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My husband has been on Aricept 5 mg. since June 18. I asked the doctor if he could stay on this dose as he seemed to be ok and he said increase at your discretion, if he seems worse, up it to 10 mg. the last few days my husband's actions have changed. Our son and family were over Sunday and my husband was for the most part very quiet and didn't join in. I felt sad and guilty for not paying him more attention but welcoming the joy of the grandchildren being there. Yesterday I don't think he said a complete sentence until well after lunch and seemed better by evening. My husband just came from the bedroom very confused, he thought we were being beaten up by the Japanese and went back to bed. I spent time out in the yard working and crying at the princess I felt. At other times I can cope with things but the alternate with sadness, crying and wondering how much he is suffering, or is it just me, and what to do about it. Sorry for the rambling, just had to put my feelings in writing. Does anyone out there have these same feelings and how do you handle it? Thanks listening. Should I increase aricept to 10 mg at this time. (I feel the doctors answer was, in effect, it probably isn't that crucial what dose, so go with the flow, no disrespect as I do like this doctor)

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My wife of 31 years is now in a hospital for evaluation for placement in NH. She has had Alzheimer's for 5 years and progressively became violent at times where she threw things, threatened my life and many other things that are common with dementia patients. She was always someone who like to control what was happening or being center of attention which started after our wedding. She worked in different jobs and was very intelligent and learned her jobs and did great at them. When this came along and she became the way she is I became angry at the disease but had to keep alert to her actions and it would seem like someone would flip a switch and she would go off. She is now being treated and the doctor their has increased her meds and they say she is doing better but still has behavioral problems. I visited her yesterday and she is on the listless side which is a reaction of the meds and the new one Aricept. So, as my dad would say go with your gut feeling. I did not want to send my wife to this hospital but it was for her well being. She was not taking her meds, not showering and not changing her clothing and getting worse so now she will get help. Yes we are their caregivers and and must make decisions on our own and pray we do right. I was an LPN for 18 years and took care of seniors with all types of problems dementia being #1 and with my knowledge of dementia all you can do is try your best. I have cried, hated my self for not doing a better caregiving but when the person you care for refuses help and belittles you or threatens you there's not much you can do. Best of luck and Gob bless you
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It is so helpful to hear from someone who's spouse has this terrible ALZ there is never anything as bad as that as I need all the help I can get THANKS
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Thank you to Loretta Mae. You have expressed exactly how I feel. I am losing my husband who was my protector and now I have to be the strong one all the time. We were equals and enjoyed our lives as such. Now I just am having such a hard time because he is a child. He wants me to do everything for him. I get so tired and I don't like to complain because I have a good life. Even so, nothing prepared me for this. It is totally different from watching my dad die of Alzheimer's. It is much sadder and harder to deal with.
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I don't live with the man I married anymore. Sometimes I get a peek at him and then often there's this different person. The different person holds grudges a long, long time. He can't name them, but they come out in his attitude and actions. He'll sabotage something I've worked hard on without seeming to care.
He guesses what I'm thinking but doesn't ask. He makes decisions based on those guesses and assumptions. But he doesn't ask. And he's often wrong because he assumes the worst of me. We can't seem to have any important conversation, certainly none of personal depth because he isn't capable. Logic escapes him, though he thinks he's highly sensible. He's become an emotionally ruled person.
I lived through 6 years of hell with his Dr. Jekyll/Mr. Hyde transitions taking just seconds. Emotional and verbal abuse endured because he had dementia and was not well. Now he's changed again and is much calmer and significantly less abusive. He's more normal and capable...so what gives? What's going on? And who am I married to?
Sometimes he's actually nice to me. And that makes me wary. I occasionally get PTSD symptoms when he comes up behind me and surprises me by suddenly speaking. What road am I traveling? I thank God I'm not traveling alone! I can trust God a lot more than my husband. And that's just plain sad.
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Sometimes it is an overwhelming feeling, but as time goes on you learn to adjust. If you have not read it, get a copy of "The 36 Hour Day." My doc gave it to me, and some of it is very helpful. It does seem like we have 36 hour days sometimes!
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That is so very true. Today I am in tears because he wants 2 move 2 fl 2 get away from the winter. Obviously that is not even a remote possibility either financially or physically. When I try 2 explain I am the person who suggested it in the 1st place. it's a lose lose situation.
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Losing your husband or wife to Alzheimer's is a different situation than a parent or a grandparent another relative . When your husband or your wife has Alzheimer's you lose your best friend . You lose your lover , you lose your financial provider , you lose your protector, you lose your rock . I have taken care of three other people with dementia in my family; my mother-in-law, my aunt, and my uncle . End even though I had to change diapers and give bed baths and changing diapers, it was not as difficult as dealing with my husband who I am loosing day by day . When I took care of the other family members he was there to support me, to listen to me and even help me with the physical efforts I had to make. To lose my husband is the most dreadful thing I have ever experienced . He is there physically but he is not there mentally nor is he there emotionally or intellectually . He cannot understand when I ask him to do something I have to explain several times over and he cannot complete the job without being told how to do it . I am not complaining I just want other women and men to understand it is harder when it is your spouse that you are taking care of . You cannot later climb in to bed with someone and have them hold you and comfort you and tell you that it will be okay, that it won't last forever; because this is a forever thing. When it is your spouse they will be gone a little more each day and then finally all together. Then you are really alone because you yourself are elderly, frail, and given up any social life and friends to be with youw true love until the end.
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Wow, suslovecats,

