have the disease, but millions more are affected through the gradual loss of their spouse, partner, friend, confidant, and loved one.

Dementia, devastatingly, is a disorder that isolates those affected (both the person with the disease and their care partner). But in the modern world of MySpace, Facebook and other blogs, there is a new way to make connections, to reach out, to share common experiences such as grief, humor, despair, and hope. My belief is that this new blog can serve to bind us together on the shared journey we call Alzheimer's disease or other dementia. I invite you to share some part of your story and hear from others that you are not alone.

436 comments posted

blog index
  • April 10, 2010 6:34 a.m.

    Thank you for creating this my husband has alz diagnosed offically at 65 but now we realize how long he did have it. I have a blog I would love to share with others but not sure how to get it out there. Is there a forum where we can post links to our blogs? This is a devestating diease. We have two daughters 16 and 18 at diagnosis of their Dad it has been very had to handle this pain.

    - Sheri

  • March 25, 2010 6:44 p.m.

    My life for the last for the last 10 months has spun completely out of control. My husband is in the Army and had been deployed to Iraq. When he came home in January 2009 he took leave for a month. Our daughter and I had gone back home while he was deployed so, that's where he came to spend his leave. When his leave ended he returned to where we were then stationed and was prepairing for us to go to a new duty station. Though we were a long distance away from each other I could tell then that something wasn't right. He was having a hard time remembering the things that he needed to do and just trying to keep things organized. Long story short (especially since I only have so much space) my husband, who is only 40 yro.) has Early Onset Alzheimer's. From what I've been told his father, his father's sister, and his father's father all had it to. Though, back in the 60's and 70's it wasn't talked about nor was there treatment available. All we knew was that my husband's father's family had some kind of brain degenerating disorder. We never thought anything of it. That is until my husband started showing signs of too. Needless to say, I'm tired. I know that my husband is fighting a battle, but so am I. I'm trying to care for our 11 yro. daughter, take care of the house, take care of the bills, and care for my husband. He doesn't understand that the intimacy we once had for me is gone. He has mood swings, argues with our daughter, and throws tantrums, UGH

    - Alicia

  • March 16, 2010 3:22 a.m.

    I am currently taking a graduate course on social networking and one of my assignments is to contact a professional blogger to learn 5 tips of good blogging. My father is suffering from Alzheimer's and I found this site to be very useful. Your help is greatly appreciated. Thanks

    - matt

  • March 14, 2010 9:36 p.m.

    My father has Alzheimer's and is not sleeping well. We have asked his Dr. for something to help him sleep and he prescribes Xanaz or Seroquel (anti depression drugs) not sleep drugs. Is there a reason for this?

    - Bob

  • February 22, 2010 5:31 p.m.

    I am having a very difficult time taken care of my mother. She is very insulting and does not appreciate any of her children. She is extremely unhappy with her life. There is nothing we can do to make her happy. Psychologically we are all a mess. this what alzheimers/dementia is HELP!! Any suggestions...

    - eileen

  • February 15, 2010 7:15 a.m.

    My husband who I loved dearly died. I was in deep depression for a long time. During this time, my children had me checked for Alzheimer's. The Doctor said I had it and I've been trying to fight that diagnoses since. No one will listen nor give me another test, they just want to believe they are right. What can I do?

    - Agnes

  • February 10, 2010 7:19 p.m.

    This is my first blog! I have Alzheimers Disease. I am a retired teacher, and was teaching at the Community College part time, when I found out I had Alzheimers Disease. I decided not to teach in consideration to my students. At first I was at a loss, after teaching 45 years, but have found many ways to be useful and enjoy life. I want to share that the most helpful tool I found is walking and doing crossovers with my arms. I make the shape of a horizontal "lazy" 8 with my right hand and then my left hand, and then both hands. My son said he has seen a big improvement in my ability to remember. I also document everything. I write in a notebook everyevent, idea during the day. Then I write it in my daily journal on my computer. It really makes a difference in my ability to recall.

    - Beth

  • February 1, 2010 7:20 a.m.

    Here is a link to more information about the genetics of Alzheimer s Disease that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: http://www.accessdna.com/condition/Alzheimer_s_Disease/31. There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA

    - shashank

  • January 29, 2010 9:30 p.m.

    I was taking care of an 85 year old woman who has alzheimers illness. I was hired by her husband who seemed to like me. The job was going well. My role/task was light housekeeping duties along with general care for his wife. She liked to stay in bed until 2--so most of the time she slept...but sometimes she would like to talk. I liked the job alot--and felt things were going well-as my boss had mentioned he had no problems with me. However all of a sudden he got very mad at me--the next thing I knew his wife got angry at me too! When nothing in my behaviour had changed. I realized that the wife--decided that she didn't like me (in her 5th year of the illness) and was saying nasty things to her husband--in order to get him to stay at home. Is this normal for the illness---All of a sudden I watched her husband go from laughing and joking with me--to completely shutting down. And eventually refusing to even talk to me--...I no longer work that job---but would like to know if that is normal with the illness?? Was I caught up in some sort of emotional black mail between the couple with out even realizing it?

