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  • User M007 asked: 2/27/2017 4:59:35 PM | Legal/Financial

    I have just recently had to acquire the title representative payee for my husband on social security disability. I looked through all the info in the literature and online. I am supposed to keep a record of the use of the $. Question is, I am his spouse who has now quit teaching to stay home to take care of him. We have a limited supplemental retirement $. How do I split the money spent on our food, house, bills, car, etc.? Has anyone else dealt with this?


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    • User Mimi S. replied: 2/27/2017 5:49:25 PM

      Do call our help line: 1-800-272-3900 Also repost on the Caregivers Section of the Message Boards for others who might have gone through this.

  • User Can't Remember S***T asked: 2/26/2017 10:02:01 PM | Family/Relationships

    I am just dx with early onset AlZ (age 59) also have PTSD from an incident several years ago. I have been able to "hide" my dx and memory/cognitive issues as a result of PTSD symptoms. Im happily divorced, 3 adult kids ages 29 33 and 37. The 29yr old and 37yr old live in the same city I do and we talk often. The 33yr old and I facetime almost daily so I can see my beautiful Granddaughters. I have not told any of my close friends or my kids about my dx. I feel like I am lying and living a deceitful life when they ask me what I have done for the day and I tell them something made up instead of telling them I"ve spent the entire day at the Dr.s office etc... I am not true to them or to myself and I hate this part of my life. However, I don''t know how I can tell my kids without them feeling like they need to take care of me. I live alone, have my 2 dogs, and for the most part I do quite well. How do I even start the conversation with them?
    I read some posts online and it just devastates the kids when they find out. I don''t want to do that to my kids.
    Any ideas would be so appreciated


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    • User Mimi S. replied: 2/27/2017 7:44:56 AM

      The name of the book is: The Alzheimer''s ACtion Plan. And relax. You might b years in Early Stage.

    • User Mimi S. replied: 2/27/2017 7:43:29 AM

      When i was dx''d, I told my kids together when I hd half of them together. They insisted, and I had planned to call the others immediately. All have been most supportive. And you will need that support. What was your process of diagnosis? Compare it to that described by Doraiswamy and Gwyther. Ask your librarian. Yes, you will need to find , most likely one of the kids, to have your Power of Attorney. Are you on meds? Do get involved with Best Practices. There are other things you can do to help slow down the course of this disease, including: (1) Sticking as closely as you can to a Mediterranean diet (with wine and nuts), which has been shown to help prevent/delay the onset of AD, and also slow its progression. See: Basically, it involves: - High intake of vegetables, legumes, fruits, and cereals - High intake of unsaturated fatty acids (mostly in the form of olive oil) - Low intake of saturated fatty acids - Moderately high intake of fish - Low-to-moderate intake of dairy products (mostly cheese or yogurt) - Low intake of meat and poultry - A regular but moderate amount of ethanol, primarily in the form of wine and generally during meal. To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they''re very good for you. Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I''ve seen plenty of products that contain olive and canola oils.) Avoid hydrogenated fats and trans fats like the plague. (I also take Omega 3 and antioxidants.) (2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset. (As strenuous as possible. Recent research shows such build new brain cells!) (3) Lots of exercise for the brain -- activities that involve learning something new. I''ve seen some reports that learning new things coupled with using a computer can be particularly helpful. (A variety is best. Figure out what stretches your mind but is not so hard you are frustrated.) (4) Socialization, doing things with friends and family. (Most of us do not do well in large and/or noisy groups.) (5) Plenty of rest. (6) NO SMOKING!!! and avoid air pollution as much as possible. (7) Do whatever you can do to minimize stress. (And take meds as directed.)

