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• December 29, 2010 3:27 p.m.

  To Judy: A change in caregiver can trigger a negative response. Its important your mom have the same routine every day. Illness can also bring on worsening dementia.

  - Sharon

• December 23, 2010 8:50 a.m.

  My wife has a form of Alzheimers known as Posterior Cortical Atrophy. It started in the occipital lobe of the brain, with loss of eyesight over several years, and progressed into other lobes with loss of memory. Now that she is in the late stages of alzheimers, she is exibiting much rigidity and is reverting into somewhat of a fetal position. We have curtailed the use of Aricept and Namenda as, the doctors feel them to be of no further value. She is now in a nursing home with Hospice. She is 68 years old.

  - Jack

• December 7, 2010 11:04 a.m.

  I’m a registered nurse hired to take care of two sisters. I have had years of experience in a hospital setting but now really know firsthand what it’s like living with someone suffering with AD! One is 86, the other 91. They both have dementia, but the younger has more advanced Alzheimer’s. They do have great medications on the market that can help but NOT cure dementia. I would only advise this under careful watch of a neurologist. The younger was prescribed Exelon, which is a patch. She had a bad reaction--became extremely agitated and anxious when she was a normally even tempered and generally a happy woman. We discontinued it right away. But, the older of the two had better results with a medication called Aricept. There’s also Namenda and Razadyne. Good luck!

  - Angela

• December 1, 2010 12:01 p.m.

  hfqhut Hmmm. reading all these Comments from all these wonderful and careing people makes me very sad. I notice myself having the same problems as some of these people after suffering a strok. I really don't want to put my family in the same situaton as all I have read about. I do appreciate all they have done out of love for the people they were close to. God bless every one of you. I dont know what is in store for me, but I will do my best if I can to make it easier on them, whomever is designated to be my cargiver. I am 70 years old and crying like a baby writing this.

  - John

• November 21, 2010 4:13 p.m.

  The Posted comments, especially for those for Caregivers are very helpful to me Thank You, all for sharing. I am 79 and my sister whom I care for is 89. I relate to what many have said. Someone mentioned that her /his Doctor suggested Hospice, is this possible if the Alzheimers/Dementia patient is not declared Terminally ill? How were you able to do that?

  - Maria

• November 9, 2010 5:15 p.m.

  I became a caregiver for my mother when she had her first stroke at age 69. She is now 97 with advanced dementia and is in a nursing home. I cherish my visits with her and take it a day at a time. I found it very helpful to read the 36 Hour Day, which explains the various stages of dementia and Alzheimer's. I volunteer at the nursing home a few days per month and truly love being around all of those wonderful people. Best advice I received - go into their world - don't try to bring them into yours.

  - Diana

• November 3, 2010 1:24 p.m.

  My mom had to go into a private board & care home when she was about 87--she's 93 now. She has been losing her sight due to diabetes and has poor balance. Progressively she has had periods of being rather nasty to her caregivers and then perfectly fine the next day. 1 1/2 wks ago she was fine, playing cards with my brother. Then he had to go away for a week. My knee gave out 2 mos. ago & I haven't been able to visit Mom as usual. Mom suddenly didn't want to get out of bed, bathe, dress, eat, etc. She's been combative at times, doesn't open her eyes, sleeps most of the time. She's in the hospital and they're not sure what's wrong. No apparent stroke. They are giving her an MRI and a neurologist has been called in to consult. It's very hard to see her this way. She seems to be wasting away. Can anyone help us understand what's wrong with her? She has a fear of falling and has fallen several times and hit her head. Now she calls out in her sleep for help because she thinks she's falling. If anyone can help, my brother and I would be most appreciative.

  - Judy

• October 29, 2010 1:26 p.m.

  I have worked with all types and Alzheimers, and have seen how truly individual every person is, it's fascinating to me. I really enjoy caring for people particularly Alzheimers because although some cases, which are generally anxiety related issues can be extremely difficult to handle, the people that are at a state where they can communicate, and you can kind of "enter their world" are such a joy to work with. There's something so innocent and genuine that these people portray when they voice their concerns and whatnot, and I get so much enjoyment when I can really figure out what ways to respond to them that will ease their anxiety and even laugh!

