Alzheimer's disease

Free

E-Newsletters

Subscribe to receive the latest updates on health topics. About our newsletters

• Housecall
• Alzheimer's caregiving
• Living with cancer

• January 1, 2011 1:40 p.m.

  Verda, can you get to sn Alzheimers Assoc. caregiver support group or meeting. At least you can call their 24 hr. hotline. Six years ago my family insisted I stay with my mother in her Florida home until a day care giver could be found. I objected saying Mom should be in NY state where we all live but nobody backed me up. So I'm here again in Florida alone, my mother now in a nursing home in NY state. Six years ago Mom couldn't communicate well but now I remember the sunset walks and drives in the car which always cheered her. Understanding the disease can help to relate to our loved ones in ways not involving memory or conversation. They are lost but we can help them and can have good times even.

  - kl

• December 30, 2010 11:26 p.m.

  I have been the sole caregiver for my mom who was diagnosed with dementia in 2008. I knew prior to that diagnoses that mom was not mom! I spent the christmas season (2010) with a virtual stranger. She is still my mom is body and voice; however; she is not my mom anymore. We are now facing the year 2011 and I feel hopelessly lost. thank you for listening.

  - Verda

• August 2, 2010 1:20 p.m.

  To RE: Beyond what the Alzheimer's patient must suffer, it is terrible what this disease does to the sufferer's family. In my post below I've outlined the personal costs and loss of family affection I've endured as a result of advocating for my mother. It's taken me 7 years to understand that they simply do not want to deal with it. My mother is easy to be with so I think it's just simple fear of this illness. My one brother and I are speaking a bit now, and my youngest sister, who suffers from mental illness has never had a problem being there for my mother. As for the rest of the siblings they need to keep it and me at arm's length. Once my mother got her diagnosis, sadly, I think she "disappeared" from their mental horizons. I am sorry this disease has also impacted your family to such a degree.

  - No name given

• August 2, 2010 1:20 p.m.

  To RE: Beyond what the Alzheimer's patient must suffer, it is terrible what this disease does to the sufferer's family. In my post below I've outlined the personal costs and loss of family affection I've endured as a result of advocating for my mother. It's taken me 7 years to understand that they simply do not want to deal with it. My mother is easy to be with so I think it's just simple fear of this illness. My one brother and I are speaking a bit now, and my youngest sister, who suffers from mental illness has never had a problem being there for my mother. As for the rest of the siblings they need to keep it and me at arm's length. Once my mother got her diagnosis, sadly, I think she "disappeared" from their mental horizons. I am sorry this disease has also impacted your family to such a degree.

  - No name given

• May 11, 2010 8:08 p.m.

  Since my mother died, and as an only son, we moved our family from TX to CA in 2000. My Dad (now 92) was diagnosed with Dementia by the VA back in 2002. We were not officially told of his medical condition until three months ago when forced. Then things began to fall into place of his different odd behaviors, auto accidents, and lack of fiscal responsibility. Had we been aware and advised earlier, this coaster ride would have been understandable. He is now with 24/7 assistance to maintain his health, safety, and welfare. Checking on him is easy since we live next door by design. We tried a top-rated Dementia/Alzheimer's facility in the area, but the patient to caregiver ratio was too high for adequate care and supervision. After 10 days, he was brought back home for another round of responsibility. This whole situation has ripped our family apart. Our youngest daughter avoided it all by an early marriage, the oldest one is at home, and still angry & seething, my wife has used a hands off approach, while I handle the details. Our lives consist of more than just care for him. We have been self-employed for 7 years. Everything combined has left us town-bound, frustrated, spent, angry, and upset waiting for God to bring things to a close. It is just a one way path that is being traveled by those with an expected end. There are no real answers why it happened, or magic pills or wand waving to help restore a loved one to who, and what they were earlier in life. It just is that

  - RE

• March 11, 2010 9:48 a.m.

  There's something in every single post that I can relate to. My mother is entering the late stages of Alzheimer's and my current family skirmish is about making Mom's final arrangements. It took 5 years for my many siblings to admit there was a problem, and then 3 years more to get her the 24 hour care she needed (she even had insurance for it). After the battle scars barely endured, I've decided I can't waste my limited energy in cajoling, explaining, arguing or begging them to understand the importance of planning for Mom's impending death. I asked my brother, Mom's executor, if we could calmly work this out in advance to honor our mother for a peaceful end and he simply brushed me off as my sisters did as well. I am trying to control my hurt and disappointment but will proceed with the paperwork with what we know my mother wants. With 20/20 hindsight I wouldn't change anything I've done for Mom. I would say that it's best just to be secure in your decisions and do what's needed for your parent. As many have said, despite the difficulties there are loving rewards. Dodge and ignore the bullets from siblings. It's easy to say now but try not to take it personally--a lesson learned after 12 years.

