Alzheimer's disease

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• May 3, 2012 9:28 a.m.

  My wife developed frontal lobe dementia serveral years after she had a car accident when she had a double concusion. Three years before that she had a mild stroke which she had fully recovered from. During the years upto where she was diagnosed with demenetia she had numerous car accidents and uncontrollable spending. Her major mood is constant talking, repeating words, mostly in a happy mood where she contantly vocally describes what she is doing. She is unable to complete complicated tasks. But her memory is fine, both short term and long term (better than mine). Her other mood is where she appears to be mad at everything, she doesn't say anything and may glare or look away from people. The doctor first diagnosted her as bi-polar (which I think is more descriptive of her behavior, since her memory is mostly unafected). The really odd thing is that when she reclines in bed or a chair, she becomes "normal". But the instant she gets up she reverts to the happy jabber mood.

  - James

• April 2, 2012 9:34 a.m.

  My husband has been diagnosed recently with FTD. He had been losing his short term memory for at least the last five years. But last May we went on a trip to Europe. Thats when i realized that things were not right with him. he was totally confused about where we were. he didnt know where we were and was not too interested in going places. he wanted to go back to the room and sleep. he was tired most of the time.We did manage to go to the places planned and I didnt let him out of sight. He is still able to take care of himself and drive to close by places. He was a University Professor of Psychology and is the author of four books. His excuse if not able to do something is that he is still tired from having worked on his last book and if he doesnt remember the news he just heard is because he is thinking about how to market his book etc. He has Primary progressive Aphasia. He is not able to communicate well. He is able to communicate better in his mother tongue but he has great difficulty speaking in English. He has not shown any inapprpriate behaviours. He is loving and still enjoys the funny shows on TV. I hope that he does not change his behavior at all. Keeping my fingers crossed.

  - Asifa

• March 17, 2012 11:47 a.m.

  My husband presented me with papers yesterday that he pulled off online regarding a no fault divorce. He has not been fully diagnosed, but after 31 years of marriage the last 7 have been hell for me. He started having serious memory loss at the age of 54, then became verbally abusive and kept telling me he wanted to die. I did everything I could to get him help. He started playing golf daily, and did not work. He started writing suicide letters, or would leave the house saying he was going to drive off the mountain. He called everyone who didn't agree with him an idiot, began ranting and raving about every thing imaginable. I was embarrassed when out with friends. He kept getting speeding tickets. One minute he was laughing hysterically watching TV, and the next minute was sullen and moody. We had to go bankrupt from his outlandish spending on kooky ideas and blamed me for not being supportive of his every whim. Now he is thinking I am the cause of his problems, when clearly something is very wrong. I had him hospitalized two years ago when he had written a suicide letter and later was found passed out in the bathroom. I dont know what to do, as he wont go to a doctor and blames me for betraying him when I tried to get him forced into treatment. He has hated me everyday since then and is very mean. I don't know what to do.

  - Pam

• March 12, 2012 10:30 a.m.

  It is heartening to read I am not alone. Night terrors/hallucinations are very scary. Neurologist MD seems to.... well.. I feel a lot more in charge than she does. Perhaps telling the patient he is just fine is o.k. and then not seeing him for months is also o.k., but I DON'T THINK SO! Parkinsons dementia, LewyBody and any other dementia wind up in the same unfortunate seeming game of chance. Notice that the posts are largely by women. Bless ALL OF US

  - Ramona

• February 23, 2012 3:38 p.m.

