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• August 6, 2011 10:17 a.m.

  My Mom who is now 84 has over the past 3 years slowly developed AD to the extend where her personal hygiene has become a problem, a great cook previously, now makes a cup-of-soup and a slice of bread for her main meal, no longer has proper conversations or does projects she would have previously done. Burns food & leaves pots on the stove to burn out. She lived in a retirement village and was also seeing less of her friends mainly because they were avoiding her, because she would repeat herself all the time. She would call us regularly to say she was bored and unhappy any time of the day or week. We would fetch her mostly over weekends when we were able to. My sisters who live further away & I felt she could no longer care for herself and advised her that we needed to move her to a place where she could be cared for properly. We found a home and moved her 2 weeks ago. We repeated what we were doing constantly yet everyday it was a surprise to her. She is now in a home looking healthier cause she is eating properly and has constant companionship but is angry & bitter & threatens to run away if we leave & cannot understand why we moved her without her permission, because she was happy and was able to look after herself. She makes me feel extremely guilty and I am thinking perhaps we have done the wrong thing. All the family are saying we have done what is right. Is this a natural feeling I am having and how should I deal with this & the threats and her

  - Bev W

• July 18, 2011 5:02 p.m.

  My friend, I call her by her Finnish first name Tuula, shows all the typical memory problems related to the early stages of Alzheimer's but only when she speaks and thinks in English. When we change our language into our native tongue her ability to function normally returns including her sparkly mood. Not only does she remember her youth in Finland, but also what she did yesterday. So we have two different Tuulas; one has a mild Alzheimer's, the other appears to be perfectly normal, but only in Finnish. Thank you for your excellent Alzheimer's E-Newsletter.

  - Maire

• March 9, 2011 10:22 p.m.

  My Mom is currently in hospital after suffering a brain hemmorrhage. She has been gradually deteriorating over the past few years through dementia. She went deaf overnight a few years ago, and now due to the bleed she is no longer speaking, or seem to understand what i write to her..It is heartbreaking to watch her decline. She is like my child now. She needs help with feeding and every other aspect of living. She is going to be going on tube feeding through her stomach shortly and I wonder if this is the right thing to do, but can't bear the thought of her not getting nourishment...It is so hard to know what is right, especially when we can't communicate anymore..

  - Pam

• January 19, 2011 10:03 p.m.

  My grandmother is now bedridden and mom has to liquify all her food. The gift I gave her for the holidays was the ultra soft aloe socks for her feet. We also hung a multicolored glass angel from the ceiling fan for her to look at as she stares off in that direction often. She is our baby now, just making her as comfortable as possible until she lets go.

  - Laura

• October 24, 2010 11:06 p.m.

  This is in response to those who have had the experience having a relative who was very serious, lacking in joy, keeping problems to themselves and then being diagnosed with AD. My experience has been the opposite with a friend who was diagnosed with early AD (age 54). She was a department head, traveled exptensively, had a terrific sense of humor, happyily married.... AD does not seem to know a personality type, but I have not researched this topic. My comment is anecdotal.

  - Mary

• August 15, 2010 1:13 a.m.

  were, along with TV (The Big Valley, Gunsmoke and Bonanza) were what she looked forward to the most. She would watch TV with great interest and excitement and I tell you for sure, nothing got past her in these programs, nothing gave me greater pleasure than to watch her, watch her favorite show The Big Valley. I quit my job about 18 months ago because I didn't want to miss any time with her and I'm so grateful that I did because things have changed so drastically, so quickly. She went from walking, though slowly, talking, laughing, feeding herself and brushing her own teeth to becoming totally dependent, in just about 4 weeks time. For a time she would still say my name and a few other words and occasionally very short sentences. Now it is rare that she says anything and if she makes the attempt, I can usually not understand her. I am however figuring out certain whines, different tones, mean different things. She is now being fed through a tube, is having to wear diapers, oxygen, and has to be suctioned quite frequently. She suffers from frequent bouts of pneumonia and has a lot of edema. I realize that my time with her is very short now, but she still smiles at me when I walk back into the room after doing whatever chore was at hand. What in the world will I do when I can no longer see that smile. God has blessed me so with her and I never will regret the challenges of taking care of her at home. I'm just grateful that I was able too. God bless you all.