  • User allaloneandhelpless asked: 2/25/2017 12:36:35 PM | Symptoms/Behaviors

    I am new to these groups and don''t really know what to do or what I expect to gain. I am just feeling hopeless and don''t know where to turn. I don''t really know if I agree with my father''s diagnosis. It just came on too fast and progressing even faster. I am hoping that there is something else going on. I don''t have confidence in the doctors here. I have next to no help from my family.I feel like I am fighting a losing battle and not doing my best for my father. One thing I want to mention is that earlier in my father''s life, I believe he suffered from Intermittent Explosive Disease. I was trying to come to terms with some things that happened during my childhood and was looking for answers. I came across this disease and it sounded a lot like my father. I have tried to tell the doctors this but they won''t give me a chance. It may not matter. I will say about a month ago or less, my father was walking with assistance, standing and ambulating just fine, then all of a sudden he could not bear weight and they do not feel there is any point in doing physical therapy even though there have been times that my father has moved from one place to another on his own. So here we go.

    In 2014 I noticed that my father started shuffling when he walked. I had read that walking like that was connected to dementia. I dismissed it because just 8 years prior I had gone through this with my mother . Then he started confusing seasons and time of day. He started forgetting the word for what he was talking about. In January 2015 I discussed my observations with his doctor. I was ok because he had a checkup in the summer of 2014 and was tolf he was in excellent and the mini test they give seniors to determine if they have mental issues was good so you can image after we talked, my surprise with my dad''s behaviour. He felt someone was getting in the house and stealing his tools because he could not find them. He repeatedly called the police to report the theft. He insisted I drive to a dealership where he did not purchase he car to ask why they gave the keys to a person we called "the man". He put locks and chains on all the doors and kept his things on a cart that he kept in his bedroom. He started hallucinating. At that time he was 95 and in excellent condition except for his mind. After back and forth with the doctor, his supervisor put my dad on 25my of seroquel at bedtime. He had horrible dreams so I cut the pill in half and sometime fourths. While on seroquel my dad was back to his normal self. The things he was doing started very suddenly. It was like someone flipped a switch. At that time he would threaten me but not harm me. One night he shot a gun in the closet ajacent to the bedroom I was sleeping in. He said he did it because he knew the man was in the closet. He talked to the man and himself. He did a lot of babbling and having two way conversations according to my brother. I never witnessed that. After 1 month my father refused to take it anymore sitting horrible dreams and dizziness. I was afraid the behaviour would start all over again. Surprisingly it did not. For an entire year my father was his old self. He did not many of the things he did. In October 2016 it started again but this time he was violent. After several episodes the hospital did a TDO and he was transferred to a facility where they said they would regulate his medicine. From the reports from staff he was doing great with occassional bouts of anger. After 2 weeks they sent him home. They put him on 1/4 seroquel morning 1/2 dinner and 1/2 bedtime. He was no longer combative. They said he was mild to moderate stage. Recently I told his. doctor it was not working as well as the first time. He has the occassional anger spells which bothers me because I now have home health care. After a 2 day hospital stay he became unable to bear his own weight. It takes 2 people to transfer him from bed to chair and vice versa. I did not know loss of motor skills was a side effect if seroquel is what is causing it. He has been sleeping a lot but the last 2 days it became really bad. The help was unable to wake him this morning so I just let him sleep until he was ready to wake up which was 10 am. He goes to be at 7 pm. Normally he sleeps a few hours and spends the rest of the night mumbling except the last 2 days. The last 2 days he has been sleeping uninterrupted. Today I could not wake he enough to get him to eat or take his medicine. Is this normal progression? Has he jumped from mid to late? Is the seroquel causing this? The hospital put him on Remeron which I thought was for sleep not the seroquel.


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    • User jfkoc replied: 2/26/2017 5:49:17 PM

      I hope you will join us on the Caregivers forum....

    • User Mimi S. replied: 2/26/2017 8:43:26 AM

      Also compare his process of diagnosis to what he should have received aa detailed in "The Alzheimers Action Plan" by Doraiswamy and Gwyrther of Duke Univ.

    • User Mimi S. replied: 2/25/2017 6:26:00 PM

      I would suggest you copy and repost this on the Caregivers Section of the Message Boards. You could also call our help one: 1-800-272-3900.

