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• Housecall
• Alzheimer's caregiving
• Living with cancer

• September 25, 2007 7:20 p.m.

  my husband of 46 years,develope alz at the age of 62. He is now 67,I'am his caregiver,but also have to work to pay the bills. We got him on the edlery wavier to help with the medical because we had no health insuance. Does anybody know of any other help,so I can stay home with my husband,I don't like leaving him alone,and can't afford help

  - sue

• September 25, 2007 7:14 p.m.

  My husband and I are caretakers to his mom who was diagnosed 3 years ago with early AD. She was a very independent woman, now 89 and it broke my heart every time we had to take away some independence. I have to admit that our area in northern WI has as much support for the AD patient, their family, and their friends as anyone could ever want. My husband has cut his work by 80% in order to care for his Mom which puts a lot of pressure on us financially and affordable home health care is difficult to find. Our only need for outside help is in the challenging area of personal hygiene. We are also blessed with her physician who lost his mother to AD and every case he treats is very personal to him. It will be very soon that we will be faced with a decision about extended care. I appreciate Angela's comments about POA and health directives being in order and our youngest son at age 25 brought up that we should also think of setting up the same for ourselves.

  - Anne

• September 25, 2007 7:13 p.m.

  What are the legal/moral implications of my father opting to withhold medical care and medications for my mother who clearly is suffering undiagnosed Alzheimers? Her vote is no meds; but how can an afflicted person decide their own care? What is an adult child's recourse? Any comments?

  - jenny

• September 25, 2007 6:50 p.m.

  There are several questions out there from many of you about Alzheimer's and Dementia. Let me try and explain. First, senile Dementia is a defination from the past. Most people in the know about Dementia no longer use that term. Dementia is an overall defination of any thing that realtes to a problem with the brain. The last I knew there were over 100 different kinds of dementia. Alzheimers is the biggest of all the dementias. Look at it as a house with 100 rooms. The total house is DEMENTIA. The largest room in the house is ALZHEMERS. Hope that help clear it up some. The way Alzheimers was diagnosed many years ago was by the elination of all the other kinds of dementia and that was then called Alzheimers. Today, the best clinicians are about 95% accurate in their diagnosis. It is true that in the past the only real diagnosis was after death. That is not really true now with all of the advancements that have been made in the last few years. Out of room now

  - Duane

• September 25, 2007 6:37 p.m.

  Mom has had some sort of dementia for 8 years. She seemed to develop it when under the stress of day/night caring for my father. During the last year she became paranoid and I took her off aricept and namenda. She has been happier and the paranoi is gone. Her short term memory is terrible and of course she is losing long term gradually. At least she is happy most of the time. She is staying at home with care givers and me coming and going. At 97 I hope this will the way she can live for the rest of her life.

  - Sue

• September 25, 2007 5:50 p.m.

  We recently had to move my Mom from Florida to a skilled nursing floor in an assisted living facility in Dallas. She was diagonsed with AD in Feb. and then broke her hip in July. Since last September when she broke her wrist she has had 24/7 care in her apt. She has declined since her arrival here and is going thru her second bout with C-diff. She is demanding to go home. Her agitation and confusion is at an all time high. They have told me to limit my visits to a few times until she adjusts. This seems barbaric, not being able to see her more often. I want to do what is best for her. Since I am an only child I feel so responsible for her well being. Please advise.

  - susan

• September 25, 2007 5:35 p.m.

  My Mom who is 95 has AD or Dementia. Right now the name doesn't matter her short term memory is about nonexistent. she was always a night owl & now that I know what it is I would say she was a bit "OCD". Her nightime behavior has become increasingly worse. She get up 4 to 8 times a night to check that the doors are locked. I spoke to her Dr. about this but he feels its all part of the disease & the sundown syndrome. I can agree with that somewhat, but I strongly feel that her OCD has been exacerbated because of the AD & perhaps increasing or giving anxiety meds may help. Anyone have this particular problem-yet?

  - Madelyn

• September 25, 2007 5:02 p.m.

  I have read all the comments posted and never, once have I seen anything on children with Down Syndrome having Alzheimer's. I am a caregiver to my brother, who is 47. He was born with Down Syndrome and two years ago was diagnosed with Alzheimer's. He has lived with me for the past 10 years and I have loved him as my own. But, unfortunately, it has become more and more difficult for me to take care of him. I am aware that seniors have "lucid" moments and are able to communicate with their caregivers and be told what is wrong with them. My brother does not understand any of it. He does know something is wrong but doesn't understand the disease at all. The disease is progressing rapidly. I have had to put his name on a list for the nursing home. He needs 24 hour care now. It is breaking my heart to have to place him somewhere else. I get angry at the "Powers that Be" because everything he has had to learn over and over again, over the years, is now suddenly taken away

  - Carrie Caines

• September 25, 2007 4:51 p.m.