  My husband passed away in Dec. 2011 following a diagnosis of FTD/Pick Disease. I found it strange however, that after his death i got copies of his medical records and there was no mention of Pick's Disease. We were told he had Alz for a long time but I knew this was different. He had no family history of FTD or Alz but had two head injuries in his 20's. His downward spiral happened quickly and no doctors in the hospital seemed to know how to treat him. One doctor consulted with Dr. Bruce Miller at UCSF (University of CA, San Francisco) who has a research center and does much research on FTD and Pick's disease. As a result of that consult my husband was taken off Aricept and Namenda which were likely making his symptoms worse and put on new meds for anxiety. Because mistakes were made in evaluating his symptoms and the wrong information given to the area nursing homes they were unwilling to accept him. We were also denied Hospice by the hospitalist on duty. He said my husband would be up walking and talking soon. My husband passed away 3 days after leaving this hospital. Another doctor signed for hospice the day we left the hospital. Hospice took wonderful care of him and of all our family as did the assisted living facility that gladly accepted him. It was clear that no one knew what to do and it was referred to by one doctor as "the kind of dementia that on one wants to talk about." So it's time that they all start talking about it.

  - June

• February 14, 2012 7:32 p.m.

  My husband was diagnosed with vascular dementia on May 9th. The day after our 40th wedding anniversary.I have noticed bits and pieces of him disappearing for years. A number of years ago he was hospitalized with a "mental illness" episode. They said it was PTS, but he would not take meds for his aggression. I live with two different people in the same body. I suffer embarrassment and shame when his behavior is inappropriate with young women. He is getting physically aggressive with me. His driving is a great cause for concern. He goes 15mph, 60mph all in the same mile. He drives out the entrances of parking lots with traffic opposing him. He is hostile and very easily aggitated. He hardly ever bathes or grooms himself. He exhibits great resentment if I recount his symptoms to his doctor. My husband had a major heart attack two years ago, he has had a stroke and many, many TIA's, in addition he has several aneurysms. One is stented the rest are being observed. I have become his enemy in his mind. He gets aggitated with our grandchildren's activity levels. This is very difficult for me as I love children. I had to leave my full time job teaching preschool when he got sick. He is often rude to people in social situations. I feel like I am "on guard" all the time. He has COPD and emphysema and Sleep Apnea. He barely uses the CPap machine. He sits for hours in a state of lethargy. I have to yell to get him to get up and move. It is as if I no longer have a husb

  - Kackly

• January 26, 2012 12:31 a.m.

  My mom , age 68, was initially diagnosed with Alzheimer's about 4 years ago, but was found to in fact have FTD less than 2 years ago. Much of her short term memory is going and her mood swings have become violent. Dad, her caregiver, recently made a decision to have her enter a full- time care facility and is in the process of doing that now. I support his decision since his own health is at risk now. I've been reading other stories in here of what each of you are struggling with, including care struggles, money issues, and depression. My thoughts and prayers go out to each of you (as well as to the Domenici family). Keep your chins up and know that you are never alone.

  - Carl

• January 23, 2012 5:55 p.m.

  January 22, 2012 6:23pm My husband suffered a TBI injury in 2007. He never recovered and I have taken on the role of a caregiver, I am fortunate and am still able to work. Initially his mood and behavior wasn't affected, as time went on he became verbally abusive, and has no tolerance at all with children. He is unable to tolerate social situations and I am a nervous reck to take him out in public because he will shout obsenities to people he may or may not recognize. Family does not visit, I am becoming fatigued and have found that his physican lacks concern. Medications were prescribed and made it worse. I have found mental stimulation is more benificial. However there are no local resources directed to TBI. Initially his short term was effected, however, now he is loosing long term memory. We seem to have one good day and then a bad day. I am thankful for the good days, but honestly, I pray alot and like everyone else, take one day at a time.

  - Christi

• September 29, 2011 2:25 p.m.

  Hi- My heart goes out to you! I just had an episode with my mom last night - we've taken my parents in- she got up and wondered who the man was in her bed and she wasn't going to sleep with him. She said she questioned who he was when he went in the room, and he laughted at her. That's what set her off. She was on the way to the door, calling my name while I was coming down my stairs from the upper level- she said she might have gone out the door. She has dementia. We sat and talked, she called my sisters. I took out family pictures to "bring her back, and after about 1.5 hours, we were talking about how sometimes men have "issues" and how they are often times "Insecure" with themselves so that's why they need to laugh at what we say - when they don't understand us,or are insensitive without realizing it. It helped her.My situation last night is totally different from yours, but I'm wondering if you show him pictures - would it bring back any good memories of family or the 2 of you- or even of just himself- leave yourself out of the picture at first, especially if he's not even realizing you are his wife (and a wonderful one I'm sure he'd say if he knew what he was doing!)If he can get onto another track in his brain, you could be alleviated for a time? I guess it's worth a try-just remember how special you are, get respite from people to come in and help, and to give you breaks- you really need to take good care of yourself right now!! I'll keep yo

  - Mary

• September 22, 2011 11:01 a.m.

