Alzheimer's disease

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• August 31, 2011 12:47 p.m.

  This blog is so helpful to those who are caring for loved ones with memory loss. My mother took care of my father for many years with his experience of progressive loss of his memory before anyone really talked about it. She would have greatly benefitted from sharing and learning on a platform like this. I am working with CerefolinNAC, in addition to taking it myself – being that I have a family history. With a diet targeting foods rich in folate may benefit those with Early Memory Loss, CerefolinNAC contains the active form, L-methylfolate for nutritional management. Ask a doctor and read more about it.

  - Amalie

• August 30, 2011 8:58 p.m.

  My sister has not been diagnosed yet but based on everything I have read about AD, I believe she has it. I know I need to wait until she is officially diagnosed but I want to do everything I can to help her. She is only 62 and I am 54. She has been a rock for me over the years and I want to do whatever I can. There is no doubt in my mind that she has AD and I believe that she also thinks this. I understand that there is no cure but medication that can help control some symptoms. I mostly want to know how I should behave so I don't upset her. I have to have surgery shortly and I want to ask her for help so she still feels I need her...she is still capable of helping in this regard...but I don't want to exacerbate her problems. Is this a bad idea?

  - Michelle

• July 28, 2011 7:39 p.m.

  I believe my mother has AD. She has all they listed symptoms. She has also stored her fecal matter in a bag in the pantry and smeared it in the wall. I have heard this is not uncommon. Has anyone else experienced a similiar symptom? Is is typical of AD?

  - Kathy

• June 25, 2011 9:49 p.m.

  I just found this blog today and wanted to share what has been a "lifeboat" for me and my sanity. My husband has bi-polar, panic disorder, paranoia, and schizoaffective disorder. My son has autistic traits, bi-polar, and an IQ of about 60. How have I survived? By the Word of God. I have memorized "key" verses that speak to my situation. For example, when I am deeply troubled (which is often) I remember Isaiah 26:3 "Thou wilt keep him in perfect peace WHOSE MIND IS STAYED ON THEE." I listen to gospel radio and the excellent teaching which help me to "set my affection above, and not on the earth." (Col.3:2) There IS power in Scripture and I am living proof of that fact. Oh, by the way, our last child died in childbirth and that was our lowest valley. But Psalm 91:1 tells me that "He who dwelleth in the SECRET PLACE of the most High SHALL ABIDE under the shadow of the Almighty." You see, I have been "abiding" as I memorized these words from my loving Lord. Hope this helps someone out there.

  - JM

• June 25, 2011 4:23 p.m.

  I am 66 years old and my husband is 67. He has Asperger's Syndrome, is a lifetime smoker and drank for several years. He has black lung, having worked a long time in the coal mines. His ability to carry on a conversation is becoming more and more difficult and I am definitely concerned with Alzheimer's. I would like to pass along something that works for me. I set him up on a wi-fi connection in the basement and he is now able to post comments and news articles on Facebook, etc. This requires him to use his brain and he can also "connect" with people where social functions are impossible. Hope this helps anyone with the isolation of this awful condition.

  - Jeanne

• June 18, 2011 8:46 p.m.

  I am a 64 year old woman and my husband has had alzheimers for 5 years since he was 61. I'm pretty sure it is genetic since his mom got it at the same age. I estimate that he is in high end of stage 5, not yet in stage 6. It was hard for him in the beginning because he knew what the disease was going to do to e is him. This disease takes everything away from you. He can't even enjoy hjs grandkids and have conversations with people because he can't get the words out.

  - Judy

• June 16, 2011 10:44 a.m.

  I found this website a few months ago! I am so sad that there are so many of us just trying to do our best and feeling lost, but you all are helping me. My situation is a little bit different. I am the caregiver for my 53 year old brother who is bi-polar and now has both Alzheimers and MS; (it took me a long time to face the fact and seek medical help when I finally admitted his problems were more than psychiatric) All this after getting myself back to a new self after the death of my 18 year old daughter. Now I am once again recreating myself, learning to be patient. When my bro does or says something that makes me shake my head I take a deep breath and give him a big hug when my first thought is to kick him in the ass. We are in Canada and there are no long-term (or short-term)facilities for younger people - only seniors. At least the neurologist says my brother is "passive". I work full time, I put his meds in little zip locked baggies with the day of the week on it and a big sun on the packages for a.m. meds and a big moon and stars on the packages for p.m. meds. This only works if he can figure out what day it is and whether it is morning or night - if I get home from work early; I can't convince him it is night when he thinks it is morning even if he is looking out the window. And one more thing, he just called me (some days he can dial a phone) to tell me he accidentally took his dog's meds. Better not bite me or lift his leg when I get home!

  - Kathryn

• June 1, 2011 9:10 a.m.

  Hi . I'm 56. My dad developed alzheimers in his late 60's. He drank heavily for most of his life. I don't know if that's a contributor. Anyway. I'm worried about developing it. Sometimes I forget things or make silly mistakes.. It's one of my worse fears.. Is there any where that I can go to see what the signs and symptoms are. Thanks for your time

  - Susan

• May 30, 2011 1:23 p.m.