  - Sondra

• August 15, 2010 12:40 a.m.

  I have been a nurse for just over 30 years now and have seen and cared for patients with terrible diseases and horrific traumatic injuries, but I really must say that I believe that Alzheimer's is the most cruel. Perhaps I feel this way because of my beautiful sister, now 51 years old. She has Down's Syndrome and has without a doubt been the light in our lives. She lived at home and attended special schools for 18 years. She was never able to learn to read or write, but could recognize letters, copy them, spell her name and count to 100 with a little assistance. What she didn't comprehend academically, she compensated in other aspects of her life. She was very smart and intuitive, always so loving, very kind to everyone and extremely thoughtful. We have always been very close, she is only 17 months younger than I am, and I have always been her protector. Though I have 2 older siblings it was always understood that Bonnie would come to me when the time came. Now I have both my mother and my little Bonnie. Three years ago Bonnie was diagnosed with early onset Alzheimer's. I say it is the most cruel disease, because it is. This vicious disease has advanced rapidly and has robbed her of everything of everything she looked forward to in life. About a year after her diagnosis her memory started to really deteriorate and her appetite diminished significantly. She lost pound after pound, the caregivers that came while I worked couldn't get her to eat. Oh my, food, coke and ice cream

  - Sondra

• August 4, 2010 1:58 p.m.

  Florence It is not easy coping with a family member who has early onset Alzheimer disease. My husband was diagnosed 4 years ago with Alzheimer at the age of 57. He has a hard time getting out the words he wants to say. I have gone to support groups.They have guided me in the right direction. They have taught me how to cope. There are days that are so sad but I live for the moment and the great memories we have shared. We will be celebrating our 40th anniversary this month. He has absolutely no idea. We will go out for dinner has we have every year. It is not easy to accept what you cannot change. Lucky for me my husband is an easy going person. I have no idea what will happen in the future. I just live day by day and try to enjoy the moment. I want to keep him as happy as I can.

  - Sue

• July 2, 2010 12:27 p.m.

  After falling and going to rehap after hip surgeries, my mom was put into an Alzheimers' Assisted Living facility. Even though I believe and am told by many nurses, aids, family members and the doctor on staff, that it is for the best for her and I, still the "GUILT" remains, since we always told her we would never put her into a home. A nursing home alone is not where I would have put her even though it is an option, due to her cognitive reasoning still available in her case, we chose this Alzheimers' facility where she is able to continue to think and be with others in her same condition. There are loving and caring individuals there for her every need. It is expensive, about $3300.oo a month, but until $$$ runs out for us, she will be able to stay there. My problem is this: What will I do when the money runs out? that is where the guilt comes in. Right now we think we can handle maybe another 2 years but after that, what? Nursing home that takes just social security moneys? Any ideas? Thanks for listening.

  - Karen

• June 6, 2010 11:51 a.m.

  I am 90 years old and my son who is 62 has been diagnosed with early onset alzheimers. He has early memory loss and has trouble with communication and only able to speak a few words of response. My heart is breaking and more than I can bear to watch hius decline to be more child-like. How do I cope?

  - Florence

• May 28, 2010 1:51 p.m.

  As summer approaches, I'm finding there appears to be a correlation between a lack of clarity in thought processing and focus, alongside the stressors of dealing with warmer weather. Even simple decisions made by the individual with dementia appear to be less reliable or safety conscious when temperatures are higher. Is this coincidence or do others find the same is true?

