I just found this site today. My husband is 60. He was diagnosed in January of 2009. As I look back before then, I can see alot of things that in retrospect were signs. I really am unaware of what stage he is in, but I have had to quit work to care for him. He cannot carry on a conversation,feed himself, dress himself, bathe himself, drive, or dial a phone. Lately, he has started to have spasms where he jerks and sometimes just drops to the floor. (very scary) Since all we have coming in is SS, it is financially difficult. I have used money from my mother's estate to add a third floor to my house to be able to move our youngest daughter and her family back home with us. This was her idea. This is still a work in progress. We have just reached his insurance's coverage gap and now must pay for his Namenda and Aricept out of pocket. I am still paying premiums for my health care from work, at least until I get all my dental work done. Neither Blue Cross nor Medicare will pay for the cost of the PET scan he needs. His doctor (who shall remain nameless, God bless him) has suggested that I just get it done and stiff the hospital. I am so afraid of losing our house that I can't do it. I realize that there are legal things I must do to prevent that and handle other things. Any help at all would be GREATLY appreciated.
Linda....I had requested a pet scan for my dw, and received a preapproval for it, but after the results were in, BCBS declined to pay for it ($4952). They claimed it fell under mental health benefits and our policy did not cover that. After months of fighting with them, our doctor changed his diagnostic code, saying he wanted to see if her breast cancer had metastasized to her brain. BCBS paid the claim based on that. My advice is that you get preapproval for a similiar condition, or have your doctor use his imagination..ie checking for prostrate problems in the brain, clogged intercranial arteries, or some other creative diagnostic code....Some coding from bcbs automatically gets declined, but by being creative, you can get them to cover it.. It takes lots of work, but without the proper coding and diagnostic code, they will not cover it. The doctor;'s office is your best bet, because they should know what codes are the best to use...Also, be aware that preapproval does not guarantee payment...perhaps the doctor can use a coding that addresses his spasms and jerks....also, check with the hospital so that they are also aware of the proper coding....I ran into lots of problems because the pet scan they did was not what the doctor had ordered... ALso, the PET scan will reveal the areas of the brain that are affected, but since there is no cure, it's only value is to try to match symptoms with problem areas, and to verify that you are dealing with dementia related problems. Good luck to you.
Hi Linda Mc. Welcome to the site. Sorry you have the need to be here but you will find help, comfort and caring from the folks here. My DH was dx'd in September 2007 and is on Namenda, Aricept, Sertraline and Seroquel. The last 2 are to help with his hallucinations/delusions. He is also on a couple of other pills not related to AD. I hope you can find the help you need for you husband and yourself. Take care and God Bless.
phranque...we have been denied 3 times. The doctor says we need the test because we need to know if it frontal temporal. Our doctor says that Aricept and Namenda do not work with that type of dementia so we are wasting what is now our money. My daughter is a regional manager for an insurance company that sells supplemental insurance. She also said that it is all terminology. I think they are denying us because a diagnosis has already been made to satisfy them.
Jean21...Thank you. My husband is also on Aricept and Namenda. He was also on Depakote, but I stopped that with the doctor's approval because he was agitated and was not sleeping at all when he took it. He also is on Trazadone, but it doesn't seem to be helping with the sleeplessness either. My strength is my daughter and she will be moving back home to help as soon as our addition is finished. Taking care of him 24/7 has been pretty overwhelming. Thx and God bless us all.
Welcome to my website. You have come to a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 4 sections for EOAD (Early or Young Onset, which applies to your husband - those diagnosed under age 65) members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Linda welcome to the family. When my husband was put on aricept it made his rages worse which started me thinking it was FTD. With some med changes he did get an extra year at home. Docs are too quick to start aricept with bothering to make a more accurate diagnosis.