    - Megan

  • January 23, 2010 10:35 a.m.

    My mother in law obsessively tries to eat ice cream. She did not even like ice cream very much before Alz. Does anyone know why this occurs and have any tips on how to calm the obsession.

    - Shari

  • January 9, 2010 5:22 p.m.

    Mom has dementia. She has two care providers a husband and a daughter (me). I believe diet has dramatically improved my mother mentally. (You are what you eat.) Besides a daily vitamin & mineral-added B-12 and D. Has there been any additional reserach on these vitamins? Before I added these to her diet she was checked by her dr...low potassium & sodium were her problems-everything else was okay. We make certain she eats fruit, veggies and cottage cheese daily. We have good food available for her to graze on at table she walks by. (Her previous weight loss was frightening.) Mom is also on Numenda a great benefit to her. She had forgotten how to tell time - now she can tell time again and is gaining interest in other things again.

    - jan

  • January 9, 2010 10:58 a.m.

    My mother has been experiencing issues with paranoia and rage for several years, and has begun to exhibit other signs of mistrust (Such as carrying valuables in her handbag when she leaves home). She is 62 years old, and just called me to accuse me of having one of my aunts "interrogate her" as to what she's doing today. She is convinced that her family is trying to make her think she is crazy. How can we seek help for her when her symptoms continue to point toward dementia? I feel that our window for getting viable treatment for her is closing rapidly as these instances are on the rise. Any advise would be much appreciated. Thanks!

    - Jen

  • January 9, 2010 9:12 a.m.

    I cannot find any indication where Dementia is a fluctuating condition e.g. in-and-out of it to a dergree in the mental capacity of a patient. Please, someone help me to find that answer. Thank you in advance.

    - Harald

  • January 7, 2010 2:00 a.m.

    I'm not sure how to do this blogging but I was searching for information and encouragement tonight and found this site. I'd like to reply to Donna as we were at your stage about 4 1/2 years ago. My husband too was a master at joking so no one was sure about his problem, but I knew. I insisted the doctor refer us to a psychiatrist who diagnosed him. He had over three good years on medication and now has been in hospital since April. Before he left I thought I was out of my mind with the craziness of it all. You begin to wonder about your own mind. That's why it's so important to get help and find a support group soon. You've not only lost your friend/advisor/confidant but you are living in the toughest of mental situations. If you have to see his doctor on your own you should do it. It doesn't take long in a stressful situation like that before you wear down and start making poor decisions yourself. I miss my old husband with the good mind terribly and I feel guilty that he's gone, but I know I had no choice. Now when I visit him it's happy and not stressful, and he doesn't even know where he is so that's a blessing. My other advice is to not think too far ahead and start worrying about the future. Things do fall into place exactly when you need them. Enjoy your husband while he's with you and be thankful for the things he can still do. Don't be mad at him because he is a victim too.

    - Linda

  • January 5, 2010 12:32 p.m.

    Please excuse typo. I mean to say "that although I am not related to your mom, dad, spouse, etc., it doesn't mean that I, and others like me don't care to the depths of our beings.

    - K. Lynne

  • January 5, 2010 12:29 p.m.

    Caring for individuals with Dementia starts with love. I am a professional caregiver. Working with 23 individuals with Alzheimer's, Parkinson's, Frontotemporal and several other illnesses can be extremely challenging. Family members have a terrible load to bear and when they can no longer shoulder this, professionals are and must be there to share the 'burden'. I don't like that word, but never forget that just because I don't care for your relative, I don't care, work to exhaustion at times and worry when I am not there.

    - K.Lynne

  • December 29, 2009 6:19 p.m.

    My husband has had Alheimer's for about two years. It is so sad that he would not hear of himself having it that he would not go to the doctor. When I finally got him to go he still denied it and would not take the meds to help him, he was in complete denial at that time. Had a hard time getting a Doctor to refer him to a neurologist. We lost several years if only a Dr would have refered him, makes you wonder about Dr. as good as they are whey they refuse to refer people when it is so obvious.

    - Pat

  • December 29, 2009 9:13 a.m.

    Good Morning, This is indeed a very difficult and terrible disease. When my sister in law decided she could not take care of my father in law anymore so we quit our jobs and moved in with dad to take care of him. It was very difficult for my husband when his dad couldn't remember his name. It was hard when he would ask to go home and we were in his home. We went thorugh all the stages of Alzheimer's with him. When he went through the mean stage my husband threatened me that he was going to put him in a nursing home, but I was able to care for him while he went through that stage and we were lucky enough to keep him with us until his death. To me the most important thing to remember about Alzheimer's is MOMENTS. I would keep in my heart the good moments of the day, while he would go through his sundowners later in the day. I do have 3 suggestions: 1) find a good support group. You can go on line to Alzheimer's Association and find your state and city to find a support group. 2) Respite care is very important. If you don't take care of your self you will not be able to take care of your loved on. 3) Hospice is very important when they are at the end of days. They are very supportive for the caregiver and comfort for the loved one being cared for. Please check out www.mariefostino.com Just remember that to the world you maybe one person but to one person you may be their world.