  My husband & I have been the primary caregiver for my 86 yr-old Mom. Her memory began diminishing after a heart attack in 2001. About two years ago, she became very paranoid and distrustful and primarily exhibits these behaviors towards my Dad (they have been married for 65 years). She was verbally and physically abusive towards my Dad to the extent that we had to bring her into our own home so they could live separate. My Dad is now living with us, too, and this seems to cause her alot of anxiety. I have an autoimmune syndrome (in the same family as Lupus) so this has been extremely difficult for me physically as well as emotionally. But, at the present, I do not feel that she would do well in a nursing facility. I think it would exacerbate her insecurities and her health would deteriorate rapidly. She loves going for rides, to Mass, and out to breakfast for waffles. Doing these things for her and giving her small tasks that she complete successfully seem to help her a great d

  - sherie

• September 25, 2007 4:50 p.m.

  Mike, as I stated previously, try and get a book, that describes all the different stges, someone with alzheimers, goes thru. I won't say the moon has a part in it, but the aggression, the language, and other actions, are all part of the phases they go thru. After I read the book for my grandfather, I was able to understand, and better handle the phase, where he followed my grandmother around. He didn't know he was doing this, but she thought he was mad at her, thus followed her around the kitchen table, in circles. But because I had read the book, I understood, it was a phase he was going thru. He meant no harm, by following her. But it scared her. Everyone, read a book, and learn the stages they go thru. You'll be glad, of the understanding, it gives you. It'll make it easier, caring for them, by you.

  - Randy

• September 25, 2007 4:42 p.m.

  Thanks so much to Mayo clinic and Angela for the opportunity to share and help one another. My experience is both professional and personal. My dad had Dementia with Lewy bodies. Some of you may be aware of that illness. Dad's journey inspired me to write the book Eldercare for Dummies. I can assure you that being pin the healthcare profession (as nurses, social workers, physicians, etc.) does not protect you from the emotional pain and physical stress of caring for a loved one with Alzheimer's or any of the other dementias.

  - Rachelle

• September 25, 2007 4:42 p.m.

  Marc, In my experience, my Dad seemed to go through periods of quicker decline, then level off for awhile. If the agitation is late in the day it could be sundowning. Overmedication was another factor for my Dad. To DPerkins, there are many kinds of dementia, not all are Alzheimer's, but the reality is just as devastating to the family. Would your situation have been different if your parents were diagnosed with something other than Alzheimer's? My condolences to you, especially since my Dad is near the end.

  - Sophia

• September 25, 2007 4:39 p.m.

  I have been caring for my mother who is 85 and was diagnosed several years ago with AD. My daughter helps me as she can - she has her own family to care for as well. Mother requires 24/7 care and we are having a difficult time trying to find affordable help. She does not qualify for Medicade nor nursing homes. She does not need skilled nursing. Of course she could go to a special care unit in an assisted living center but the cost is prohibitive. I finally found respite care, but also very expensive on my budget. Is there any help out there I'm overlooking? I really need a break. HELP!

  - Betty Mac

• September 25, 2007 4:37 p.m.

  I wonder if anyone is going to be available to answer all the questions that have been asked?

  - Terry

• September 25, 2007 4:34 p.m.

  I have a question. My father is in the moderate stage of Alzheimer's disease. My mother is his care partner. While the loss of memory seems to be the toughest part of this for him to accept and deal with, for my mom, the toughest part is experiencing the behavioral changes which her spouse of 51 years is now exhibiting (including agitation, agressive behavior, and cursing.) He never acted this way prior to the onset of his disease, however, his agitation and aggressive behavior seems to worsen when there is a full moon. Has anyone experienced a similar "full moon affect" with regards to a loved one with Alzheimer's disease? Is this simply a coincidence that I've taken note of, or might there be some precautions we can take to lessen his agressiveness and agitation, if this is indeed a definitively known factor that affects other people with AD?

  - Mike

• September 25, 2007 4:28 p.m.

  It is my understanding, after loosing my parents to what we thought was Alzheimers, that Alzheimers can NOT be diagnosed until death. How is it that Mayo does not mention that in any article? Thank you

  - DPerkins

• September 25, 2007 4:12 p.m.