Welcome Linda to the group. the need to be here is depressing but luckily the folks here are very helpful and understanding. there is so much info on just about every topic you can imagine if you do a search. divvi
Welcome to the site but sorry you have a need. My husband was diagnosed with FTD in 2008 when he was 58. He takes aricept, namenda, cymbalta and seroquel. Your doctor is correct that aricept does not always help a person with FTD (it can make aggression/rages worse) but my husband's neurologist said that he has had some patients that it did help and wouldn't hurt to try. Namenda is being studied to see if it will help FTD. As my husband has had no adverse reactions to either of these drugs and they did seem to help at the beginning he continues to take them.
My husband never had a PET scan. He was diagnosed by an MRI and intensive neuropsychological testing. So I have no answers on how to get insurance to cover it.
LindaMC..If you have been denied 3 times, I think they will not approve it....but there is hope. Contact the hospital that will does the pet scan, and negotiate.....explain that insurance will not cover it, and you have to pay out of pocket... Our hospital agreed to reduce the $4980 bill to $2100, if I paid it right away. Sometimes you can even talk to the technicians and attempt to enlist their help in reducing costs...It never hurts to ask, and I did 6 months of begging and pleading just to get the test done. It is worth the effort, and then you can verify ftd vs alz.... Sorry that you have to go through this. My dw tried excelon patches, aricept, and namenda, and we have decided that the medications make no observable difference. I am attempting to introduce liquid risperadone (known as vitamin b900 for my wife), and will try it to see if it helps with the rages and aggression. She was on it before, but she refused to take it. Now we are being creative and claiming vitamin b900 as a benefit to dementia. If we do not see any improvement in a month, we may decide to stop all medications, and just let the disease progress naturally.
Linda, welcome to our group. Your husband is lucky to have you and your daughter to take care of him. Please know that we are all here for each other.
With some patients Aricept or Razadyne (similar) do work (especially in the beginning stages) and with some they do not - whether they have FTD or AD; everyone reacts differently. However, from what you are saying, your husband is in stage 7, and removing his medication at this point might not make any difference, since you are having to do everything for him now. That medication seems to usually only keep them ambulatory longer in the beginning. I really don't think having the PET scan at this stage would improve his condition and you can TRY weaning him off the Aricept and if he does have any adverse reaction, start it back.
My husband is doing and not doing the same as your husband. I am keeping him on half dosage of Razadyne and Namenda for now.
Mary brings up a good point. It would be helpful to get a handle of the stage of the disease your husband is in, to determine whether the PET scan and medications are worth pursuing. When you say he cannot feed himself, dress himself, etc., do you mean he can't do it without help (which would be Stage 6) or do you mean someone else must feed him, completely dress him, etc. (which would be Stage 7). It may be helpful for you to check the Alzheimer's Association website under Stages of the Disease to get a better idea, and then decide how to proceed. If you are dealing with Stage 7 AD, I agree with Mary about the scan and the medications. Please keep posting, you will find this site an invaluable resource.
I cannot tell all of you how relieved I am to have found this site. I'm sure you all feel the same way.It is so tempting to just throw all the medicine away and let nature run its course. I don't know if I'm that brave. I did take him to a church healing service last month which was something I never thought I would do. I'm a firm believer in God being the Great Physician, but I believe it is His will not the intervention of a questionable intermediary. He does need alot of help with everyday tasks. Feeding - he does fair sometimes with finger foods. He can drink, unless he has one of those spasms that sends everything flying. Eating with utensils is 95% impossible. I or my daughters feed him when they are available. He will try to dress himself, but you can end up with 2 socks on the same foot, having on 2 pairs of boxers, or 2 different shoes. I try not to take him anywhere that doesn't have family restrooms because if you send him in alone, you don't know how he will come out or if he will come out at all. I have to bathe him all the time. He will put soap on his hands and wash them and that is it. I've found him putting roll-on deodorant in his hair. He has top dentures and he cannot take them out at all by himself so I get in there and do it myself. On the other hand, he has a partial plate on the bottom that he flips around all the time. I think that I will try weaning him off Aricept and see how that goes...maybe try every other day for about ten days and see how that goes. My biggest problem right now is the insomnia. I guess if we find the right sleepiong meds, that should do it.
