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• Housecall
• Alzheimer's caregiving
• Living with cancer

• August 19, 2009 2:27 p.m.

  Thank you for sharing your experiences. It's good to know what others are also dealing with. Recently, my mom has been showing symptoms of AD. She's 89 years old, very independent and lives alone. My sister and her live in the same state but my sister refuses to live with my mom. My sister has been hinting that she is tired of taking care of my mom. I live out-of-state and it has been difficult to decide what to do for my mom. I have asked my mom to move in with my family and me but she refuses. I have also offered to move in with my mom and to take care of her, but I hesitate because that means I will have to be away from my family indefinitely. What to do?

  - No name given

• October 29, 2008 11:30 a.m.

  I just got through reading these post. They were all very helpful. My mom is 85yrs old. She had open heart surgery last year and now we have this. AD, they are not sure if its lewy bodies or vascular, any way its mind stealing. I thank you for answering alot of my questions, the last week we have been on a roller-coaster ride of memory. She has MD also, and has been legaly blind for about 10 yrs, and I ask her all the time how does she see that stuff when she doesn't even know what I look like?? She just laughs. I praise the Lord she is still gentle and sweet. Thanks for your posts,I'm not alone.....becky

  - Becky Hawthorne

• May 3, 2008 5:44 a.m.

  My husband is 72 and has not been diagnosed with anything, because he won't be checked. I'm relieved to find this website, because I beat myself up all the time for my reactions to his changes--e.g., my impatience in having to tell him the same thing over and over. Can you help me to understand the very early stages and what to expect as we progress?

  - Laurel

• April 12, 2008 9:00 p.m.

  I have this awful feeling of hate towards my husband. He is nasty all the time and I dont know how to cope any more.I worked very hard all my life and now I still have to. They say that you can live pretty normal life. That is not true for me I am very bitter. He never shuts his mouth. All day long he tells me how rotten I am. I get help for my mind. Ineed a lot of prayers please

  - donna

• April 12, 2008 8:38 a.m.

  I suspect my mother has Alzheimers and so does our family doctor. It would help me plan for the future if I knew for sure. But Mom adamently refuses to have the more specialized testing for its probable diagnosis. She says she doesn't want to know unless she becomes a danger to herself. Should I insist on the tests or go by her wishes?

  - Tracy

• April 9, 2008 3:30 a.m.

  My mother is 89 and has alzheimers and dementia. Repeating is frustrating and being a daughter, she constantly wants control. I find it exhausting and often forget my own needs. My family is of no help. More good hearted persons are performing this necessary service and little attention is given to our country's rising need. As sophiticated as our society is, caregiving is of upmost importance. I hope this changes for such a debilitating illness with carries such sorrow.

  - terri

• March 31, 2008 8:30 p.m.

  I am the main caregiver for my mother in law. She is 79. My husband helps, but not with the showers, dressing, etc. She also has aphasia and it's quite fustrating trying to communicate. I do get depressed and try not to let it show. My husband is very kind and would put her in a home if I complained, so I try not to. We recently retired, young at 50, and this was not in the plans. She has been here for 1 & 1/2 years and recently seems to be getting worse. I am glad that I found this website, just to get these things off my chest. Thank you. I'm glad I'm not alone.

  - Kathy

• March 5, 2008 5:21 p.m.

  Vonda, My mom is 86 also and with us for 5 yrs. Regarding sleeping routines, they periodically change. Initially the tv was on all night, then the window shades were always up, now the bedside lamp is on until I turn it off in the morning. From time to time she gets up during the night & has to be coaxed back to bed. It seem she gets nite & day confused. directions

  - e.s.

• March 4, 2008 12:22 p.m.

  My mother is 90.She was diagnosed,based on a CT and psych. testing to be in early AD My brother and I have noticed changes in her behavior over the last 3-4 yrs, but figured,she is 87,88 ,etc. Our biggest problem,just developng over the last 6-8 wks is a refusal to get out of the bed. As we both must work,it's 3pm and I arrive to find her laying abed.We have hired people to stay but none have suited her, and she has refused to get up for them.Once up ,eaten and taken her meds,she's a different,happy person.Comments?

  - d.daughter

• February 27, 2008 9:47 p.m.

  My Father can't hear and sometimes I get loud and angry sounding, sometimes I am. He is 86 and wants to be the Boss. Yesterday he forbid me to leave the house for a week. Today he is docil. I am trying to remember the disease does it but it is very hard not to take it personlly Thnks for listening.