  - Maria

• October 27, 2010 2:03 p.m.

  I have been helping take care of my grandfather-in law for about 6 months now. From what I know he is at advanced stages of Alzheimer's/Dementia, diagnosed several years ago. His wife has MS so I help her with things too. 4 years ago when I married into this family I heard about how brilliant this man was and all the things he has done in his life. Now there are only fragments of that man left to rarely surface. I feel particularly compelled to offer them the best care I can as long as I can. Others before I came to help took advantage of the situation making things worse. I struggle with getting Papa to cooperate with me on some of the day to day things. He just doesn't understand why I am removing his clothes to help him shower. I try to talk him through this as best can so he knows what is going on, but most of the time he doesn't understand. I think he may be starting to have issues with incontinence. this makes things more difficult having to clean him more often. Does anyone have similar problems? Does anyone have suggestions on how to coax him into cooperating better?

  - Travis

• October 22, 2010 10:52 p.m.

  what does alz and parkinsons have in common

  - c

• October 22, 2010 9:14 a.m.

  My husband started having difficulty expressing himself about three years ago. Constantly looking for words. Recently I have noticed although he listens to what is said to him he fails to correctly interpret what he is told. As a result he takes offense at what he thinks he hears. He has a very negative attitude towards life in general, has been treated for PTSD in the past (took himself off his meds-he says they give him nightmares) gets angry very easily and becomes verbally abusive to me. He is a diabetic on insulin and lately his "punishment" if he feels I am slighting him (results of the above listed problem) is to refuse to eat!!!! He refuses to admit he has a problem (says he has a slight memory problem!) refuses to discuss his problems with our doctor, comports himself like an angel with outsiders but appears to target me increasingly for his outbursts. He is a stamp collector who can tell you which stamp he is missing in his collection on which he spends most of his awake time but has lost interest in everything else. He can sleep 12 hours a day if I don't wake him. We have no family to rely on, I am 74 years old and at my wits ends. His family has a history of Alzheimers (mother, 3 brothers including a much younger one). Does he have Alzheimers or am I worrying for no reason and he is simply suffering from aging? He is 74.

  - Giny

• October 19, 2010 4:55 p.m.

  thanks for differentiating between Dementia & Alzheimers. my mom is 78 and is displaying signs of Alzheimer's (i think!) and is in total denial. trying to encourage her to discuss benaviors with her physician, but to no avail. is there a way for me and my sister to do some 'careful, loving, gentle' intervention? she lives alone which further increases my concern.

  - Joy

• October 14, 2010 8:44 a.m.

  My father was an excellent physicist and mathematician in his youth. He served as a scientific officer for one of my country's leading research and development institutions for about 8 years. Thereafter and until date, he now serves as an R&D manager for a private firm. This March, he started to exhibit certain symptoms like jumbling numbers,such as, instead of saying 2010 for this year, he would say, 1020. He also exhibited difficulty in reading the clock, severe weight loss, loss of short-term memory, anxiety and depression. We first assumed that this was a malnourishment induced cognitive impairment, so we started to give him a 1000mg Salmon oil tablet, complete multi-vitamin tablet and thiamine (Vitamin B1)-100mg per day, since July. Over these three months, he has shown an improvement, in that, his memory, cognitive and mathematical skills have improved. He still goes to work. We have just obtained his MRI brain scan, which shows that everything is perfectly normal. His EEG test is due this Saturday. His blood tests reveal thromocytopenia and very low HDL levels, but otherwise, everything is normal. Could the cognitive impairment be due to low HDL levels and not pre-Alzheimer's disease? My father shows some signs of dementia, but it is not as bad as it was in March. Any ideas on what this could be? I would be very grateful for any feedback because we are very anxious. Our next appointment with the neurologist is on Saturday. Thank you very much

  - Ingrid

• October 12, 2010 4:03 p.m.