linda i know alot of us are tempted to just pull our spouses off these meds but please ask your dr about how to go about it. some meds do better for the patient if they are slowly weaned off and not cold turkey which can produce another round of unwanted side effects. these are all potent mind altering meds most of them so be cautious about dosings and or cancelling them without a drs approval or at min speak to your pharmacist to see how best to go about it. the spasms you are speaking of many of our spouses have them too. its called myclonous jerks and some have minimum jerks to full blown hard jerks with our spouses. sometimes sporadic at best and not all the time. i will bring up the topics of the jerking and you can read about our input and experiences. while some think they arent important to treat or cause pain, there are meds that can give your spouse some relief from them. you would need to have him see his dr and ask about keppra, or neurontin which mine uses for them. they have all but subsided with use of the meds when needed. i hope this helps. divvi
Hi and Welcome Linda, As others have mentioned, I hate that you have the need for this forum, however, I am glad you found it. My husband is 59 years old, he suffers from FTD. He started losing his memory at age 50. I had to place him in an ALF in March due to behavior problems. After medication adjustments he is doing better with his aggressiveness. He actually had 2 PET Scans, the first didn't diagnose the FTD. 2 years later the 2nd PET Scan did. He also had the jerking you have described...but never fell to the floor. He was prescribed Keppra, which has basically stopped them, he still jerks every so often, but not violent as before. He is no longer on any memory medications, he takes Lamictal,Keppra, low doses of Risperdal ,Klonopin & Ativan if needed.
Welcome Linda. My husband is 60, has FTD and was diagnosed in 2008. He was on Aricept and Namenda, and Celexa when he was diagnosed. His restlessness and agitation grew into aggression and I attribute the aggression/violence to the Namenda. A nurse in an ALF said when the patients in her dementia unit were given Namenda, 25% of them became aggressive when they were not previously. My husband never had a PET scan so I cannot offer advice on that. He is stage 5/6. He is no longer on Aricept or Namenda but is on neurontin, seroquel, and colonopin. Meds have helped tremendously with agression.
Welcome to a place of comfort, encouragement and first-hand willingly shared knowledge--tho' it would be nice to never need this site:) My hb has vascular dementia and uses an Exelon patch and Namenda. Has never had a PET scan, but was scheduled by a new neurologist to have one a couple months ago. I talked w/a neurology nurse practioner and read about it; then canceled. Seemed for the $ it would serve no purpose in our case.
Linda--Family restrooms are the best, but I have started taking my husband into small ladies' rooms when necessary. The Alzheimer's Association has printed cards that say "Please be patient, the person with me has Alzheimer's Disease. Thank you for understanding." I also have a 5 x 7 sign a friend made for me that I can clamp onto the handicapped stall door, if I need to (haven't used it yet).
Linda, for me the Convenience stores had the best restroom. Almost always only one toilet and sink and big so I had plenty room to go in and help him. We we got to the problem of restrooms in Resturants we ordered in drive-through's or take-out. Easier for both of us and by that time he didn't want to go in either because of physical problems. Good Luck.
marilynMD, I looked on the AZ website, but I couldn't find those cards anywhere. Where do I find them? I was considering printing up my own. I'm probably going to have to start taking my DH into family restrooms because if we each go into our own & I take a little longer, he sometimes doesn't know where I am & goes wandering looking for me.
Linda Mc, Welcome to our family! We wish you didn't have to be here, but since you do, we will be here to listen to you & offer our support. We understand, so feel free to tell us whatever is on your mind.
I never realized how necessary family restrooms were until I decided to drive to Florida to spend a couple months with family. There were none in rest areas on the highway. Not only did I never know what condition he would be in when he came out, he actually injured himself and was bleeding. And to compound that he could not talk to tell me what had happened. Most WalMarts and malls have some facility where you can go in with them.
Elaine--call the Greater MD Chapter (1-410-561-9099) and ask for the helpline person and maybe they will mail you a few. They look like business cards--I got them there. (I looked it up and where you live falls under the DC Chapter, but I don't know if they have them.) One of the guys in our support group laminated some and gave them out--I keep it in my wallet.