  - Anonymus

• April 16, 2010 7:07 p.m.

  for i know at that time god calls her home that god is giving and teaching me all along that it not hard to lead others along as long as u follow with him in mind peice is allways with u in your mind then u dont have to ask how do i cope with with this god has shown me everytime so i say remember the lord as u go along and guidance will be there love conqeres all and god will bless you through it all god i thank u for for my mother in law for u have blessed me in this way . be there for those who do not see the blessings there are for those who look out for those with this disease mom in law i love you so much and i feel your hurt at times my god be with as we try to think of only happy times amen. people its not work its a responsibillity its all in how u look at it it will try u yes it will but keep in mind how u would feel being all alone scared and confused have much more i would like to say hope i helped u in understand just love them and agree make them happy and god takes care of the rest dont ignore them or angery anyone u dont like it and they dont either be caring

  - charles

• April 16, 2010 6:32 p.m.

  the key to keeping the piece is to listen and agree and also observe the mood changes as they change i have been keeping a mental record of her mood changes day to day and evaluating her reactions from one person to another and watching the different tactics that each family member uses to comunicate with her. and how they try to correct her mistakes along he way in the nicest way thy know how all long i would just agree with her and speek of things that i knew made her happy in the times she was giving a mouth full to all the others i would simply give her what she loved the most it was simple a cupcake an a cookie or cup of coffee and ice cream and she would look at me and say come here bubba give me a hug i dont know what i would do with out u laugh as i guided her from the place she got angry an onto the deck and talk to her about the good lord and how beautiful the trees and birds and all he created was and she would say thats right and t this day hasnt lost faith in me and hasnt failed to trust me not one time im honest with her help her finish out her stories and steer her with the tought in the back of my mind that if god had me travel this road how would i like it to be done knowing in my mind that my days where numbered and that it is my duty to walk her down a path of pease and block out all the angry hurting things that cause her strife so she may enjoy the rest of this great gift we all call life and when the time comes and the lord calls out i will know she won

  - charles

• April 5, 2010 10:07 a.m.

  I have been reading entries to this blog for over a year now and I have received some excellent ideas to help me cope with my mother's AD. My father (in his 80's) is her primary caregiver and as I have been posted overseas my direct contact with them is limited. The telephone and email has been our lifeline for the past 3 years, but recently a friend convinced me to install a webcamera and try to get them to do the same so that we can set up webconferences using Skype and see each other as well as hear each other. The quality of the conversations with my mother has improved dramatically - we speak every other day now and we have started to share new activities together. I read her short stories and her laughter at my vocal tones to portray different characters is so uplifting. I'm not sure that she understands all of the words, but she is definitely engaged and interacting with me more than during telephone conversations. For me it also helps to ease some of my guilt at not being there - because now we both feel like we're connected again. An added benefit is that our time on the webchat enables my father to have a break and do some of the things he'd like to do without worrying about my mother being ok. I'm sure this may not be the answer for everyone, but for those family members that are at a distance - it may be worth a try.

  - Pam

• April 1, 2010 4:22 p.m.

  I am reading this blog for the first time.To Nancy-My Mom had AD and she was a very task oriented and serious person who had trouble finding joy in and enjoying life. I too,often wonder how much that affects our minds and the development of AD. Not to hold anyone responsible for contracting this ugly disease, of course.I am sure there are many joy-filled,happy people with AD,also. But it certainly can't hurt to stop and experience the joy in life as much as possible every day. Then no matter what our future has in store,I lives will be happier!! Also, I am caregiver to an AD patient who,unlike what I am used to seeing in most AD sufferers speaks almost no words at all. He is still able to assist in his own care,such as helping dress,feed himself,etc. He is very mobile and still physically very healthy. He was diagnosed about 10 years ago. Most AD patients(at least in my experience) are more likely to speak incoherently or about things that are disconnected or unrelated. Has anyone experienced this almost total lack of speech of any kind?-K.G.

  - K.G.

• March 30, 2010 10:29 a.m.

  I am responding to Merry. You sound like you are in so much pain. I feel so bad for you. I hope you can find a way to channel some of your pain in to a positive outlet. I do know that everyone deals with this disease diffrently, just as the disease progresses diffrently in everyone who is suffering from it. My mother has it . My father said "Maybe not enough is known about Alzheimers, after all it is an old persons disease." The fact that some people in our society think that older people have nothing to offer is a terrible fact in our country. We should honor the elderly and learn from them. As much money that goes to other diseases should also be spent on Alzheimers research. To everyone out there reading this, help with Alzheimers research. Do Alzheimers walks. Maybe then can Merry get some answers to her questions.