  - Pat

• February 21, 2008 7:40 p.m.

  Carrie, It is like living with a different person, everyday. You never know what kind of mood, they are going to be in, when they wake up. Hang in there, maybe this website will help.

  - Vonda

• February 21, 2008 6:26 p.m.

  I am so glad I found this site. I moved my Mother, who is 86 years old, in with me 6 weeks, ago. I can relate to each and everyone of you. I have one question, Does pain feel intensified to Alzheimer patients? We have made more trips to the Emergency Room, when we get there, she will complain of something completely opposite of what we take her up there for. Also, she will act like she feels fine, once you get her to the ER, also. Before you get there, she would act like she was in excruciating pain. Also, she will go to bed very early and lately has been pulling the shades up, so she can see outside all night. I don't know if she is afraid to go asleep or what. She is up and down all night long. Seems to me, like she is trying to keep herself awake. Take care and God Bless each and everyone of you.

  - Vonda

• December 7, 2007 1:00 a.m.

  Wow, I can't THANK you all enough. I found this place after a tough week. Mom has turned a corner and has become mean. I was hopeful she would stay nice and complacent as she has been. NOPE! not going to happen. Reading all your insights has helped to put this into perspective. We all have to stick together on this. I wish everyone some peace!

  - Carrie

• November 21, 2007 2:57 a.m.

  My father has been diagnosed with AD. He lives 300 winding Kl away.We are trying to move him closer to me as this is where all his family is. His partner died recently and he is feeling very alone where he is. We keep in touch by 'phone and some days he is fine and others he is cranky with me because I ask questions. But how else to find out how he is? There are not enough placements or Aged Care Workers anywhere it seems. I realy take my hat off to those of you who can care for an ageing parent. This is the guy who picked me up when I cried!! Talk about role reversal. I know we would drive each other mad in no time if he came to live with me.I could not be ther as I work fulltime to pay the bills. I try very hard to be patient and be happy ro repaet something for the 457th time without condeming. I have had some experience with people with Ad, but it so much easier when it is not you'r father.

  - Diana

• November 6, 2007 3:52 p.m.

  My wife has MCI (Mild Cognative Impairment). She most resents the frustrating confusion she often experiences when attempting to organize what for her had been a simple task, like addressing Christmas cards. Here memory is not like it was and most distressing is the sundowning experience of seeing people in the living room when there is no one really there. We've learned, over the past 8 mos., how to deal with these issues. I've learned not to try convince her that there is no one there when she is sure there is. Gradually she has developed some insight into her sundowning and can talk about it with some objectivity. We're both 71 and married 50 years this Dec. We've agreed to take this thing one day at a time and learn as we go keeping our love supple and our mutual caring as the foundation for the challenge. Our family doctor, our neurologist, and our priest (who is also a geriatric physician) and our son (who is also a sports medicine physician) and our 3 other kids are good help.

  - J Richard Hunt

• November 1, 2007 12:17 p.m.

  My son had AD and also Down's syndrome. keeping a sense of humour helped. and not sweating the small stuff. he also got up several times at night and I feared he would fall downstairs, or wander off. So we blocked the door to the stairs. After a few tries to open the door and get downstairs, he finally stopped. The sound of his efforts always wakened me so I would wait to see what happened and often did not need to help him return to bed. I found agreeing with him when he made outrageous statements helped. Correcting only upset him. When he wanted to go home, especially when he was home, i would just agree and say I shall take you home and that seemed to help. Arguing with a person with AD just upsets them.

  - Jean Cole

• October 31, 2007 10:43 a.m.

  I just started with this website and am so happy to have found it. My husband was diagnosed with dementia, likely Alzheimers, about two years ago. I was particularly moved by Sylia S's comment about how she feels her life is over. I don't know her situation, but I have learned that if I don't take care of me, I shall not be able to give my husband the care he needs from me. Hopefully there is someone available to relieve her and give her a chance to get out and enjoy some of those things in life in which she may be interested. I love going to the Symphony's Coffee Series and having lunch with a girlfriend which is wonderful therapy for me. If you let your life be over, it will be. I'm sure your husband would not want that for you. Syliva you are in my thoughts and prayers.

  - Patricia

• October 30, 2007 8:31 p.m.