  • User C-LaV asked: 2/25/2017 1:23:05 AM | Working with a Health Care Team

    My grandfather recently moved in with my wife and I. We are about 2 hrs from where he used to live. I know he saw a neurologist and neuropsychologist twice almost 2 years ago and they both said he displayed signs of early onset Alzheimer''s and dementia. Now that I am in charge of his care completely, what would be the best types of doctor(s) or specialists to take him to? I feel like getting a more thorough diagnosis and continual check-ups may be beneficial but being new to all of this I am not sure what is best or where exactly to start. His new primary care doctor just prescribed Aricept and he is was already on Namenda as well, but he didn''t suggest any type of neuro or psych Dr.


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    • User Mimi S. replied: 2/25/2017 8:02:28 AM

      Hi C-LaV, I would suggest asking for an evaluation from a good diagnostic center such as a teaching hospital that has a dementia department. Records from his first diagnosis and any further labs should be sent there. It would probably be wise to have another neuro-psych done just for comparison. I think it''s important to be seen regularly by a neurologist whose main practice is dementia. It''s unusual for Namenda to be given without also taking Aricept. And the type of dementia should be determined as much as possible, before any meds are ordered. Do get him involved in what many of with dementia call Best Practices: There are other things you can do to help slow down the course of this disease, including: (1) Sticking as closely as you can to a Mediterranean diet (with wine and nuts), which has been shown to help prevent/delay the onset of AD, and also slow its progression. See: Basically, it involves: - High intake of vegetables, legumes, fruits, and cereals - High intake of unsaturated fatty acids (mostly in the form of olive oil) - Low intake of saturated fatty acids - Moderately high intake of fish - Low-to-moderate intake of dairy products (mostly cheese or yogurt) - Low intake of meat and poultry - A regular but moderate amount of ethanol, primarily in the form of wine and generally during meal. To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they''re very good for you. Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I''ve seen plenty of products that contain olive and canola oils.) Avoid hydrogenated fats and trans fats like the plague. (I also take Omega 3 and antioxidants.) (2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset. (As strenuous as possible. Recent research shows such build new brain cells!) (3) Lots of exercise for the brain -- activities that involve learning something new. I''ve seen some reports that learning new things coupled with using a computer can be particularly helpful. (A variety is best. Figure out what stretches your mind but is not so hard you are frustrated.) (4) Socialization, doing things with friends and family. (Most of us do not do well in large and/or noisy groups.) (5) Plenty of rest. (6) NO SMOKING!!! and avoid air pollution as much as possible. (7) Do whatever you can do to minimize stress. (And take meds as directed.)

  • User zainebzbir asked: 2/24/2017 9:02:45 PM | Family/Relationships

    It''s been three years since my mom was first diagnosed with familial Alzheimer''s , she was 49 at the time, I''m 22 years old and there''s a 50 percent that I have it . I''m scared i really am terrified to find out whether i have it or not . My dad and I are the caregivers of my mom ,in the course of 3 years she went from stage 3 to stage 6 of Alzheimer''s and it''s extremely Tough to process all this at once . It''s so tough to the point where I''ve found myself here on this site trying to seek some advice and help . I unfortunately live in Morocco , I''m Moroccan , But see in my country not a lot of people know about this disease actually in my country if you tell someone you''re seeing a psychiatrist they''ll think you''re crazy , Let alone telling them about Alzheimer''s .And i''m really sorry because I lied about where I live in my profile but that''s the only choice i had , I used to be a very outgoing person now all I want to do is sleep . There''s no one i can talk to


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    • User Mimi S. replied: 2/25/2017 8:09:31 AM