  Debbie, I understand your situation very well. People, will simply do what THEY THINK, is best for them. Not always what is best for someone else. If it's any help, you'll feel satisfaction afterwards, because you didn't give up. For you, and everyone else in your situation, I really recommend, that you read a book, that explains all the different levels, patients go thru, and it helps you understand, why they do the things they do. It's an understanding, of what Alzheimers causes. I don't remember the name, after all, it was over 20 years ago. But ask at the library for their help, in finding a book like that. I really believe, you'd be relieved, after reading it. Many things they do, we can't understand. But they don't really know, that they're doing it. Reading, and knowledge, will help you very much. Hang in there, you'll be grateful one day you did.

  - Randy

• September 25, 2007 4:11 p.m.

  Does AD take a sudden downturn in symptoms in the moderate to late stages? Could there be contributing factors such as a mini stroke or a TIA that would cause greater degree of forgetfulness, anxiety and confusion?

  - Marc

• September 25, 2007 4:04 p.m.

  Is there an effective medication for the moderate to severe stage of AD? A family member took my loved one off Radazyne without supervision and patient has been on nothing since-about 20 months now. Loved one's decline is drastic in the last few weeks and is now in full time nursing care and experiencing some complete loss of recognition and delusions along with severe anxiety. What medications,if any, would be helpful at this stage? Thanks

  - Audrey

• September 25, 2007 3:54 p.m.

  The best advice I can give is to be sure you have a Power of Attorney and a Health Care Directive signed. There will come a time when they are unable to take care of their own finances and unable to make their own medical decisions.

  - Angela

• September 25, 2007 3:47 p.m.

  Hello Emma: I am not a doctor so I can not give medical advice but I understand from what I read and hear that there is no such thing a senile dementia. While various types of dementias have the same symptoms as Alzheimer's, you are correct in stating that without an autopsy a diagnosis cannot be definite. However, with today's advances, a good neurolgist can diagnose the condition of Alzheimer with with a great degree of accuracy. I do take my hat off to you for caring for these people though you state you have no one in your family who is afflicted with the disease. May God give you a long life to continue your ebdarvor.

  - Tony

• September 25, 2007 3:38 p.m.

  My mother turned 92 on Sept. 3rd. I have been commuting over four years now to take care of her in her own home. It takes me over an hour to get to her home. I do not have any family members to help me, nor do they ever call me to give me support. I sometimes have felt very angry about the lack of family support. It has been a drain on me emotionally and financially since it effects my ability to work full-time. I am very worried what will happen in the next six months as my mother gets more and more confused. She is in the middle stage. My biggest problem is her stubborn personality that she has had all her life. She doesn't like anyone in her home, so it makes it difficult to hire help. She won't let them in the house or she is nasty and tells them to leave. My mother told me that she wants to die in her home, so I have arranged to have hospice when that time comes, but in the meantime I am beside myself and I am getting very tired. Debbie

  - Debbie Shapiro

• September 25, 2007 3:24 p.m.

  My husband, 71, is diagnosed with Mild AD and is currently on Namenda and Remeron. What are some activities that are recommended to help with cognition? At this time he is starting to lose names of common objects; no phone conversations and most names of people that are not family are gone. Thanks for any help!

  - Linda

• September 25, 2007 3:16 p.m.

  My grandfather, Wilton, who with his wife, Maude, raised me from birth. He was diagnosed in 1982, as having Alzheimer's, and passed away, Jan. 21, 1986, because of it. His dr. suggested a book to read, that detailed all the different stages, that people pass thru, and it was a great help, in understanding why, he did certain things. His wife, Maude, my then wife, Shirley, and myself, were the ONLY caregivers, that he had. And yet, we NEVER abandoned him, or thought he was causing too much trouble. With the exception of occasionally being hospitalized, he stayed at home, and that is where he left this world, in the hope of an after life, that God would give him. We ALL enter this world as babies..., and at least, in his case, leave it as a baby as well. For some time before passing away, he was TOTALLY bed ridden, he had lost ALL ability, to care for himself. Not only having to have a tube inserted in his stomach to feed him, but ALSO, to give him fluids. He FORGOT, he HAD TO SWALLOW.

  - Randy

• September 25, 2007 3:03 p.m.

  i hae had experience taking cae of my mother for 8 yrs. while she was decending into dementia. i would like anyone taking care of someone to know it is hard work but you should be careful to get help or talk with someone about the problems this presents. the person with the problem cannot help themselves with their personality, anger, etc. i know my mom felt like she was losing her brain power and my sister and i felt helpless to explain things to her. we had a good doctor and we did all we could for her. do not get angry when the patient does, just understand that they can't think properly and probably feel bad about many things happening to them. just be patient and get enough help and rest for yourself. you deserve it.

  - patricia a krupica