  Great information - wodnerfully explained & easy to read!

  - Julie ann

• May 26, 2011 9:58 p.m.

  Barb, your story is very touching. My grandmother had Dementia and my grandfather had Parkinson's disease and we experienced the long goodbye. I now direct a Adult Day Program and see this disease shatter families and steal their loved ones away from them. Many enter our day program in the mild stage and then over time they decline so fast. Others it takes years to see some decline. I hope your experience at your day program was valuable.

  - Jarod

• May 4, 2011 8:50 p.m.

  My husband of forty years passed away a year ago from this horrible disease..He had the disease for 10 years. I cared for him up until the very end..I couldn't bare to put him in a nursing home..he lost his ability to communicate and I was the only person he trusted...He went to daycare five days a week and I went to a support group....I was sixty years old when this began and on my 70th birthday I couldn't believe how old I was. This illness was an absolute hell for me and for my husband..heartbreaking, absolutely heartbreaking..fear and sadness were the two emotions I felt on a daily basis..I don't believe I will ever get over this...it was very traumatic and jarred my very soul..I am at peace however, because I did everything possible to give my husband love and the very best care....I would do it the same way..no regrets and in spite of everything words cannot express how much I miss my husband...I missed him for a long time and my loss is only intensified since his passing.... He really became my child and I was honored to care for him!

  - Barbara

• May 2, 2011 8:30 p.m.

  Some say go to support group but all meetings held in nursing homes which depresses my husband so he won't go. We married 7 yrs ago. He only worked about 2 yrs before his symptoms were so bad he was let go. I do not plan to be his caretaker after he can no longer care for himself. I see that as his children's responsibility. I am only 62 but was forced to retire to care for him.

  - Renee

• May 2, 2011 6:13 p.m.

  Thank you so much for your words of encouragement. At times I feel like no one understands where I'm at in all this. Today did bring new challenges. My mother wants to come back to her hometown where I live.(it is about three hours away from where she lives now) She started to pack her car and I just happened to call to stop her. It's soo frustrating and hard for me to deal with. I'm not there so I'm so glad that my step dad is there for her. He is so sweet and positive but I'm sure he gets frustrated also. He reamins positive and so do I. I just wanted to say thank you again and this blog really helps me just "get it out" so I can remain mentally healthy. I pray for each of you and all of your loved ones. Much love to you all..

  - Daphne

• May 1, 2011 12:19 a.m.

  In reading many of your posts, I must speak up and tell you caregivers to get busy and join a support group. This is the best thing that you can do to relieve yourself of your guilt or misinformation. This was the best early decision that I made in caring for my wife for over ten years. My support group was tremendously knowledgeable and took more time than doctors to help explain what to expect and how to deal with problems that would arise. Search for a compatible support group and listen to all of the stories. The advice was very meaningful. Also, don't kid yourself about Alzheimer's disease. It is a progressive disease and the best that current medication can do is slow the process down. Enjoy each day for what it gives you because tomorrow most likely will bring new challenges. Control your emotions as best you can. The patient isn't doing things to make your life harder on purpose so don't allow yourself to get mad at them. It is the disease. You will only make matters worse if your argue or get frustrated outwardly. Don't be a hero! Ask and receive help. Your health is crucial as you are the last line of defense before a care facility. Your key responsibility is their health and safety. Don't compromise either of these or you aren't doing your job. Maintain life as close to how you had it before for as long as you can. Continue to go to church, trips, cruises, visits, out to dinner, etc. for as long as you can. Maintain your faith in God!!

  - Donald

• April 30, 2011 2:05 a.m.

  cont. of posting below. I am 43 and have fibryomyalgia, strange neurological problems, and arrythemia that different specialists cannot figure out. I have spacey feelings in my head as if I'm about to pass out but I don't pass out. I have had problems with my speech...stuttering on words or my sentence comes out with the 1st & last word switching places. I feel as if I'm having what is discribed as a mini stroke...but drs cant seem to figure it out. Since my dad started having early memory loss at 52 I am concerned for all of us in my family since the memory loss is irreversible and it took 11 years for drs to finally diagnosis my dad at 63. Could he have been at a better place now memory wise had he started medications much earlier. We will never know that. Should all of our family be genetically tested? What are the adverse affects of the medications? and if it's say kidney damage...which is worse...loosing your mind or dialysis?! I'd take the dialysis! It breaks my heart to see my dad who was such a confident man "the leader of the pack" of all his friends now be withdrawn from all of them. He follows my mom around the house or just sits in a chair staring out the window for hours. I want to be pro-active with my dads care and mine. Because my drs have not found a definitive answer to my physical ailments they tell me it's "stress". I quit my job 9mos ago and do things I enjoy but my symptoms have not changed. Very frustrated! And praying for our fa

  - steph

• April 30, 2011 1:37 a.m.