      Welcome to our world Zainbzir. I''m so glad you found us. I would suggest you call our help line 1-800-272-3900 and ask to speak with a Care Consultant. Perhaps she knows of some organization in Morocco that can help. Certainly all who are dealing with dementia worry about the next generation. In actuality, there is little you can do a bout your gees. Even if you are tested and a certain gene found, there is no certainty that you will get the disease. The best thing you can do is adjust you life style to follow Best practices: There are other things you can do to help slow down the course of this disease, including: (1) Sticking as closely as you can to a Mediterranean diet (with wine and nuts), which has been shown to help prevent/delay the onset of AD, and also slow its progression. See: Basically, it involves: - High intake of vegetables, legumes, fruits, and cereals - High intake of unsaturated fatty acids (mostly in the form of olive oil) - Low intake of saturated fatty acids - Moderately high intake of fish - Low-to-moderate intake of dairy products (mostly cheese or yogurt) - Low intake of meat and poultry - A regular but moderate amount of ethanol, primarily in the form of wine and generally during meal. To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they''re very good for you. Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I''ve seen plenty of products that contain olive and canola oils.) Avoid hydrogenated fats and trans fats like the plague. (I also take Omega 3 and antioxidants.) (2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset. (As strenuous as possible. Recent research shows such build new brain cells!) (3) Lots of exercise for the brain -- activities that involve learning something new. I''ve seen some reports that learning new things coupled with using a computer can be particularly helpful. (A variety is best. Figure out what stretches your mind but is not so hard you are frustrated.) (4) Socialization, doing things with friends and family. (Most of us do not do well in large and/or noisy groups.) (5) Plenty of rest. (6) NO SMOKING!!! and avoid air pollution as much as possible. (7) Do whatever you can do to minimize stress.

  • User PURPLE FOR MOM asked: 2/24/2017 8:11:02 AM | Care Options/Transitions

    My mom is currently staying with my sister out of state because she has been the one with the most flexible work schedule and seems to have the most patience. My other sister and I are trying to help out in whatever way we can since my father passed away last week but we reside in different states. My sister brought mom to Texas from mom and dad''s home in Florida but that was going to be temporary while my father was recovering in the hospital and re-hab. My sister is doing the best that she can trying to keep Mom happy but she is afraid Mom will get hurt due to wandering and just following my sister closely into dangerous situations(my sister lives on a mini farm). My mom is still very functional most of the time but in the times she is not she is a handful. My sister thinks that it would be best to get Mom into a home while she can still make friends but my other sister and I feel so bad about that arrangement at this time. This situation is all so sudden for us and we just do not know what is best for Mom and what we are able to do.


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    • User Mimi S. replied: 2/24/2017 6:07:33 PM

      Welcome Purple for Mo, Reading your post it''s sometimes who is on which side.I''m glad you are talking things out. I, personally, see many benefits to a Continuing Care Community, if family finances make it a possible First, you must look carefully at many factors before making a final decision. Make several visits, all unannounced except the first. Ask about staffing and turnover. What training and updating do they receiver? Do the names Teepa Snow and Naomi Feil ring a bell. Would you eat the food? Are patients in street clothes? Are patients sitting around elevator or nurses desk dozing? Check state. Is there a patient advocate? What activities that include physical and cognitive are offered daily? Some advantages. Someone is still in the Advocate role but thqa person gets to sleep. Hopefully staff are well trained and offer physical and cognitive exercises, daily. It''s difficult to get good socialization when caring for a person at home, unless something like Adult Day Care is used. Do go to Messagr Boards and ask more questions Do also read for a while.

  • User ladyzetta asked: 2/23/2017 8:54:58 PM | Care Options/Transitions

    I had to place my husband in a memory care facility 2 months ago. He is 87, I am 71, I was not able to give him all the care he needed, I go see him every day I miss a day maybe once a week. He makes me feel so bad he cries and wants me to take him home. He loves all the caregivers there but he keeps telling me he wants to go home. His physical needs are what I needed help with his mind is still pretty good. I am not a caregiver and I feel I should have tried harder. He has dementia and I cared for him 5 years with the last year being the hardest. He had a hard time keeping his balance and had started falling and refused to use a walker, he said they were for old people. His Doctor said he needed 24 hour skilled care so that helped me make the decision of placing him in memory care. I just feel guilty I was not able to keep him home.