  We are currently dealing w/ a father w/ a classic narcissist personality disorder that we believe is showing early stages of AD (runs in his family). His brain scan hasn't revealed anything yet, but his forgetfulness, bewilderment, etc... are increasing. While his behavior has always been controlling, self-centered & nasty (verbally abusive towards family mainly - w/strangers he's usually an "angel") we are constantly seeing a more illogical & outright MEAN personality emerge. Could this excessive nastiness & paranoia be the AD or is the AD just preventing him from monitoring his true personality?

  - Mara

• October 2, 2010 10:04 a.m.

  Does all forms of dementia result in the person not recognizing their family members?

  - joanne

• September 21, 2010 8:56 p.m.

  Lancey, what an encouragement to all of us. Thank you.

  - Diane

• September 3, 2010 11:00 a.m.

  I don't know how to cope. This is all new.My poor mom.

  - Andrea

• September 2, 2010 2:34 p.m.

  I will try to keep this short. I have read all your painful comments of which I am also experiencing with my loved one. PLEASE KEEP YOUR SENSE OF HUMOR. I have a feeling after reading up on dementia vs. alzheimers here that my dearly loved one is dealing with vascular dementia. My faith and heavy prayers that God absolutely answers for me is all that helps me cope with everything this life may throw my way. God bless you all. Does anyone know if the drug is on the market that halts the Progression of dementia? What is the name of the drug also? I forgot the name (just a little memory humor ;p) It is not a cureall but if it will halt progression in the early stages, that is a miracle in itself! Right?

  - Deborah

• August 30, 2010 6:49 a.m.

  I hear the heartache and frustration in all your postings. My Dad died of dementia. I am pretty sure it was vascular dementia but am too afraid to sit down with his neurologist to look over his records because I dont want to hear bad news. The docter never clarified during his illness what exactly he had. Now I know that sometimes it is just too hard to get an exact diagnosis. VD can be prevented by keeping could heart health and keeping Blood pressure and cholesterol down. So I feel better thinking I have a fighting chance. He was diagnosed around 72 after my mother had been diagnosed with Alzheimers!! She was 77 when diagnosed. It has been a long road with alot of heatache. Like autism I feel the spike in the incidence of Alzheimers and dementia has an environmental componet to it. Something in our environment is turning the switch on! Research is needed. God Bless you all. Keep the faith and know that God is with you every step of the way in your journey. Being a caretaker is tough but I get through by thinking of of the heavy cross I carry as a way to bring me closer to God and my faith. I grew very close to my Dad during his illness. The love and compassion I felt melted away the anger and resentment I had carried in my heart. I cried , I railed against my situation and felt sorry for myself. I had to get over it fast. Love, compassion for yourself and the ones you care for. God Bless you all and love yourself. Your doing a great job...God's work!

  - kat

• August 20, 2010 10:24 p.m.

  I COPE WITH TAKING CARE OF MY 63 YR OLD MOM WITH DEMENTIA (POSSIBLY ALZHEIMERS) BY LOOKING FOR THE POSITIVE THINGS IN LIFE AND BEING THANKFUL FOR THEM. EX; SHE'S HAD AN EVENTFUL LIFE, SHE IS STILL INTELLIGENT IN SOME WAYS, WE ARE BOTH THANKFUL IT'S NOT AS BAD AS OTHER DISEASES...... AND ON AND ON AND ON. LOOKING FOR THE POSITIVE SIDE OF EVERYTHING IN LIFE HAS MADE ME A HAPPY PERSON EVEN THOUGH I'VE EXPERIENCED MANY MANY HARDSHIPS FOR A 27 YEAR OLD. I'VE EVEN HAD TO BURY MY DAGHTER AT 5 DAYS OLD. THEN MY MOTHER BECAME SICK. I THINK MY DAUGHTER'S DEATH WAS A GREAT PREPARATION FOR BEING THE ONLY CARETAKER FOR MY MOTHER. I THINK TAKING CARE OF MY MOM IS A GREAT PREPARATION FOR BEING THE BEST MOTHER AND WIFE THAT I CAN BE. I AM SOMEWHAT THANKFUL BECAUSE THERE ARE SO MANY PEOPLE IN THIS WORLD THAT HAVE WORSE PROBLEMS AND NOT ENOUGH KNOWLEDGE NOR STRENGTH TO DEAL WITH IT ALL. I BELIEVE I HAVE LEARNED A GRAND LIFE LESSON AND HAVE BECOME A MUCH STRONGER AND MORE PATIENT PERSON.