  My dad retired at 52 yrs of age because HE was noticing memory problems. We had no idea but within 2 years our family and his friends were also very aware. My mom has been taking him to local drs. (who were older than my dad) who would tell my mom that he is fine! That we all start to have forgetful moments and it's a natural part of aging. This went on for several years and his memory loss, repetativeness, and withdrawal from everything he loved to do brought him to be angry. Then the drs precribed anti-depressants for him saying that was the problem. My mom went into the dr crying on many occassions and felt terrible having to explain to drs infront of my dad all the symptoms he's been displaying. Again this went on for years. My dad was angry that he was having to go to another dr...even though he knew himself he probably had alzheimers. He could recall stories in great detail but send him to the car to get 2 things and he'd return with 1 or nothing. My mom got finally got him in to a specialist who did an MRI & cognitive testing and said my dad was fine. Not Alzheimers. Last year at 63 he was FINALLY diagnosed with "Memory loss" & possible Alzheimers amd put on medication. This has been so extremely depressing for all of our family, especially my mom who has been trying to get ahead of the disease and stop it's progression but could not get the diagnosis! His medication has not seemed to help. We are all extremely worried and sad.

  - steph

• April 26, 2011 6:41 p.m.

  My mother is 61 years old and was diagnosed with this horrible disease just two weeks ago. I don't like in the same city as she, so it's that much harder. She married my step father 12 years ago and moved 3 hrs away. I'm holding on to my faith that she will be healed soon, but I wish there was more that I can do for her. She was misdiagnosed two years old by a doctor stating that she had Ischemic White Matter disease when it was really this demon. She grew sick in those two years by taking different patches. She has lost almost 20 pounds as a result. She only weighted 115 to begin with. I'm so angry that this has happened and that she can barely remember my conversation from the night before. I'm faithful. I really am, but I'm scared. I talk to her often (on average 10 a day until time for bed). I'm scared to go on a small trip with my husband for a couple of days just in case she needs me. Can someone help me with this? I feel guilty that I'm not near her and she needs me to be there, but I can't afford to leave work to stay with her. I love my mom. she is really my best friend. What else can I do to help her husband?? I'm so scared!!

  - Daphne

• April 26, 2011 12:32 a.m.

  My father was admitted to the hospital and died one month after that. He seemed to understand what you were saying but got to where he couldn't speak after a couple of days. Was it medicine that made him not speak? Could he hear us and just couldn't communicate. They said his kidneys were failing. He couldn't control bathroom functions. He just layed there. He was awake and would fold his hands like he was praying to take him. He couldn't hold his eating utensils. Would eat grapes by himself. I am so afraid that we let him suffer and he was trying to tell us something but couldn't. I keep replaying this and wanted to do more.

  - Debra

• April 21, 2011 5:53 p.m.

  I am the only caregiver for my mother in-law, I deal with anger, sadness, grief, despair. I only know my mother in-law for five years before onset of Alzheimer. How do I work through these feelings? I read everything I can about the disease but still feel at lost. Any help would be truly accept.

  - Carmen

• April 20, 2011 8:59 a.m.

  I don't know anyone with Alzheimer's. I feel very sorry for the families that have to go through this. I have written a book to help families capture special moments and record history before it is too late. This information could be helpful to these poor families. Please check out my website before deleting this message. Digitallegacybook.com Thank you!I realize I am breach

  - Paul

• April 8, 2011 8:46 a.m.

  My husband was diagnosed with Alzheimer's in Dec. 09, at the age of 60. We both retired in 2007, I was 51 and he was 57 years of age. I began to notice small things and it wasn't long I knew we had a problem. He did have a para-thyroid issue but after that was corrected his cognitive thinking was still messed up. He has forgotten how to sign his name and is easily confused. He still knows me and he is such a gentle man I can't imagine him becoming violent. I thought maybe he had some kind of percussion injury from his year of service in Vietnam firing a 155 howitzer, like the football players are experiencing but he is not violent. That seems to be present in all the players with that injury. The neurologist didn't think it would be progressive if it was from percussion injury. I haven't joined a support group because our community is too small for a early onset group. Stay strong!

  - Shelley

• April 7, 2011 10:24 a.m.

  I have been in the field of gerontology for many years. As a retirement community director, I used to get very upset to see a large family not work together to help their elderly loved one. I noted that when my resident developed Alzheimers, the family seemed to flee like rats from a sinking ship. It is as though the person has the plague. My mother deveolpoed early onset A.D & to my fury, my own family has now done this leaving my sister & I to do everything for our mother. I am beside myself with anger.

  - Sherrie

• April 6, 2011 12:01 p.m.

  Would like to know if anyone's neurologist has suggested a brain shunt for treatment of Alzeimer's. The falling, urgent urination and dementia also fall into the relm of normal pressure hydrocephalus (NPH). From comments looks like some people could be helped by a shunt.

  - Barbara

• March 26, 2011 2:36 p.m.

  We are a team of Boston University students working on developing a new product designed to be used by senior citizens, especially those suffering from Alzheimer's. We have created a survey that will help us with product design, pricing, and demand forecasts. We would greatly appreciate any responses - it should not take more than 15 minutes of your time. Thank you. This is the link for the survey: http://atrial.qualtrics.com/SE/?SID=SV_aXYiSnsuWJcFqgQ

  - BU Students

• March 23, 2011 12:01 p.m.

  I have alzheimers and I want to know how and why I got this disease. Please help me asap because I'm dying from it!!!!!

  - Koko