    - Marie

  • December 28, 2009 4:56 p.m.

    I am in a very difficult situation. I need advise and opinions. While doctors suspect early Alzheimer's in my husband (63), no one will make a definitive diagnosis. He is a great confabulator to cover when he forgets and makes dismissive jokes to cover. I see significant gaps in memory, but not always. I witness things like mistaking his daughters who are 16 years apart, getting lost on vacation when he used to be a great navigator, and here's the best one: he bought a motorcycle and forgot. He was a heavy drinker for years, but hasn't touched any for over 10 years since it almost killed him. I can deal with a definitive illness, but this vagueness and unknown is destroying our marriage. I blame him for not paying attention even though I KNOW I have his attention. It feels like Groundhog Day everyday. What do I do?

    - Donna

  • December 20, 2009 10:55 p.m.

    My husband was diagnosed with Alzheimer's in September of this year, he is 61 years old. He is unable to work because of the short term memory and because he worked using a computer, the computations are too much for him. He does not remember to take his medication, so I am trying to help. I work and I am not use to being a caretaker. His medications he takes twice a day and if I get busy and forget, he only gets it once a day. I feel terrible that I am doing such a poor job. I picked up the medication packets from the store that have AM and PM on it and hopefully this will work better for us both. I am calling tomorrow to sign up for a support group. Any comments that can help a beginner care giver are welcome.

    - Rose

  • December 18, 2009 10:16 p.m.

    My husband had an MRI and damage is seen in the hypothalamus with gliosis. He doesn't exhibit typical symptoms of Alzheimer's, but he still has some short-term memory loss. He gets his directions confused as well as searching for the "right" word sometimes, but at 83 yrs. he is doing really well. Any thoughts?

    - Ferris

  • December 15, 2009 10:23 a.m.

    My husband of 43 years was diagnosed with early onset Alzheimers about 8 years ago at 52. His mother also had the disease and lingered for 20 years. I watched my husband's sisters and brother care for my mother-in-law then unfortunately, with growing families of their own, "mom" was put in a nursing home where she lived out her life, another 8 years or so. She did not recognize any of us. Since my husband and I lived out of state, the few times we were able to visit, I did see a flash of recognition when she looked at my husband, then passed into a stare almost immediately afterward. I am scared. WE have moved in with our daughter and her husband and my grandchildren ages 11 and 10. I thank my daughter and her husband and my grandchildren for their kindness, love and support. I see a difference in my husband that living in this busy household may prolong the disease or at least keep him engaged for awhile. More so than if we were in our own home just the two of us. It is a trade off at this point how to manage and did we make the right decision, etc. Our son, still lives in our previous city, an hour and a half away, but we are separated by a greater distance now. It is h ard for he and is family to live with what is happening and being not so close anymore. I guess I miss the physical closeness my husband and I shared, but am grateful for each day we wake up, together and he can still remember who I am.

    - Pam

  • December 12, 2009 2:25 a.m.

    I wrote to Effie and Brenda below but forgot my name. (NOT on purpose...sorry, all.) I wish you all the best on your hard journeys as you go through this horrible disease. I hope you have all the help and support you need!

    - Sharon

  • December 12, 2009 2:20 a.m.

    Effie, the difference between someone with Alzheimer's and another person who forgets is that the person without will remember the embarrassing incident (your daughter's name) but the Alzheimer's victim will not. You may want to look at your nutrition or go to the doctor. No need to be embarrassed...get the help. Brenda, you may want to check the laws in your area if you suspect your father is being drugged for the wrong reasons. That is restraint and may be abuse. I wrote about my sadness and experience as my mother's disease progressed. We lost her in 2004. http://www.associatedcontent.com/article/2040865/diagnosisalzheimers.html?cat=72 (copy and paste into search to read)

    - No name given

  • November 30, 2009 2:24 a.m.

    I am so confused right now. My Dad is in the final stages of Alzheimers. He is in an Alzheimer's Special Care Facility. 2 weeks ago his condition had deteriorated so drastically that I took him to a doctor (ther than the one who sees him there). He was extremely dehydrated, mal=nourished (lost 19 pounds), and could not speak. He was so medicated he could hardly hold his head up. He had pressure sores all over his body. After 9 days in the hospital, he was talking better, laughing, sitting up, better color, and had gained some weight. For the first two days back he was great! Playing ball, smiling, eating. Then when I got there on Thanksgiving he was near comatose. Could barely sit and leaning over to one side in his wheelchair. Unresponsive....obviously drugged! Was experiencing choking again when we tried to feed him....too sleepy to swallow. After 4 days he still can't sit up straight...still seems drugged and can barely eat. My questions brought answers that the the doctor's office (the one who comes to visit him) had made an error and doubled his dosage of Seroquil. I am now terrified that he will never get back to where he was prior to that. Do these places drug these poor people because they are too difficult to deal with????? I am sooo angry right now!!!

    - Brenda

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