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• Housecall
• Alzheimer's caregiving
• Living with cancer

• September 28, 2007 4:27 a.m.

  NDAUNTIE - thank you for responding - and having someone come in once a week sounds good to me - i just worry about getting him upset and hurting his feelings. so this is the small stuff, huh? we deal with confusion, forgetfulness, moodiness, extreme boredom - he won't play games, go to senior citizens, etc. but all in all, he's pretty wonderful - gotta love him.

  - jackie (jc)

• September 27, 2007 1:58 p.m.

  Hi Susan, I visit at least twice a week, sometimes more depending on what is happening there. There are often activities organized and I try to go to some of them with Dad, because it helps to get him out of his room and might make him more interested in participating. It doesn't always work but he enjoys the visits. We talk on the phone several times a day and I always call around 9 pm to say goodnight. He doesn't feel abandoned, but he still feels sad that my mother is gone. The worst thing is when he forgets that she passed away (he doesn't remember anything about the hospital or the funeral) and then I have to tell him and it's like the grief is fresh again. Once he phoned at 10:30 pm and asked if Mom was cremated. He wanted to be buried with her and he didn't remember what had happened. I didn't get much sleep that night. It's much better now that more time has passed.

  - Pam

• September 27, 2007 12:14 p.m.

  To Nancy: Even before my mother was diagnosed with Alzheimer's we started noticing that the liquor cabinet still had the bottles in there but they were empty. Then she came to live with us, we found her up at all hours of the night and early morning drinking straight liquor from the bottles. We moved the liquor to another part of the house. We then noticed that the bottle of tonic water in the refrigerator was empty. After some thought we realized that she thought tonic water was booze. So we kept the frig full of tonic water and it disappeared on a regular basis. Would filling vodka bottles with something like tonic water help? Would he know the difference? Certainly can't hurt to try. Good Luck.

  - Sharon

• September 27, 2007 10:41 a.m.

  It seems there a lot of us out there, that are dealing with Alzheimers in loved ones. It seems that there's a need, to express yourself more completely, and have feed back with your issues. This site at Mayo Clinic is nice, but there are others available that may be of more help. They are: http://health.groups.yahoo.com/group/AlzheimersCaregiving/ http://health.groups.yahoo.com/group/mymotherhasalzheimers/ http://health.groups.yahoo.com/group/alzheimers/ http://health.groups.yahoo.com/group/Early-Onset_Alzheimers_Caregivers_Group/ These are but a few, of the groups that are located at yahoo. They are free, and you need but to join, to get involved in any of them. I hope this helps. I don't mean to step on anyone's toes with this, but to suggest other sites that may also provide help to us. Good luck.

  - Randy

• September 27, 2007 10:05 a.m.

  Jackie (JC) don't sweat the small stuff! I learned the hard way with my mother. The staff @ nursing home told me that when people are older they don't need full baths every day. Get some adult wash/wipes for underarms and private area. My mom gets a bath 1xweek and she does just fine. It was a battle at first to get her to do just the 1 x week! Hang in there! They also figured out that she was better with different people. Maybe an aide could come in 1 or 2 x week and give him a quick bath.

  - NDAuntie

• September 27, 2007 9:05 a.m.

  A couple of specific things -- my parents-in-law wanted to do the same thing that someone else mentioned, moving back to a place they had lived in 50 years before. In their case it was easy to stop them, since they would have needed passports to go back to Britain, and they didn't even remember that they had them! -- I have also heard about the problem of Down's syndrome adults being liable to get early-onset AD - and it does sound very hard to deal with. -- another comment is about the site - it is very annoying to deal with a space that only lets us post 1000 characters - o.k., since it's an obvious limitation - but also refuses to allow spaces between lines or even new paragraphs. -- so I'm adding dashes to indicate separate thoughts. Seems to me that an important aspect of communication is to be able to separate ideas - and we all need to prove to ourselves that we are able to communicate properly!

  - Leslie

• September 27, 2007 7:57 a.m.