Linda Mc, so glad you found us. You have found a safe place. We will hold your hand through the scary parts that we have been ourselves. We will throw a rope to you should you fall overboard. We are here for you.
Grannywhiskers, thanks for the welcome. I needed it especially today. He took off twice today. Hew didn't go anywhere he couldn't be found easily. He's generally pretty predictable. He was mean today. He pointed to the door and told our 8 yr. old grandson "you, out". Evan didn't react at all because he knows grandpa is sick. He has become very selfish. Everything is about him and he goes through the house at times pointing to things and saying "mine". I tell him that this is hard for both of us and his being mean doesn't make it easier. I've told him if he needs help with anything, all he has to do is show me. I've told my teenage grandchildren that if they ever think that they're in love with someone, just ask themselves if they could wipe that person's behind if necessary. If the answer is "no", just walk away. This is definitely a learning experience. I just relish all the times that he almost seems like his old self. At the end of this day, he cried and said he was sorry for today. I know he's still in there. Well, goodnight and hugs to everyone. God bless us all, give us patience, and lighten our loads.
Linda Mc, My DH does the same things as yours. Everything is HIS! He also gets mean & in moods & gives me dirty looks. He hasn't told our grandkids to get out yet, but that is probably just a matter of time. He also cries at times & tells me he is sorry for being such an asshole. It is nice to be able to come here & read that we aren't alone on this journey.
Elaine, isn't it wonderful and awful all at the same time to share such misery. It's a terrible thing that one finds so much comfort in sharing like miseries with others. But it is truly wonderful to know that we are not alone and that when we want to whine a little, there are people who know EXACTLY where we are coming from.
Linda Mc, yes, what you say is true. I don't know if you go to a support group, but I don't. The one I was going to ended when the facilitator passed away, anyway I couldn't arrange to go now anyway. So for all intense & purposes this IS my support group & it works! Feel free to e-mail me if you'd like. My info is in my link on my name.
Welcome Linda Mc I'm sorry but glad you found this place. We can be at our 'wits end'..and find the answers and the support and the inspiration to go on..right here. I'm continually thankful for everyone.
Elaine, I have never been to a support group either. I have spoken on occasion with the Alzheimer's Assoc. Judy, thanks for the welcome. I am trying something with my husband since I cannot get the PET scan paid for by insurance. I've cut his Namenda down to half of what he normally he takes. I realize that this could have varied consequences for the people that try it, but he had the best day yesterday. I've talked with him about it and we agree that this thing is going to run it course no matter what we do. He was much more alert and was nearly coherent when carrying on a conversation. I already took him off Depakote because it agitated him and seemed to cause insomnia. That was with his doctor's approval. As I said before, our doctor said that Aricept and Namenda don't really do any good for FTD so I figure we will try to find out for ourselves and be very careful about it.
Day 2 of cutting his Namenda in half. Still wonderful. He's been much more alert and enthusiastic about things. Conversation is improved. He's actually been feeding himself with utensils. Time will tell.
Linda - when my hb tried Namenda the side effects that we choose not to live with were extreme exhaustion, confusion/brain fog, and vision changes. These went away after taking him off and he had only been on for three months. So it makes sense it could have been the Namenda making him worse. I am glad that you have seen the positive changes.
Charlotte, I am so glad to hear from you. Lloyd had been on Namenda for about 22 months. I want whatever time we have not to be spent with him dozing off everywhere we go. And his mood could have easily improved without the confusion/brain fog. The confusion alone and the frustration from it could have caused the anger and moodiness that are not near as prevalent now. I've known him since he was 17 and he always reacted to frustration with anger. Now he laughs and is silly in spite of the Alzheimer's. I intend to call the doctor on Monday and let him know what is going on. He still has been taking 10 mg in the evening, but I am going to start cutting that in half - 5 mg in the morning and 5 mg in the evening. I am not afraid to try anything to make his life better. He may have Alzheimer's, but Alzheimer's can't have him...at least, not yet!