  - LANCEY

• August 12, 2010 9:47 a.m.

  I can see how differentiating between AD and dementia can be confusing. However, simplifying it down in terms of dissociating the two would be unethical, as Alzheimer's disease is in fact Alzheimer's dementia. In truth, Alzheimer's dementia is the most common form of dementia. There is truth that there are several forms of dementia, influenced by a number of factors. However, if we are ever to get to the bottom of the disease and/or its causes, we need to start by not merely making it easy for the layman to understand, but through providing accurate information.

  - Isaac

• August 5, 2010 5:42 a.m.

  My 88 year old father just passed 3 months ago. He was experiencing "sun-downers," which the psychiatrist explained was when the sun started setting, he would become disoriented and paranoid. He thought his hom was unsafe and his family was going to hurt him. I took him to the hospital and they admitted him. He never cam home. They drugged him and all he did was sleep and drool. He tried to eat but he was slowly dying. We almost got to take him home, but he had acquired pneumonia and had to be put on antibiotics. At his age, there was little they could do. So, we admitted him to a nursing home. He stayed for one day! He did not want to be there. He went into respiratory distress and was rushed into the emergency room and re-admitted. They did not treat him well in the emergency room. He was shaking and his eyes were large than dollar coins! I went balistic and asked them to put him on morphine!!! He was dying, it was obvious! They finally listened to me and he was more comfortable. He deserved peace. Morale of the story: Don't let the hospitals and doctors dictate to you and your family! Advocate for your loved one, they cannot speak up for themselves! I had to practically beg the dr. for Hospice!!! That is outrageous. Even the nurses were disgusted with the dr's care. I reported him to the advisory board. A little more compassion please. My daddy had his morphine and his oxygen mask and hisH Hospice. they checked in on him and played beauti

  - Connie

• July 28, 2010 3:53 p.m.

  My father passed away one month ago and his death certificate reads that his cause of death was dementia. Even in caring for him for eight years I was unaware that this could be listed as a cause. My mother has Alzheimers as well and I am fairly certain that she has frontotemporial Alzheimers. As I begin this journey with my mother (Actually I have known for a year now) I am often overwhelmed with the unfairness of this diseise. The caregiver is changed in so many ways. I belong to a wonderful support group that meets once a month and probably would not be as far as I am without them. The reason for my post is merely to see myself among others who are experiencing many of the same things. In other words, to just belong. Becuse when I am with my mother I do not feel we belong anywhere. We seem like our own island because she only wants me involved with her. i pray I do not grow to resent her. I never thought I would go through this twice!

  - Robin

• July 17, 2010 1:00 p.m.

  My husband was diagnosed with Alzhiemers 15 yrs ago but we now realize the diagnosis was wrtongbecause it hasn't progressed. In 97 he was seen at Mayo and had a Pet scan. During our last conference with the team there were 3 distinct opinions. However, I now feel it is frontaltemporal lobe dementia. When I re-read what each lobe does it reads like a profile of Byron. I cannot seem to find an MD or team that will help me monitor and evaluate him. His rages have been controlled with Depakote and that is the only medication he is on. He always had a sense of humor but now, due to his disinhabitions, he is a a sweet stand up comic. He is in PT twice a week to help with parkisnon like symptoms but his gagging is getting worse. A high fiber diet has been very effective controlling his bowels, but he can manage less and less. Eg. he cannot vacuum anymore becuase he burned out the motor on 2 vacuum cleaners by running over things that became stuck. He loves me so much and he feels so bad he can't help me more and he tries so hard. The hardest part is our kids who don't think there is anything wrong with him and that I am exaggerating. I see an excellant counsellor once a month and with her and gardening I manage.

  - susan

• July 15, 2010 10:03 p.m.

  Concerning the last blog--I don't consider the multiplication tables a short-term acquired memory.

  - Elizabeth