  I have scanned a lot of the comments here and will have to read again, and try to comment on a few specific things I know about. I'm certainly not a professional, but I've had a lot of experience - much more than I'd like, already. Both my father- and mother-in-law have had AD - plus other family and friends. We are of course concerned about how it is inherited, and what kinds of preventive steps are available. He had a very quick course of the disease, less than a year, but she has had it for at least 8 years and is still not in a terminal stage. But we also have a friend who lost her younger brother to it - she is 4 years older than he was, and is still mentally sharp, though she is beginning to have a few physical problems. So the main thing about this illness is that it is impossible to predict what will happen - age of onset, how fast a decline will be, or who will end up with it. I'm hoping that the Mayo people will give us an idea of what will happen to help in the future!

  - Leslie

• September 27, 2007 2:52 a.m.

  My father died of AD at age 94, my mother died at the same age with severe dementia. My sister is now 75 and is in midstage AD. I am at 59, and realistically very concerned about my own future. Seems like I am always dealing with some memory issue. I am divorced, live alone and am completely self-supporting. I need to be able to continue in my intellectually demanding profession until I am 65 to qualify for retirement. I worry about this often and do not want to be a burden on my children, who are much too young to have to deal with a parent with any form of dementia. I take a couple OTC drugs, including a lot of Omega 3, to deal with brain function. My doc has suggested that I also considered Aricept in about eight years as preventative, although that would be out of pocket. Would love to hear from others in my situation--how you deal with the fear and isolation.

  - anne

• September 26, 2007 10:10 p.m.

  The comments and suggestions on this site are so encouraging. I've been caretaker full time of my dad for 3 months now - and my sister and I shared helping him for over a year before that. If anyone can give me advice on how to get him to take his baths and shave I would love to hear from you - He almost seems to have a fear of water.

  - jackie (jc)

• September 26, 2007 7:41 p.m.

  My mother is in the middle stage of AD. She thinks people come in the house while she is sleeping and takes things from her. My aunt, her sister, also has AD. My mother calls my aunt to tell her people are coming in her house at night. My aunt then gets upset and calls me. I tried to assure my aunt that its the Alzheimers that's telling my mother that people are coming in the house at night and that she is safe. My mother misplaces her things in the house, so if she can't find something she blames it on people that she imagines coming in the house at night. My aunt nor my mother will accept the fact that they have AD. It is a very cruel disease for people to suffer. I have learned to deal with it, but people that don't have a love one with the problem don't know what its like. I do know that I have become a stronger person. We all have become stronger as caregivers of our love one suffering from AD. We all have no choice but to survive this ordeal emotionally and learn to cope.

  - Debbie

• September 26, 2007 7:29 p.m.

  Although I do not have a family member with Alzheimer's disease. I do work at a facility with 24 wonderful people that have it. I consider them my family. There is a wonderful website that has lots ofs of information on how to "Create moments of Joy" with people with Alzheimers. It is www.enhancedmoments.com This is what we do our staff training from. It helps to shed a lot of light on some of those tuff days. I also wanted to comment on those of you that do not have a support group in you town. How about posting an ad in your local paper. Even if you don't have a professional to run it you alteast have someone to talk to face to face. I hope this helps some!

  - Tina

• September 26, 2007 5:22 p.m.

  My wife is in early stage of Alzheimers and I am the caregiver. Her age is 78.The onset of her AD seems to coincide with a major relocation of homebase and her having a mild stroke.I also recently noticed tha she is more agitated around the time of full moon.Would appreciate some input. Thanks very much

  - roboro

• September 26, 2007 5:16 p.m.

  Caregiver's Bill of Rights Providing care for a person with Alzheimer's disease is often a stressful and demanding ordeal. It is important to remember that caregivers have human needs and emotions. They must care for the patient as well as themselves. The Alzheimer's Family Relief Program's "Caregiver's Bill of Rights" offers some tips for coping. IT IS ALL RIGHT TO: * BE ANGRY. Turn this energy into positive action. Clean closets, take a walk, talk with someone. * BE FRUSTRATED. Stop the present activity, take a deep breath and begin a different activity. * TAKE TIME ALONE. A favorite chair in a quiet room, a trip to the store or a few hours out with friends. * ASK FOR HELP. Explore family, friends and local agencies for resource services. Most doctors' offices and clergy can make referrals. * TRUST YOUR JUDGEMENT. Relax, you are doing the best you can. * RECOGNIZE YOUR LIMITS. You are a valuable person. Take care of yourself, too!