  - KL

• February 5, 2010 4:37 p.m.

  My mother has dementia for the past approx 6 years and has lived with my family for 20 years. Through the years she has helped me raise my family,we feel the onset was linked to death of my 15 year old son with duchenne muscular dystrophy. During these times the amount of stress is more than I'am able to handle. I have 2 sisters who provide no help with care giving and have not given my husband and I a break . The anger and resentment is so that i can"t speak to my sibilings,my husband was told by my sisters that because he made a promise to my father on his death bed that he would take care of our mother that it his duty. I feel so alone my sisters call sometimes once a month my now mother doesn't remeber them. My sister lives 25 miles away when I ask for help like taking for a weekend there is always a problem. I have 2 young pre teen kids and this is unfair to them. dementia and caring for my mother my has forever changed my family.

  - Jo

• December 4, 2009 5:00 p.m.

  My father was diagnosed with FTD about 2 years ago. He was 56. My mother developed "poor me" syndrome and has not grown out of it yet. I have 4 siblings - 3 bro 1 sis. My sis is still living at home and is witness to some of the harsh words my mother says to my father. Since he was the provider for so long I honestly feel she has resentment and is mad that he got sick. I feel awful for my dad b/c he knows what is going on to an extent and feels stupid compared to what he once was. My mother's harsh words and actions do not help his situation. We have confronted my mother several times, and nothing has changed. My brothers choose to ignore the situation. I live 1500 miles away. My sister lives with them and puts up with it on a daily basis. She is 22, and feels trapped b/c she is trying to protect Dad from Mom. The girls and one brother (young ones) are at odds with the two oldest (boys) about how to handle the situation. I have contemplated having Dad move with me, but I think that would be a huge disruption to his life. The obvious answer is for my mother to stop being an abusive b**** and step up, but I think she is suffering a loss that she cannot see past. Our family is at odds, and this disease has destroyed more than my father's brilliant mind.

  - Andrea

• September 30, 2009 Noon

  My 92-year old mom is exhibiting bizarre behavior - claiming that people are taking clippings of our shrubs, removing soil and gravel at night, accusing my husband of going into her apartment and switching out things like doorknobs, her toaster and such. But she is very functional in that she cooks, cleans, takes care of herself and drives to shopping. She is very headstrong and independent and I cannot even broach the subject of going to her doctor without incurring her anger. My husband ends up trying to convince her the these things are not happenend which results in them arguing often and loudly so that neighbors can hear. I am at my wits end to do something about the situation and am being bowled over by the stress of this. Any ideas about how to handle her?

  - Cindy

• August 28, 2009 5:41 p.m.

  My brother died.Doctor's said he died of dementia.He was failing. He looked older than his 83 yrs.yet he was at my house for a family function with my sister-in-law,with no nurse ,caring for himself in his home with his wife(who is 81 and also frail). 8 weeks later after progressively dieteriating he died I don't understand how he can die so quickly.From denentia?

  - Joan

• August 4, 2009 4:30 p.m.

  My mother has dementia, she lives 1500 miles from me, I work full time and will be working full time for the next six to seven years not out of choice but necessity. My younger sister lives close to my mother, she has never worked outside the home her husband just retired, and feels I should come home to take care of Mom since I am the nurse, because she wants to spend time with her retired husband. My older sister is retired also and is able to spend time with my mother. They are so incredibly lucky to be able to spend time with both my parents. I do not like the guilt that is heaped on me daily. My husband and I visit my parents when we can afford to do so, and when our employers allow us the time to do so.

  - name withheld

• July 2, 2009 7:15 p.m.

  I wake up terrified and go to bed scared. I have my elderly mom to take care of, plus a full time job and NO help. She was on Exelon, only 3mgs a day, then the doctor said to up the dose. What a disaster. She is now more confused than ever. Found out she had a uterine track infection, and when she was on the Cipro she was the most lucid I've seen her in YEARS. Co-workers and friends are understanding but I'm still scared all the time. In home help is slow in coming and I don't trust them. I feel so bad, so full of despair!!!