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    • User Mimi S. replied: 2/24/2017 8:08:20 AM

      Welcome to our world, Ladyzetta, Try not to give in to the guilt you are feeling. You did the best you could for a number of years. Both you and your doctor agree you were no longer able to care for him at home. As the disease progresses, the patients concept of "real time" retreats. So his concept of what year he is living in may b years prior. To check this out next time he asks to go home, ask what he would do if he were home. Listen carefully to his response. Is it a present day wish or from the past? And you don''t have to be there every day. Or your visits can b e shorter. Think about when he starts is on the I want to go home? Perhaps you can leave while he is engaged in an activity. Do check out the Spousal Board on the Message Boards.

  • User Sheila25 asked: 2/23/2017 10:33:40 AM | Care Options/Transitions

    My husband fell 4 months ago and had a bad brain bleed. Since then he has had steadily declining cognizance. His problem is being diagnosed as dementia. He is in a rehabilitation facillity that wants him moved to a skilled nursing facility. I have looked at some skilled nursing facilities and think he would be better off at home for the time being. My family is dead set against me bringing him home. Could I get some opinions? Many of you are providing home care and surviving. Please help. Sheila


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    • User ladyzetta replied: 2/23/2017 9:14:25 PM

      Hi Sheila, I just posted a question like you did. You need to do what''s best for your husband and you as well. Two months ago I placed my husband in a memory care facility. He gets the best of care the caregivers are so good to him he gets so much attention. He would much rather be home but I was not giving him the care he needed. If you don''t take care of yourself you will not be able to care for him. I go see my husband every day and it warms my heart too see the way he is cared for. if you read my post you will see what I am talking about. A caregiver needs to be a very caring person with a lot of patience. My husband has those types of people in his life caring for him now. Take care of Yourself. Hugs

    • User Mimi S. replied: 2/23/2017 6:13:46 PM

      I assume what cafre he will need has been discussded with you and you feel it can be done. You might want to repost this on one or both Caregiving and spousal message boards for more feed back.

    • User strongforthem replied: 2/23/2017 11:26:50 AM

      Hi sheila, My mom has dementia and in the past she had a blood vessel rupture in her brain, something they couldn''t fix surgery without risking damaging her further. She currently lives at home with my father who is her primary care giver, I help and am also her POA and tend to the paper pushing and planning of he day time care givers she gets. She cannot be home alone. Taking your husband home will be strictly your decision. The only piece of advise I can give is if you bring him home, keep in mind it''s stress on you. Also, I guess make sure he has the care he needs, and the support system you''ll need. Otherwise, follow your heart and do whats best for him but also for you. Good luck and take care.

  • User Susan13 asked: 2/23/2017 7:20:45 AM | Care Options/Transitions

    I had my husband evaluated and at the time he was drinking, now I have him down to 3 glasses of wine a day. But all the doctor saw was an alcoholic, I know it does not help but where can I get help for the other symptoms?


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    • User Mimi S. replied: 2/23/2017 7:57:17 AM

      I''d suggest taking him to your closest large University or Medic al School complex with a Dementia/Alzheimer''s Department. And his drinking may have a bearing on the diagnosis. Good luck.

  • User Imsad asked: 2/22/2017 6:06:37 PM | Symptoms/Behaviors

    MDH sleeps from 10:00 at night unti noon or 1:00 PM, he then naps on and off. Is this normal behavior for an Alzheimer''s patient? Can the stage be determined based on this amount of sleep?


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    • User mrsbob replied: 2/23/2017 1:01:12 PM

      those are the same hours that MDH was sleeping. He is in stage 5. I talked to his PCP, who is in touch with his neurologist. They weren''t concerned but suggested that I start waking him up earlier. Now I get him up at 9 every morning. He still naps off and on during the day because all he does is watch TV. He seems to be a bit more alert. Hope this helps a bit.

    • User Mimi S. replied: 2/22/2017 6:13:51 PM

      No, but at end stage, the behavior would be not be atypical. Do put stages of dementia in your browser. That should give you a general idea. If MDH is not at end-stage, do discuss with your doctor.

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