  - rosa

• September 26, 2007 5:13 p.m.

  I agree with Mimi that in the early stages they are grumpy.My husband became so frustrated that he could not do the tasks he used to do. For the longest of time he was in denial about his disease, and blamed everything on me. That i was the one who had alzheimers, and hiding his tools etc.I think he has accepted it now just recently and he seems to be more mellow. He was diagnosed in 2002. I have joined an alzheimer support group, which meets once a month. Sometimes it helps to talk to other people who are experiencing the same feelings, frustrations and challenges. In the beginning of my husband`s illness I did not have much patience, but I have learned so much since then.I just have to keep reminding myself that is not him talking, it is the disease, and not to take it personally. Providing care for a person with Alzheimer's disease is often a stressful and demanding ordeal. It is important to remember that caregivers have human needs and emotions.

  - rosa

• September 26, 2007 3:56 p.m.

  My husband is very hard to wash. He is scared to have my hands near his face or body. Does anyone have any suggestions on how to take that fear away. I dread bathtimes. Thanks

  - Shirley

• September 26, 2007 2:43 p.m.

  So glad that Angela started this site. Just reading that what other people are going through really helps. I have an 82 year old Mother who was diagnosed in Feb. with dementia and Alzheimer's Disease. I sold her home in FL after she had been with me and my husband for over a year. We knew she could not be alone anymore. I put her in an assisted living facility in June of this year and she has adjusted very well. Seems like I am the one that is taking the changes harder, but I know she doesn't realize the real world anymore and I am sure that is so difficult and frustrating for her not remembering. She is on Razadyne and we could tell a big difference once she started taking the medication, but now confusion is setting in more in the evening it seems. She also has macular degenerative, a pace maker and diabetes. I have so enjoyed reading everyone's experiences with this horrible disease. Good to know you are not alone. Prayers to all who are suffering and those who are helping.

  - Monnette

• September 26, 2007 2:14 p.m.

  hello to everyone. my father 88 yrs, has alzheimers for 9 yrs. my mom died of alz. 10 yrs ago. up until 8/11/05 my dad lived w/me. my sis and i got him into a catholi charities not for profit home in la. i did a lot of research on homes, medicare, medicaid(medical in calif) and the medicare web site on line for facts and myths. dad hardly recognizes me any more and is in the last stages. ifeel for all of you since i have been there myself. i learned that after my dad went into the home he received better care by health professionals and quite frankly it was a relief...its been two years and i still have some guilt but he is very comfortable and loved. thats what i want for my dad. love to all of you...be nice to yourselves kevin

  - kevin j burns

• September 26, 2007 1:37 p.m.

  my husband and i have been married 64 yrs. he was diagnosed with dementia 2 yrs ago. i am sole caretaker. ihave arthritis, osteoposrosis. and some days it is very difficult to cope. also have both knees replaced and both hips replace. my husband knows he does not remember things as he should, but he has always had a good sense of humor and we joke about things he does. he attends day care, which our community awarded me with as respite. my husband enjoys the bus ride and all the people he can entertain at the "bingo place" he is so happy when he wins a prize to bring home to me. he has started to hallucinate at nite, yells and talks out loud and even curses, which he never did before. the doctor attributes it to the medication. it keeps me awake all nite, then the next day is very difficult.I know that worse days are coming, but try to see both sides of the illness.

  - lorie

• September 26, 2007 1:12 p.m.