  - Youngest Daughter

• April 17, 2009 5:09 p.m.

  Is Alzheimers the Daughters' Disease? My situation is so similar to what I read here - my sisters and I are trying to help my mother (Diag 1/09), while my brothers are very much less engaged. Of course Mom resents us, has accused each of us of neglect, trying to steal her car, stealing her BP meds, you name it. She cancelled her life insurance because she was convinced the grandaughter named as the benficiary was trying to kill her. She packed up and left the state, only later to recant and say the girl "made a mistake" but Mom can't remember what it was... Instead of frustrating yourselves over your brothers, SISTERS I call out to you now - Know this: You can do something You can do nothing But you cannot compell or force someone else to do either. So love your brothers or whomever else "isn't helping" contact support agencies, and DO what you can. Also I can surprised by the number of people who think that refusing outside help = being an awesome person. If Mom had broken her hip would you fix it? Why do you think you can fix this? Please, allow yourselves to ask for and receive help in dealing with this disease. It's already tearing our family apart.

  - minisaezme

• March 24, 2009 10:25 a.m.

  my uncle has dementia and suffers with heart problems,depression, mood swings. He is a Vietnam vet. he recently was released from the va hospital my me his power of attorney. big mistake!!!! 4 days later he became very angry, aggressive, and told my son & I to get out of his house. he not suppose to drive his meds. consist of morphine, ativin, heart pills (2). he does has hospice's coming in twice a week. he is smoking 2 packs per day. I fear he may burn himself and the house down or hurt someone driving his truck. to

  - sandy

• March 10, 2009 4:06 p.m.

  My mother in law was recently diagnosed with AZ, and after numerous early morning calls due to panic attacks, she was evaluated by a genartologist and gerontologicalical psychiatatrict. Our family placed her in an Assisted Living Center specializing in dementia care upon the advice of these professionals. Now, Mom is insisting on going home to be with her dog and being combative and abusive toward all of us when we try to either distract her or tell her that going home is not going to work. She's laying huge guilt trips on my sister in law, who's own health is not great, but who is considering taking her home with her just to lessen her own guilt. I know that Mom is in a safe, comfortable, good environment and that the best decision was made for her, but she's laid it on thick with the rest of the family and it's causing real damage. Does anyone have any suggestions, particularly when she wants to have her dog with her? ( The dog has been given to a new home and is very happy and doing well)

  - Sara

• March 5, 2009 1:10 p.m.

  Being the only family member in town with my mother who has early to moderate alzheimers is a difficult situation. My mother was diagnosed with memory loss at the age of 62. Denial among family members was the first obstacle. Now I find that I am being accused of not caring properly for my mother. This is not the case. It is so hard when I am here every day and knows what is going on and no one else understands that. Family members do not call me to see how my mother is doing, ever. They are not respecting my position. Now I am afraid that my mother is saying bad things about me to others. I know this is the disease but is still so hurtful especially when others believe this. I have been told by her sister, whom she only see's a few times a year, that I am a bad daughter. I am always here for my mother to help in any way. I would never show anger or disrespect to her in very trying circumstances. It is so unfair the way this disease is tearing my extended family apart. Luckily, I have a very supportive husband, who is my support and see's everything for how it is. If you have a family member with Alzheimers, please respect the person who has the most contact with them. It is such a difficult situation and they need all the support they can get. Not questioning and critisim.

  - No name given

• March 3, 2009 5:27 p.m.

  My father was diagnosed 4 years ago after my mother passed away. I'm the youngest of 3 caring for my father. My sister being the oldest my brother is the middle child. My sister lives out of state and my brother lives 7 miles from my father. I sold my home to move in with my dad with my family of 4. I work 55 hours a week and care for my father the rest of my waken day. My brother works 17 hours a week and never comes around unless he needs money from my dad. How can I get help from him so my family and I can have a break. I have taken care of everything, dodtor visits, financing,medicine & his home. I've taken care of his will with the help of my sister, she lives out of state but she calls all the time. I need my brothers help!!! I ask but he never follows through. Please help. All the support groups meet in the morning I work so I can't make them. I have no one to talk to. Please some one give me some advise. Thank you.

  - daughter who cares

• December 12, 2008 1:46 p.m.