  - Betty

• March 23, 2010 9:59 a.m.

  My step-mother (86) was diagnosed with AD about 4 years ago. Her short term memory is gone. My father (86) has been her sole caretaker, making sure she dresses & eats. She has become extremely difficult, yelling at him, refusing to leave the house & getting angry if he goes outside. In the past, I always got along with her, just fine. Now, my dad is very ill. He just got out of a 3 week stay in the hospital and currently is in a nursing home. My step- mother is very angry & lashes out, in particular, at my aunt & me. She calls me horrible names, calls me a liar for no reason, and tells me I will never see my father again. The worst was she physically attacked me because I gave my dad a hug goodbye. All these things happened n front of my dad, while he pleaded with her to stop hurting me. At this point, I go to visit dad when I know she isn't there, trying to keep conflict away from him. He said he can’t even mention to her that my aunt or I visited him (how does she remember she doesn’t like us?). My dad has decided he is going home to take care of her. The doctors believe he has cancer & is not well enough to take care of her. I tried to talk to him about an Alzheimer’s Unit He cries & says he can't put her in a place. Keep in mind; she refuses to let anyone in the house to help, except her children. I am afraid of her after her attack & will not be able to go to the house to help. I will not be able to see my dad. This

  - Sharon

• March 16, 2010 1:26 p.m.

  what a wonderful story about your grandmother and her memories about when she was sixteen, i am sitting in hospice with my dying dad and my alzheimers mother. does anyone have experience with this situation?

  - jen

• March 12, 2010 10:45 p.m.

  I just lost my husband to Alzheimers. I can't understand how that happened. He had a rapid onset with a complete meltdown on January 16, 2008 and died on December 23, 2009. Physically, he was very healthy, so what caused his death? Nothing I read about AD prepared me for this. Everything indicated that, although it was fatal, it was ten to fifteen years down the road. His was less than two years. He had the best recommended treatment of Aricept and later Exelon patch, but continued agressively to lose skills. I never considered putting him into a nursing home although he could not be left alone for a minute, had to be fed, cleaned and dressed. His doctor called Hospice in and I was shocked that they were called because I knew that they were called only when the end of life was near. My husband's vital signs were good and he was awake just two days before he died. Hospice saw him only three times before he died. We were married fifty-four years and he died at seventy-six. I am still going through withdrawl of being without him. I am not going to go on about what a wonderful husband, father and person he was because that is a book in itself, and I can't talk yet about how horrible I observed those two years must have been for him with the awful things he thought he saw, what he thought was going on, and how chaotic, confused and warped his world must have been. As helpless as he was, I felt helpless because the information about AD was completely usless and irrelevant to him.

  - Merry

• March 1, 2010 9:46 a.m.

  This note is in response to Nancy's comment re:AD being related to the attitude of the spirit. My mother appears to have AD and is much like the people Nancy mentioned. She has had much bitterness, unbending, unforgiving, and mostly negative. She found it difficult to laugh and have fun or to express love. This site is helping me to get informed and giving me coping skills. Thanks to everyone.

  - Kay

• February 22, 2010 9:05 p.m.

  My mother died from Alzheimer's two years ago. No, it did not kill her outright, but she would not eat or drink. My elementary school age daughter (adopted granddaughter) and I cared for her. She was not the best mother when I was a child but when I was a young single mother she always helped me, giving me $5 or picking up my children so I would save on babysitting while I worked~for that one day. We had her for five years. My daughter and I took wonderful care of her. We coaxed her to eat, just one scrambled egg mom; to drink. But this is not just her story, it is mine also. At 63 I thought my memory problems were the beginning of alzheimer's. OF COURCE I DID!! I had an 11 year old to finish raising. What was I to do? I got out the phone book and went to a neurologist who specialized in Alzheimer's. I wanted the Aricept. I wanted to do anything I could to delay this debilitating disease from taking me away from my girl. After testing he was on the border but I felt that if I took the aricept and did develop alz, then I would have done what I could. If I did not develop it, then what would be hurt. Within 6 weeks both my daughter and I could see A GREAT IMPROVEMENT, primarily in word retrieval and memory blanks. Do not be afraid, ashamed or hide it. Do what you can. Suduku. Water aerobics. vegetarian/we have been. Now I am taking Axona! We are learning french and taking trips now; france later. HELP YOURSELF, LOVE YOUSELF NOW.