  My husband is in the early stages of alheizmers. He is a heart failure patient, is a type 2 diabetic and has blockages in the back of his head and in his left leg below the knee. I can't trust him to drive or to be alone in the house. He gets angry easy and has been shop lifting whenever we go anywhere. I can't turn my back for a second. it is very hard and frustrating as I see my wonderful husband deterioting and it is breaking my heart. I have been a caregiver before for my Mother, who has sinced passed away,but this is much worse. I struggle everyday to keep control of my feelings and to still have some time for myself. I don't know what I am going to do. He does call me names and threatens to leave me on occasions. He says I am a b----. On well. anybody have a suggestion. There are a lot of other things he is supposed to be doing but refuses to do. Help

  - Helena

• September 8, 2011 9:05 p.m.

  I would appreciate more information on symptons of frontotemporal dememtia. My husband had several small strokes within the last 15 years and one caused him to loose the use of his right side, speech and mobility for several months. He lacks emotion and doesn't always think of safety when working with electrical tools.. I've learned how to speak without harsh words but sometimes his anger surfaces to the point that I can't reason with him....anyone out there with the same situation...thanks

  - Lee

• August 24, 2011 3:46 p.m.

  I lost both parents to different forms of dementia -- mother's was diagnosed as FTD, daddy's never actually diagnosed, but it was dementia. They were living in a big city, in their own home, my father was driving (he had a routine so he could find his way home), carried a lot of cash with him. My husband and I finally had to move them to where we lived, about 60 miles away, and put them in assisted living. Daddy could no longer take care of my mother and she was never getting out of bed, very poor hygiene, not eating right and had Type 2 diabetes that was getting out of hand. It was when we moved them that we discovered daddy was actually worse than my mother. She was very passive. He became extremely aggressive, cursing, paranoid -- the classic symptoms. He wouldn't listen to me at all, but he would do what my husband asked him to do. My father was a brilliant man, college educated, career military officer. His behavior was completely out of character. As I was preparing to move them to a memory care facility, my father got sick and died. Three weeks later my mother died. I felt as though my life had been taken over. It was two years of living hell, but I miss them very much. They died in early 2007, so it's been four years. I think I know what I will face when I get older and my husband and I have already warned our sons (husband's mother died of Alzheimer's). As a family member, you're never prepared for what you will face.

  - Anne

• July 29, 2011 8:32 a.m.

  51 yr old male with Early onset Dimentia. I have tried to turn everything into a habit so nothing involves short-term memory. Drive a new car so I can remember everything in it before I lose it all. Live in a simple apartment, again to form habits or daily rituals. But I can't focus on anything, or remember why I'm opening a cupboard, etc. How quickly will this progress? This has affected everyone in my father's family, and he died of Pneumonia resulting from Dimentia. Anyone else?

  - Michael

• June 26, 2011 8:30 a.m.

  My husband is currently in hospital with problems relating to FTD. He is 64 and had been displaying odd behaviour for over 20 years. He was just too laid back. couldn't focus on things and in general just gave the impression that we had the problem not him. He was diagnosed incorrectly with Alzheimers in 2006 and has now had a relapse resulting in a huge downward spiral. I've cried for the last two weeks and now feel numb. I've lost the love of my life and now that he's in care I will have to find a job at age 61. I lose my pension in about 5 weeks so the job I had to give up to care for him would have been my last job as I thought I'd be there till retirement age. This illness has destroyed the love and affection he had for me and when he sees me now all he does is swear and scream at me. I don't think anyone who hasn't gone through his could ever understand that kind of heartbreak. I still don't know when this nightmare will end. God help me please!