  Judy- my mom was diagnosid with dementia 5yrs ago. I know now that she was having problems much earlier and none of us (5 siblings)knew it. We knew she was acting different but shrugged it off. Mom raised us by herself and still to this day is very independent,stubborn and can be abrasive. She refuses help, which doesn't help with her treatment. I have gotten arguments with family members who think and say I'm trying to take advantage' when I did all the work and pushing for help. My Mother didn't give me the power of attorney so I could make legal decisions even tho I was the one who was always around and checking on her. Dementia it self causes so much confusion with the person who has it that even if everyone gets along it' hard to find solutions. I have experienced having a problems not only with my family but also not having enough knowlege about nursing and rehabs and medicare/medicaid that by the time Mom is 100, I would finish understanding the total picture. Mom is 94. The one thing I know is that everyone in America needs to know how to prepare for their own disabilities and how it effects their safety, comfort, well-being and passing. Maybe then it won't hurt as much?

  - Debbie

• August 31, 2008 12:07 p.m.

  My dad was recently diagnosed with dementia. I've been trying desperately to get all of my siblings to help more with our elderly dad, even before the dementia diagnosis. I'm the only one who checks up on him regularly (once a day visits, whenever possible). Two out of my 4 siblings seem to be interested only in stirring up trouble within the family. They seem to resent me, partly because I'm the one who is the closest to our dad. My dad has named me in his legal documents to represent him in the event of his incapacity. He did this because he knows that I will protect him no matter how difficult things become. I stuck by my mother's side during many years with Alzheimer's Disease, until she died 1 1/2 years ago. So, how do I help my family get past the resentments and hostility (which makes the care of our remaining parent even more difficult than if I was an only child)? I've tried everything I can think of (individual phone calls, individual emails, group emails, prayers, etc.) but it seems as though certain members of the family only want to play games and aren't making any genuine effort to get along and work together. Should I just give up on the 2 hostile siblings and simply concentrate on fulfilling my legal duties toward my dad (to protect him from those who might try to take advantage of him and to make sure he is reasonably safe & comfortable in his own home as long as possible)?

  - CC

• August 30, 2008 12:59 p.m.

  My mother died recently after 13 years as a victim of Alzheimers. Ten years ago, at the age of 58, my oldest brother was diagnosed with early-onset Alz. Just last week my other brother was diagnosed at age 63 with cognitive impairment and short-term memory loss. This disease is taking my whole family. I am devastated and in mourning over this latest news. It could come stalking me next. I am 62. I was my mother's caregiver for several years and finally wrote and had published a book: "Every Day a New Adventure: Caregivers Talk about Alzheimer's Disease." I interviewed 5 other caregivers and one person with the disease and told mine and mother's story as well. This is not a self-published book. It is an intimate look at what Alz does to families and the difficult job that caregiving is. As my daughter says, You laugh; you cry. But most of all, you believe! If you're interested, the book is available through PublishAmerica.com and Amazon.com. If it is of help to someone, I would be proud.

  - Joan Kelley

• August 24, 2008 4:54 p.m.

  My mom has had AD for ten years. Her case was mild at first, a little more forgetful, got lost while driving a few times, often confused about little things, but she steadily progressed to moderate+ over the years. At first my father wanted to put her into assisted living right away. My brother and I fought him on that, we knew it would break her heart and we just couldn't do that to her. My father got power of attorney over my mom and resentfully said he would be the caregiver. Mostly he was (and still is)very angry about her being so needy. He truly believes that "she does this on purpose!" He resents the fact that we don't take a bigger part in her care, when we have our own families and jobs to attend to. We have encouraged him to get PT help in the house, but he won't part with the money. We go on weekends to take her to our kid's sporting events & for ice cream etc. Because I was not willing to take care of my mom 24/7 for two weeks when my father wanted to go on a trip, he no longer wants me around. I told him I will still continue to come by on the weekends to shampoo my mom's hair and make sure she has clean clothes on. I also do her laundry, change her bed, take her to the hair salon and pedicure place, make sure she has her toiletries and toilet paper, & check for her overall health and well-being. My father pays the bills & taxes, cooks one hot meal a day, & pays the cleaning lady to come every two weeks.I know my mom would be so sad if s

  - Madelyn

• August 3, 2008 12:18 a.m.