I am so sorry! So young! So sad for both of you.

I was just going to take the opportunity to complain that everything with my husband takes so long. A half hour to go into the grocery store and buy butter.

But you have stopped me cold. My husband is 82 and can buy butter in the grocery store. I am grateful and sending you, all of you, a hug.
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Dear Bluecube Where did you purchase the personal amplifying device?
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This is Leakey just a update wife is in nh 2 month it is not home for her but knows she has to be there .she seems to die a little bit every day (I was there 2 hrs this afternoon went walk coffee etc then when daughter came later she did not remember that I had been there.that is the first.time for that) I can't help but cry every night when I come home I know it will only get worse .i go to support groups 2 of them also kids help a lot but when one is alone it's terrible.they have live bands 4 days a week and idle joy dancing but it's getting very hard for her but make it work.this has been a great site tobe on but sometimes nothing helps.she told a daughter that she hopes this does not go on long(how sad is that)the nursing home is great but to be around so many that are in wheel chairs sleeping and one knows that will come it's very depressing well so much for the doom and gloom will have to suck it up and keep doing what I can thanks for putting up but it does help to unload to people that understand
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Alzheimer's is such a debilatating disease. A 95 y..o. friend's (she just deceased) husband had this horrible disease for a long 12 years. Please free to come to site for comfort a lot.
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LuvRLabs2 and Grandmama215 - I also know how you feel but I have only been married 35 years and my husband is only 55. We have been struggling with him having Alzheimer's for 5 years and today I just couldn't believe that he didn't know what or where the toilet was. He just kept going in circles and kept telling me that I had better hurry but he just couldn't understand me and he was standing right in front of the toilet. His hearing is also affected but I can't tell if is just that he can't understand me or if he really can't hear me. We just took my husband off of all his meds because he was sleeping up to 22 hours a day. He isn't sleeping that many hours now but he has seemed more confused. I took him to Colorado last weekend to visit our oldest daughter and her family and the doctor seems to think that being in high altitude, which causes less oxygen to get to the brain, could have made him worse hopefully for just a short term but time will tell. I might get that "personal amplifying device" that bluecube has mentioned to see if that helps with our communication. It is sure helpful to see others are also having some of these issues and their suggested answers. Thanks everyone.
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Hi LuvRLabs2, I can relate to Your feelings. When My Mum was diagnosed with Alzheimer's in the fall of 2013, I cried My heart out for a whole month or more. When talking to Mum the tears would flow like a river, and Mum would ask WHATS WRONG JOHN, ARE YOU NOT FEELING WELL ?? And I'd say My teeth are very painful, You see Mum has not been told of Her diagnosis. I began to heal once I reached the point of acceptance, once I accepted that My darling Mother's brain was sick, and there is NO cure. I'm by Mums side 24/7 since, and be prepared it is very tough on Your own. Get help if You can, in My case Family just visit, They do not roll up the sleeves to HELP. I wish You and Your dear Husband peace.
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Thanks everyone!!!!!!!!!!!!!!!!