  - Ann

• May 5, 2011 6:50 p.m.

  My father was a heavy binge drinker for many years. That increased. At72 he started having mini-strokes.He moved 2000 miles from any family.He had poor judgment and told neighbors and such about financial matters and his savings, etc. He was also sexually inappropriate with all ages and sexes. By 74 he developed negative gram spinal menengitis while living alone and was found unconscious after two days on the floor "cooking" in an electric blanket. He was in a critical condition and completely paralyzed for weeks except for ocassional cursing at the top of his voice! He was not expected to live. He did ! And for FOUR more years - but in a nursing facility. After 18 mos he was finally able to walk (rather unbalanced),talk, continued to drink and smoke when he could do it, and paranoid to the point he believed even the nurses were "out to get him". We found an open 7" jackknfe hidden in the closet. Also found over $250 hidden altho he claimed he was always broke. Whe confronted he was physically violent towards family members, nurses and even his doctor. He was diagnosed by three differeent physicians as DEMENTED, but we could never decide if Alzheimers was part of it...or mostly alchohol damage and strokes. I will forever regret NOT insisting on an autopsy after he died to determine what his brain disease was. He had an enormous will to live or would have never survived that long.

  - PAM *

• May 4, 2011 6:55 p.m.

  there isn't much out there about FTD. My husband my first diagnosed as having alzheimers (4 months after my mother died who had Alzheimers). however I was not convinced it was alzheimers due to how my husband was progressing. It robs me of my husband piece by piece, is there not more information out there to share.

  - kathy

• May 3, 2011 9:28 a.m.

  I know the frustration of living/caring for my husband who had Picks Disease. There is so much information out there about Alzheimers but very little about the other Dementias.We're told the end result is the same but in the early stages, in younger people, we need more information, more guidelines for care. Families are destroyed by these diseases because, only if you are in every day contact with these patients do you observe the subtle changes. Outsiders do begin to think there's something "wrong" with you. My husband passed away after 10 years and finally the family believed me when I said "something is wrong".

  - Carol

• May 3, 2011 8:43 a.m.

  Dear Rosa My husband, age 59, was deteriorating for about five years. Looking back I wish I had realized what was going on. He suffered a severe head injury years ago and there is also a family history of dementia. At the beginning the signs and symptoms were so subtle I thought perhaps it was a bit of a mid-life crisis. Then there were problems with remembering appointments, etc., but he is very intelligent and was able to cover up many of his lapses. He left me suddenly, just as your husband did, without any warning, telling me I was abusive. Now it has become a marital issue and there is nothing I can do to help him. This past year has been a nightmare and he is still undiagnosed. He has broken our family, hurt his children and has destroyed our finances. He is now constantly forgetting and cannot manage his money, but tells the children he is destitute because of me. Doctors need to be more aware and listen to spouses. It would have helped if we had the same doctor. My heart goes out to you Rosa. There seems to be nothing we can do at this point. I will keep you in my prayers. Has anyone else had a similar experience or have any suggestions?

  - Diane

• April 7, 2011 6:51 p.m.

  My mother has FTD and was properly diagnosed in July 2009. FTD is rare and has its own sets of challenges. When I look back over the past 5-6 years there were signs of the dementia, even though Mom did not live with me. Mom' FTD started around the age of 63-64. That's probably the worst part of this disease is the young ages. I started a new blog just today for hope, laughter, courage, and gratitude. For all those who wish to follow: dementiacaregiversunite.blogspot.com. I will be adding postings at least every other day. Please share this blog. My hope is that it gets us all through another day, week, month, etc.. with gratitude and courage! Remember, we are not alone!

  - Jackie

• April 2, 2011 3:14 p.m.

  Is there any treatment for FTD? Husband may be so affected.Inverted nasal polyps-whole life. Multiple minor and major surgeries-about 60 years- Major removal of built up necrotic material in left frontal sinus about 5 years ago found that material penetrated soft bone tissue and abutted left frontal lobe. Can this have caused thisdementia? Personal Hygiene horrific-complains that something is wrong with his head; says it feels crazy. He's otherwise a healthy 93 year old with benign prostate enlargement. Thank you for any and all help you may be able to give me.