  - Gailanne

• February 16, 2010 12:26 p.m.

  Today I found this site. My mom has ad and lives 2 houses away. I give her meds and she eats at my house. I'm glad I read the blogs. I get so angry at times. I am 49 and she is 74. The problem is my health. I have sjogrens disease. I have trouble walking and can't do steps. I have a stairglide to help me. I worry about when she gets worse how I will be able to take care of her. Thank you, Karen

  - Karen

• February 6, 2010 12:19 a.m.

  This is in reply to Nancy. Thank you for writing about your idea that perhaps AD might be caused by a disorder of the spirit. I have wondered the same thing. My husband has AD and lives in a nursing home also. I have watched him deteriorate over the last 50 years from a beautiful, intelligent, even charismatic man to someone who can no longer even speak. Before his illness he kept everything problematic to himself or appeared to behave as though problems didn't exist. He did not want to talk about unpleasant things and would never admit that there was anything wrong with him at any time during the illness. I never thought this attitude was very healthy and now wonder whether it at least contributed to this illness in some way that we are unaware of at present. Reply to Joy: To me, your husband is exhibiting early signs of AD. Much of what you say is so familiar. You are not a "poor wife" because you react with anger -- it is normal. However, it doesn't do either of you any good. You must learn different ways of responding. The first thing to do is get him to a doctor for a diagnosis. Some illnesses mimic AD, and you want to be sure that is what you are dealing with first.

  - No name given

• January 15, 2010 1:54 p.m.

  My mother had Alzheimers and has since passed away. My husband now has Alzheimers and is in the nursing home. I have become very drawn to wondering why this happens in people. Of course I know that there are no conclusive answers to this. Nonetheless, it intrigues me. Since no one thus far has been able to explain why this happens, I have wondered if this isn't some disease of the spirit which somehow starts to cause a malfunction of the organic brain. In both the case of my mother and my husband as well, they came from older type philosophies of life which dealt with hardship and rather unbending personalities, which in my opinion did not give enough flexibility to helping them to move towards happier lives. My mother was a good woman, worked hard but pushed herself unmercifully whenever the dreams of her life failed to materialized, plus sometimes she became bitter over these things. My husband has been on the one hand very lucky in his life but has also suffered disappointments and emotional crisises on the other hand which it took him a long time to recover from. He is actually a very emotionally based person but with hard views and attitudes representative of an older, harder western culture. I have often wondered if the things we harbor inside our very spirit which hurt us or damage our psychic selves manifest later in life and make our brains malfunction, especially if our spirits become bitter or unbending. It is just a thought - not scientific.

  - Nancy

• January 15, 2010 12:17 a.m.

  Could someone -- ANYONE -- please help me? My husband of over 50 yrs has been exhibiting behavior that just doesn't fit who he's always been! I have no idea if he has any self-doubt about his functioning. He very often jokes about his poor memory, but I always tell him that all of us at our age have the same problem. He's always been a very proud person, and would never admit to any fears about slippage, even if he experienced them. His personality seems to change in the late afternoon and into the evening. He still insists on having his "happy hour", but he's nowhere near an alcoholic. Yet, after a drink or two, he becomes quite irritable and sometimes addresses me as though I were one of our 3 children, who are now middle aged adults. Math has never been his strong suit, but any situation that calls for reasoning, especially if it involves some arithmetic, really stumps him. His judgment, especially regarding our finances, seems to have worsened. Yet he still insists on handling our checkbook. He's become extremely emotionally dependent on me, but I've explained that to myself by the 2 major back surgeries he's had in the last 18 months. Sometimes, circumstances which don't even seem to me to be relevant to some activity that is expected appear to become very confusingand even t to him. I have been a very poor wife, as I've allowed myself to respond to much of this in anger. But when he says something hurtful, my fuse ignites before I can control it

  - Joy