  Both my mom and my husband have Alzheimers. I was able to care for them at home for 11 years. In 2004 I placed my mom in a care center. She had a secondary infection due to her diabetes and was hospitalized and that time it was recommended that she be admitted to a care center.It was then I realized how much stress I was carrying. I used all our financial resources to keep them both with me, but eventually upon foreclosure of my home I was forced to admit my husband to a care center. I miss them both very much and spend as much time as I can with them at the care center. I especially miss my husband, my best friend. If I needed to do it all over I wouldn't change a thing. I am still healing from the financial and emotional stress and day by day things get better. It feels good to tell my story. Thanks for listening!

  - Sue

• September 26, 2007 12:56 p.m.

  This is a great site even if questions dont get answered, it is a place to vent as a caregiver. My wife was just diagonsed with early onset AD at age 40. She has similar behavior mentioned previously-closing the blinds during the day, flushing the toilet repeatedly, turning on the air cond when it is 65 deg outside, ect. We had genetic testing done and they discovered she has the APO e gene but I thought that was consistent with older age AD so I'm not sure if its AD or something like FTD. Any insight would be much appreciated. I am also running into a lot of roadblocks on the financial end but I am hoping and praying disability will come through as she can no longer work.

  - Scott

• September 26, 2007 12:25 p.m.

  My father had the beginnings of Alzhiemers when he died at the age of 84. He also had other health problems so the last year of his life we watched him slowly slip away from an active life to a silent shell of a man. It was so hard to deal with. I recently had some of the same symptoms (memory loss, stress incontinence, unsteady walking), but since I am only 54 my doctor did an MRI and discovered I had hydrocephalus. I now have a shunt from my brain to my abdomen and hopefully I will recover completely. Don't just accept the diagnosis of Alzheimers until you have been examined by a doctor, especially if you are still fairly young. My uncle died of dementia when he was in his fifties (we thought it was alheimers) but now I wonder. I miss my dad (the memories of when he was healthy) but I know he is looking down from heaven and in perfect peace. -Gayle

  - Gayle

• September 26, 2007 12:21 p.m.

  My mother had Alzheimer's. My father and I were able to take care of her at home. 1. To Allen Hick. Change your normal routines. If you first put on your right shoe, put your left shoe on first. If you put both your socks on before your shoes, put one sock and one shoe on, then the other. If you are right handed, do as many things as you can left handed, etc. Be inventive. This grows new connections in your brain and sometimes can at least slow down the process. 2. For caregivers, family, etc. In the early stages patients might be VERY grumpy and hard to handle. Sometimes this is because they are frustrated that they can't think and do as they used to. With Mom, once she was diagnosed and we made sure she understood what was going on I told her to just sit back and enjoy the ride. We would take care of her and the house. After that, she was a pussy cat. Remember that the weird things they do, they can't help. Show them love and that they are not a burden. This makes it much easier.

  - Mimi Gibson

• September 26, 2007 10:52 a.m.

  The mist falling soft on the footath No light shines to illumine the way. The wind makes the sway of the willows. A dance for those.lost and astray.In the dark of the night go the lonely. Just hoping for some ray of light. Their search in the day disappointing. Broken hearting they search in the night.The darkest of night before sunrise.The saddest of times brfore morn. We wait with great anticipation. With a new day a new hope is born. A ghost of a smile on her soft lips, Her eyes says she knows who I am I tremble with great anticipation. For my mother is,temporarily, found. No words do we,need to exchange now. We share with the love in our eyes. Her memory returns-our tears glisten. What a, momentarily, pleasant surprise.

  - Horace

• September 26, 2007 10:39 a.m.

  I also am hoping we will hae more preventive ideas come up here about AD. want to thank Mayo clinic for sponsoring this!!! since i have an uncle who died of AD I also wonder if I may be in line later, he was in his 80's when it hit him. He had to be in a nursing home and it was painful for us to see him decline.

  - Eviana

• September 26, 2007 10:25 a.m.

  I am 80 years old. My mother died at 91 with Alheimers. Her sister died at 96 and her brother died at 95, both with Alheimers. I find that I am getting forgetful and have trouble remembering events and things that happened. I am so afraid that I will get Alzheimers. Is there anything I can do to prevent it or delay its onset.

  - Allan Hick