I also need to remember to "keep it simple." When it is simple and we communicate, I can see that he is really happy. When it gets too complicated, he is depressed, I am frustrated ,and we both feel bad.
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How I feel for you! I have been going through this for a number of years when my husband was first prescribed Aricept but he was really ok for quite a while. When we moved to be closer to our daughter and got a new doc Namenda was added to his meds. Which also seemed to keep things under control. In the past month or so however he has been on a downhill slide and even with a home care aide I have finally come to the point where I can no longer predict what he will or won't do. He needs all kind of daily help, from getting up, using the bathroom, even eating. So I have become resigned to considering respite care where someone will be on 24 hour duty seeing to his needs.
It took a long time to get to this point--more than 15 years (we've been married 62 years) so I shouldn't be concerned. However I know what it's doing to me, my health, my physical ability to handle his difficulties. I thank the stars for my daughter and a very close friend to help me with the problems involved with making such a transfer.
It's important that you maintain your health and call on family, close friends, whoever, to help you cope/handle the problem. Because he won't be able to do anything about it--and you know that.
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Dear LuvRLabs2: I am so sorry for your dreadful pain and distress and for the many losses you are already experiencing. There's a reason the experience of Alzheimer's (and other dementias) is often referred to as "The Long Good Bye". Your husband is NOT, today, the man you married 51 years ago and OF COURSE you are sad and frightened and angry and a whole lot of overwhelming emotions. I echo the advice above about continuing to come to this site to read, vent, learn and have available to you ears and hearts that are always open to all that is happening to you. Even better (in addition!) is if you could find a local support group for caregivers of persons with dementia. We have a local agency, Respite of Charleston, that provides respite care for our loved ones while their loving caregivers are attending a meeting professionally facilitated by people who also can give advice and comfort. Look for such a group in your community! As for the drug therapy, I don't think there are any "right answers" -- something we are all always seeking desperately. Each person experiences this dreadful disease in a different way. Some of the caregivers swear by these meds, others have abandoned them because of side effects. You just have to trust your own instincts and observations. However, another word about drug therapy -- for you! Be sure to tell your doctor what you are going through and ask for a referral either to a physician who specializes in "elder medicine" (even tho' you like your doc, s/he may not be the best caregiver for your husband OR for you) and/or a referral to a psychologist (also experienced in dealing with dementias!) so that YOUR needs for help can be evaluated and addressed too! Your beloved is not the same man, but he still is/can be someone with something to give back to you to help you on this journey. We call those "moments of joy" and we try to give them as well as experience them ourselves. Read as much as you can (Teepa Snow videos on line will be SO helpful; you may well be expecting too much of yourself!) and give yourself a pat every single time you are patient and cheerful because I'm convinced that is the way we ease our loved ones; minds, when see us as much as possible as finding some slice of happiness every day. God bless you and Angels watch over you and your husband! Lolli
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I am in the same boat with all of you. My husband of 52 yrs is in the middle stage of Altzimers was diagnosed in 2008, although he was showing short term memory loss for quite a while. I finally had to ask the doctor to give him a memory test. He started out on Aricept 10mg. once a day, after two years dr prescribed Namenda in addition twice a day. I have been giving him coconut oil in food for several yrs. it does help some with memory, and is good health wise. The sad thing is it doesn't restore brain cells.
He was a professional truck driver, still very good. But I have been "navigating" for a few years, his license has been suspended, last month. He is high functioning, but in the"moment" , doesn't remember a few minutes before so as you know it's " ground hog day" all the time. It wears you down, try to get a friend to come in, so you can get out, maybe get in a support group so you don't feel so alone, and they can validate your feelings. It's so very sad and wearing, and we miss them, the way they were. The books say the cognitive reasoning is last to go, so they can make sense in the moment, then forget how many children they have or even if they have grandchildren. You think you see your loved one as they were, then they are like a child. We do grieve for them and us. It's a terrible disease. Then how do you judge how much you can take? My problem lately is trying to get him in the shower, he'll go in and come out dressed. Very resistant to suggestion. Rather like a small child. And all the symptoms you all are dealing with. They are comfortable In familiar environment. But can be resistant to going anywhere. I totally sympathize... Remember caregivers can burn out and have serious health issues before the loved one passes. So don't let anyone judge you. When the time comes, consult your doctor and also counseler at an Altzimers care facility. To decide how long and when is the hardest decision. How long before our health.... What would we expect or want them to do for us. A waiting game....God Help us all
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My husband suffers from vascular dementia which developed slowly over several years. Sometimes he is very out of it, and he also became very unsocial. We have to remember that it's the disease, not the person. At some point, you might consider therapy. Now that my husband is also on hospice care, I am finding it helpful to talk with a therapist. I have known my husband for 40 years, and it is very hard to watch a once very functional professional person deteriorate.
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SYMPATHY! Yes we all deserve sympathy in copious amounts. Even though it is our husbands who are ill and suffering , we, too, suffer the constant loss and grieving...........like someone dies, and yet he is still here. It has been 10 years now for us. I would recommend getting him on Namenda also ASAP if the doc will let you have it. It seems to do more than Aricept alone. My husband is no longer on Namenda. I think it just isn't doing much anymore. My husband cannot carry on a conversation so he rarely talks to me. For me the loneliness is just awful. No one to talk to, confide in , communicate with. I just want to say I love you and hear it back in return! Rarely happens. But when it does, I treasure the moment. We are approaching the last stage. I wish it would end soon as it is all downhill from here. But I have resigned myself that I can do this. I can take care of him as long as he is not bedridden! I don't know how I will handle that. He needs help with every single aspect of living! It is exhausting and when he gets into bed at 8PM, still light out right now, I flop right in after him. I need the rest! He is out in seconds. I lay there sometimes for hours, but at least I am resting.
I now have a caregiver that gives me 10 hours a week courtesy of VA. And I recently had my first Respite vacation for 9 days, also courtesy of VA. Bill was in the Navy for two years back in the 50's. No war time service but I still receive a few benefits. The Respite was at the beginning of July. I feel like I need another vacation and it is not even a month since the last one. I just hope I can handle this in the good shape I am currently in. I am working at that every day.....to stay healthy myself. I am 70 and he is 80. He has nothing wrong with him besides Alzheimer's Disease. I pray this doesn't go on for another 8 years. I don't think I will last that long! Only God can give us the strength we need and the courage to go on.
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My husband of 50 years has dementia with no meds.. I find I can't keep up with the changes that keep occurring in the last few months. Once simple tasks such as doing the washing cannot be done without my supervision. It is the most mysterious of diseases. I'm sole caregiver and there are many times I wish for a different life and mourn for what used to be. I've just begun to attend a group and am researching counseling that is available in my area. Thanks for listening
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I too have many of the same feelings watching my husband move through the stages of dementia. The comments are helpful--especially the notion of ambiguous loss. That really seems to fit!
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LuvRLabs2 - It sounds like you are suffering from ambiguous loss - and are grieving. That is a real problem when he is present in body but not in mind. I found it very helpful having a psychologist to help me shrink my problem down to a size I can handle and a support group to listen and give me emotional support as my husband goes through each stage of his disease. Just learning about ambiguous loss lessened my feelings of despair and guilt.