  To be the caregiver for an AD (or similar) patient is extremely difficult. I have had to learn what is important and what isn't...in almost every situation I ask the simple three word question, "Does it matter?" and it is amazing how much doesn't. As for getting frustrated answering the same question, think about it...it's just as easy to answer it again as it is to say, "You've asked me that same question five times"...I don't mean to sound like I find it always easy, just the opposite, but maintaining a sense of humor, making him or her laugh, getting him/her out often to interact with others (we go out to eat every day) are some of the ways I cope. I continue to try to stimulate his mind as much as possible. Even though my husband doesn't recognize our house we've lived in for 25 years, needs help to get dressed, and is confused about so much, he is still the wonderful sweet man I married. And it is crucial that the caregive take care of him or herself.

  - Frances

• October 30, 2007 4:42 p.m.

  My Mother is said to be in early stages AD and currently living in her own home with daily care provided by myself and my sister, we live walking distance and alternate days so we have a day to ourselves. Mom is still herself in being very sweet and easygoing for the most part as long as we handle things carefully without making her feel pushed. The one thing that can be very difficult is the bath, she really hates to have to take a bath and I have heard other caregivers say the same and they also wonder what this is about. Well today I think I realized the main thing is she does not know what to do once I leave her in the shower even though I have given her instructions its too much to remember so today I stayed in the bathroom holding a towel up by the door for some privacy and gave her step by step instructions and things went very well, I should have realized she would need this since each night we have to instruct every detail of getting ready for bed.

  - Daughter

• October 25, 2007 8:47 p.m.

  My husband forgot my name today and asked me what it was. I told him Sapphire and you're Rastus. He smiled and said that he would find out who I was and check my papers etc. He is going blind from Macular Degeneration, no longer drives the car and doesn't understand much anymore. I am so fatigued from caring for him and am so disappointed with my former so called friends who now avoid us like the plague.

  - Marie

• October 25, 2007 2:25 p.m.

  My husband is in the mid level of AD. His memory is gone. He still asks if i need something from the store, but will often bring the wrong thing back. My frustration is very high and I dread where I'll be when he gets worse. I have a bad back and am often in pain while walking so my irritation is increased. I say I'm a mother, secretary, and wife last. I often feel trapped (I'm 78 and he's 85) and feel my life is over. I know that's depression & I'm already taking meds. I'm currently looking for a support group so I can vent some of my anger and frustration. Something he does drives me up a wall & I do get angry-- he will be sarcastic and say something that puts me down. Then I say "after all I'm doing, this is the thanks I get?" No birthday card, flowers or anything. I'm expected to make all the arrangements for everything, including calling the store to deliver wine. Some days I feel like running away, but I know the guilt of leaving would cause me more unh

  - Sylvia S.

• October 23, 2007 9:42 p.m.

  After working with Alzheimers patients for many years, I have learned the importance of watching our non-verbal cues, what we say with our eyes, actions and tone of voice. Reading non-verbal cues tends to be something the patients continue to pick up on long into the disease, even when they don't understand what we have said verbally.

  - Lisa RN

• October 23, 2007 5:03 p.m.

  Hi, thanks for this blog. I hope it continues. My husband has frontal temporal dementia with primary progressive aphasia, so he is globally impacted. It is imperative that I don't use long sentences, that I don't sequence spoken thoughts or requests and that I physically show him what I am talking about as I talk. I can say, 'Could you help me with??' But then I have to be direct. 'Pick up the...' 'hold the ...' or whatever. Giving choices doesn't work either. He can't remember them. Staying patient and keeping him out of trouble (without treating him like a child are my biggest challenges.) a note to the gal whose husband wanted to buy her a tool. LET HIM. It's no big deal and it makes him feel like he's contributed. You should see the back fence in our yard that my husband is building! hah! Thanks Debby

  - Deborah Luetkenhoelter

• October 22, 2007 12:58 p.m.

  My husband has dementia and the other day insisted on going to the store to buy something that he says will help me with my work. Well I tried to reason with him as I do not need food, tools, or anything. Since he was adament about going to the store, I decided to take him for a car ride in the hopes that he would forget the store, but he did not and when home went to bed angry at me and I think the world. What should I have done ? Aline

  - Aline Brennan

• October 22, 2007 9:06 a.m.

  When my Dad was in the mid-stages we realized he was like a 3 year old with the nonstop questions, understanding of what was going on, etc. Every time he asked a question we reminded ourselves that for him, it was the 1st time. And sadly, I would give anything for that time back. He's at the end stage now and I wish I could hear him talk like that again. At least he could still communicate. Plain and simple, it's a difficult time. Try to keep your sense of humor, use distractions, use labels and pictures on cupboards and drawers and for basic instructions.

  - Sophia