  - Elizabeth

• March 24, 2011 2:22 p.m.

  Hi , my mom probably started with memory problems /social problems 20 years ago . She is now 91. In looking back , I remember that she became very unorganized in keeping on top of her bills, became very self conscious about going out with friends saying she wasn't dressed "right" when in fact, I believe she felt she could not communicate intelligently any more. Communicating and socializing had never been problems before. She became more and more reclusive, except for family and 1 or 2 friends. About that time she was diagnosed with dementia , possible Alzheimers . My sister moved back into to town to take care of mom more and after mom fell down the steps, mom moved into apt next to her ( about 8 years ago) . Mom has become more and more dependent on amy (my sister) over the years. In the last 3 years , mom has become more and more innappropriate in remarks, making sexual comments about family and strangers when around them. She is extremely repetitive in her speech and very childish. About a year ago , she was diagnosed with frontotemporal dementia. She was put on seroquel to help control such behavior. My sister is needing more and more breaks from mom as she has been living in same house as amy for about 4 years.It is very improtant that the primary caregiver gets help and "mini-vacations" . Just taking mom for 1 day - 5 days give amy the refreshment she needs

  - greg

• March 11, 2011 6:44 p.m.

  My husband has FTD .. he was first diagnosed with Alzheimers. However, in the 3 years since diagnosis it's mainly his speech and inability to communicate that is most impacted. It's so painful to lose someone you love piece, by piece

  - Kathy

• March 2, 2011 11:47 p.m.

  Hi! I need help! My mom is 64 and acting crazy! It started 10yrs ago. She would repeat herself (ex: daily calling and telling my brothers and her friends to tell them that I was pregnant; when in fact, they knew, and I was in my third trimester..it was old news) She started demonstrating socially innapropriate behaviors, eating uncontrollably. She has no empathy for others, for example, she was at my cousin's funeral. She walked up to my crying aunt and said with a large smile," look at my tan, I was in Jamaca. It was wonderful. She will walk up to strangers and tell personal information. She has word finding difficulty. Her comprehension is dimished. Her judgement is off. We can not leave her alone with our children. The woman who would not let me watch "Jaws", has been found viewing rated "R" movies with her young grandchildren. She calls me and my siblings 5-6 times a day. When I answer the phone I typically get the same "HI Kel" as if we havent spoken for a while even though we may have just spoken an hour ago. We then will go through the same list of questions that I already answered that day. She seems "out of it" then back on. She underwent and MRI and the the results were normal. She also participated in a dementia screening at the Doctors office and passed. I am happy about the results, but what can I do, she has no awareness that she is acting crazy,and is mad at me for asking her to be tsted. She is as

  - Kelly

• January 11, 2011 11:49 a.m.

  I see an increasing number of FTD and Lewy Bodies but the Drs don't seem to understand as much about them as with alzheimers. I continue to try to educate and refer families to web sites so they can make their own informed decisions

  - Teresa

• January 5, 2011 11:10 a.m.

  I've read all of the posts and find them very interesting. There seems to be a common thread in my husband's condition. He was diagnosed with FTD about eight years ago, but about three years ago he had a PET scan and was found to have had a stroke in his right temporal lobe. His disease is not expected to deteriorate as fast as FTD, which was good news. His language skills are good, but he has no self motivation. He lies around and watches TV when he is awake and sleeps about twenty hours per day. He has drunk excessive amounts of diet sodas for about thirty years, and continues to do so. He loves sweets and snacks constantly, even though he is diabetic. He is an impulsive buyer as well, and he loves to watch videos of big breasted women on the Internet, for which I'm constantly blocking. He is 68 years old now, and I hope that he doesn't do what Rosa's husband did. I think that he is too dependent on me to leave me. It's not easy, but going to support group meetings and being educated and informed about dementia really helps me keep my sanity.

  - Janet