  My mother died on Christmas Eve, 2000, after being diagnosed with Alzheimers 5 years earlier; it was, as the doctors put it, very agressive and fast. She went from a vibrant 75 year old woman to almost a zombie-like state within a matter of a few years; not to mention all the health problems that went with it, including a leg amputation due to a blood clot. My three sisters and brother helped my dad as much as possible - the folks lived 150 miles away from us - we developed a schedule of who would be up there with them each weekend and tried to stick with it...this gave my dad some much needed rest. We also had a woman come in daily to help my dad with my mother's bathing, etc. She was a God-send. My dad, too, has since passed away - October of 2003 - complications from pancreatic cancer. He was very alert to the end and we were all with him when he died. All I can say is the thing that helped us the most with my mother was a book - can't remember who wrote it, but the title is "The 36-Hour Day". Please read it -- we each had our own copy and it did help us. I can only say my heart is there for all of you in your heartache.

  - Mary

• August 1, 2008 8:15 a.m.

  The complexity of demetia disease that my Dad has, and the ups and downs it poses for all involved is truly a complex challenge to say the least.I have lived next door to him for the past 6 years. I slowly have progressed to up to 50 hours a week for his care. My sister has too. the goal: keep him home. The financial stress, and the time that it has taken is affecting us beyond reasonable measure. I will say, we are just making it. The blessing is knowing he has exceptional care. He thanks us in his lucid moments with such kindness, you know he is "still there. The stress however has damaged my sister and I's relationship to a most probable point of dis-repair. The other siblings live too far away to be of any sustained support. I wish there were more alternatives for care in home, instead of Nursing homes... which are truly under staffed beyond imagination. We saw it first hand! We have given my Dad 24 hour care since Jan 17, 2008 and It has cost us: up to 150,000 dollars... My business has suffered. my health is in all aspects is showing it's wear, and all my relationships are stretched. I would say the same for my Sister. We both have our opinions, and I find that she, especially under this stess is not a team player. Old issues not resolved come up especially under fatigue and stress. so, my hope is to set my life up to not have set up a aging plan before I age too far, so not to place such extreme stress on my loved ones.

  - JP

• July 17, 2008 3:46 p.m.

  I'm the evil brother you all seem to hate. I live half way cross the country from where my father with Alzheimer's lives. I spend about $1,500 per month to visit him, which is fine because I can afford it. All my siblings live in the same town as my father. I just got back from my last visit. I had planned on staying at a hotel, but my siblings said I had to stay at his house. I got, maybe 2 hours of sleep per night because he kept waking me up looking for stupid things. The last straw was when he woke me up and threatened to kill me for stealing from him. He told me to get my blank ass out of his house. Of course, every time I visit I get nothing but obscenities hurled at me. I realized this time that when I graduated from high school, I went to college 3,000 miles away just to get as far away from him as possible. He never liked me and I've dealt with that through therapy, and am fine that he loves my brother and not me. But I'm DONE! I wrote him a letter telling him to remove me from his will because I won't be going to his funeral, and have called an attorney to se how hard it would be to change my name. What I've learned is that these lunatic's behavior is the same as when they were young, only magnified. Why should I bother with a man who never cared for me in the first place? In my den, I had a wall covered with generations of family photos. I took them down and sent them off to my sister and said I'm not part of this family anymore.

  - steve

• June 14, 2008 10:31 a.m.

  Judy, not getting impatient is about gaining a skill. And that skill comes with a true understanding and acceptance of the illness of the person. You have to really believe and understand that the person is not capable of the thinking processes we are expecting of them. And that is largely about being, and staying, educated. You will need reminders - that their lack of insight is more about an inability to have insight than a deliberate act. This behaviour stuff gets pretty tricky though ... but if you KNOW she has an underlying cognitive impairment (including dementia), you can safely remind yourself to love her through it (versus being impatient) because she is not capable of more. I take reassurance that the stuff that doesn't make sense, doesn't for a very good reason. And most importantly, know your boundaries - undoubtedly, it will get frustrating and in those times we all must walk away to rejuvinate. I'd also highly recommend a support group, if you can find one that you fit nicely with. The other VERY important thing to remember is the person's dignity. Our loved ones who are going through this are struggling with many losses, if not on a conscious level, they are on a subconscious level. Lastly, these situations do change with time, so if you don't have good solutions now, maybe they will come around the next corner ...

  - Emmy