Salisbury: I am the one not hearing very well. Found an ad for a "personal amplifying device" for about $20 and decided to try it. Hangs over the ear with a bud that directs sound into the ear. It has an on-off switch and a volume control. With the cost of hearing aids in the thousands I thought it was worth the try. Big help - best with the volume control at or near lowest level. High volumes can distract and even hurt. Combined with short clearly spoken sentences spoken in a normal voice or at a pitch a little lower than normal the device could leave your husband only having to deal with the slower processing.
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And are you the same women I hope not he's sick your motor I hope not weather sick or not we are all different after years of togetherness most men are funny they like to buck the system its in them they need Chang and we do too but not as often surprise him dress different act different put him in his place pamper him do some thing crazy as for family over that's more for you then him he wants you to be center as if he passes he wants you not alone and them heart broken he sounds like he is nice as for night or day mirrors they happen with lots of people while on different meds you this center of life and he is yours the kids have a life and there kids my be too over tiering for him men love kids but not like us
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I am also at my wits end & my husband of 51 yrs is not on any meds but doc wants to start him on one after next visit. He put down all our children who are so h3elpful to me and got mad at our son because he gave me a hug yesterday. It's just that a;; these little things add up.
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Dear Salisbury, losing communication is one of the most depressing parts of early dementia. Here is a thought to help you cope. Picture yourself in a very noisy restaurant trying to understand what a person sitting across from you is saying. You miss a few words here and there and your brain is trying to fill in the blanks. Or consider being in a foreign country where your knowledge of the language is what you learned in high school. You can't really get what is being said. Living with someone with dementia is the ultimate patience training.
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Dear Luvrlabs2,

I am so glad you wrote this I just had two very bad days with my husband. It is a combination of hearing loss, very slow processing, and memory loss. The result is really terrible communication between the two. Honestly, I thought I would lose my mind the other day. All daylong he was freaking me out with his misunderstandings of what i had said. Twice he understood the EXACT OPPOSITE of what i had said.

Sometimes i handle this well. Like when I calmly explained that we need to do a better job making sure that his hearing aids have fresh batteries and tips--of course, then he wants em to do it... Other time s I really want to kick myself, as in when I shake my head even slightly in despair when he asks me to repeat what was a large effort at explaining in the first place. Or, again, when he has completely misunderstood me. I am finding this scary!!!!!!!!!!!!!!!!!!!!!!! I don't want to make him feel bad or "less than" but I also do not want him to constantly thrust the responsibility for our communications.

Need sympathy!!!!!!!!!!!!!!!!!!!!!!!
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LuvRLabs2, I'm sorry that you have to go through this, its a very unsettling process. My husband started taking Namenda and Galantamine (similar to Airicept) dementia medications in late 2011, after a few months I noticed paranoia and delusions which seemed to coincide with abdominal distress from the galantamine and drinking orange juice with Namenda. These symptoms disappeared when I cleaned up his diet giving him very plain food, eliminating garlic, onions, and processed food. His breakfast consists of a potato fried in coconut oil, two eggs, toast, smoked salmon and tomatoes. After that he gets his medication. This has kept him from having abdominal problems for 3.5 years. His physician says I can start backing off of the medications because they are probably no longer effective. However, when I do start cutting them back, he starts having problems swallowing and talking, so I am going to continue. Since he was diagnosed, my husband's weight has dropped from 190 to 145 and his high blood pressure which was higher than145 with meds is now normal without any meds. Once you get used to and accept your husband's current condition, something new will happen and you will feel the floor fall out from under you again and again. Keep reading about the different stages of dementia and be prepared for the unpleasant symptoms such as wandering and incontinence.
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I agree with Grandmama......keep reading and writing. This is a great site and outlet for you. I'm taking care of my mom with alz/dem. Although she is in a facility now (has been for 5 1/2 years) she lived at home with my dad for 7 or 8 years with this disease. I truly don't know how he did it for as long as he did. I have told my story any times on this site and I will try to make it short but my sister and I started seeing changes in our mom 12 or 13 years ago. She was one of the sweetest women we knew. She started forgetting things, not understanding things, repeating question after question. It just got worse and worse. I would do my best to take her out to give my dad a rest but she would get antsy and want to get home since they would have to go eat which wasn't true (when I picked her up they had just eaten). She stopped wanting to go to church, dinner with friends etc. which left my dad totally dead in the water. He had a massive heart attack and during that time I moved in and took care of her since she couldn't be left alone. After 2 mos. of taking care of both of them, I ended up taking her to a facility just for respite. thought it would be for 2 or 3 weeks and here it is 5 1/2 years later. It was one of the hardest things I have ever had to do because she knew what kind of place it was and that I was leaving her there. Dad was not getting any rest at home due to her not understanding why he was in bed all the time. Even if he had been healthy I don't believe he would have been able to take her. He landed on Iwo Jima and was there all 36 days but he wasn't strong enough to take this woman he loved so much. So I did it for him. He doesn't go see her that much because it's just too hard on him to see her as bad as she is. They just had their 71st anniversary.

I've rambled too long but Alz/dem. is evil. It takes away the person you love and it takes away your life also. So many of us are going through this. You MUST keep your sense of humor. It's hard at first but at some point you will be able to laugh at some of things he's done or will do, not to mean but because we love them and want to remember something good. As I said before, stay on this site, write to us and you will have our support and all the information that we have learned. You might want to join a support group or look into a daycare center for him. Stay with him the first few times so he will get use to it or bring someone in to stay so you can get out and not just to get groceries. We support you and have your back. Good Luck and God Bless

Oh, one more thing......on another page we have been talking about coconut oil and the benefits for alz. You might try it to see if there is any change in your husband. Start small so there is no upset stomach. No taste and melts fast or there are pills.
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That is how I feel a lot of the time. I am caring for my husband also. We have been married 61 years now and it just seems so unfair, when we should be having a great time being together and looking back on our life together, instead we have this ALZ to deal with. My husband was diagnosed with ALZ 3 years ago and is now getting to the point where he doesn't remember some people. I can be talking about someone in our family and he will say " I don't know who that is" I have tried looking thru pictures with him but then I see he doesn't remember hardly anyone. As far as the medicine is concerned my husband has only been on Namenda but he was only on that for maybe two months and then he decided he didn't want to take it anymore.and the doctor told me that none of the medicines help very much so why fight with him to take it. You are so right, this is certainly not the men we married. This is a terrible disease. It takes a person and makes them so different from who they were. So sad. Many hugs to you. Keep writting. the people here have some great advice and it helps to share.
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I could feel your pain through your words and just wanted to offer a friendly hug.
Life can really seem cruel at times but we must not let that cloud our memories of those many great moments which I'm sure you had during your 51 years. I'll always remember an older neighbor who you knew not much got in his way when he was younger telling me "Getting old ain't for sissy's". Not to make light of your difficult times but try to take the good with the bad and know there is a God in Heaven who understands and has a plan for all these things that we just don't get.
I'm not qualified to provide medical advice but I thought you may be interested in what I found since he has just started taking Aricept.
Initial dose: 5 mg orally once a day, in the evening prior to retiring
Mild to moderate Alzheimer's disease:
-Maintenance dose: 10 mg orally once a day, after the patient has been on an initial dose of 5 mg once a day for 4 to 6 weeks
God Bless
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