|
|
Joined: 12/25/2012
Posts: 9
|
My husband started having memory problems at the age of 57. He had an under active thyroid condition come up three years ago. After that was diagnosed he suddenly forgot all of his math, began to be very confused. After seeing our family doctor and a neurologist for a year they sent us to the University of Nebraska Medical Ctr where he was diagnosed with primary dementia (either lewy body or alzhiemers). The last three years have been a roller coaster. He lost his job in Sept of 2011 but was approved for ss disability in two months. He has continued to have worsening symptoms. He is now on namenda which is helping with his speech but not the confusion. He has been unable to drive for two years and still has lost most of his math skills. I watch daily as I slowly but surely lose the person I have been married to for 37 years. There are the good days when my hopes get high then they are dashed when the bad days come. I have tried to get information from a lawyer, financial adviser as to what to expect when we need long term care, with our annuities and finances but never seem to get any answers. I want my husband to have the best care he can but at the same time I have to eat and live also. This is so scarey. I wake up many mornings and think "Please God, let it just be a nightmare". I know that's not so. But it is a nightmare we are all living with this insidious disease. This has affected every aspect of our lives. I hope to be on this message board at least once a day to support you and to have your support as we go through this scarey journey.
|
|
Joined: 12/6/2011
Posts: 3326
|
Here is the website for the Alzheimer's Assn chapters in your state. If you haven't contacted the one closest to you, please do. They may be able to give you information on the services and placements possibilities in your community. You will have to cut and paste the link. Something seems to have changed on this Alz Connected b/c it's become difficult to post links you can click on.
http://www.alz.org/apps/findus.asp?SearchState=IA&SearchByState=Search&FormSent=1#SearchStart
God bless you and your husband!
|
|
Joined: 12/15/2011
Posts: 18704
|
Welcome, mitidai. I'm sorry you and your husband have been affected by dementia. Are you working with an elder attorney? They know the most about preparing for Medicaid, preserving assets, and preparing for a life with dementia.
You can find an elder attorney at this site:
www.naela.org
You can find a certified elder attorney at this site:
www.nelf.org
Please read the sections in the main web page, alz.org, re: finances and planning for the future.
Also visit the Spouse/Partner board and read the advice given from those members re: their preparations for their futures.
Post your introduction and many will respond and support you. There is a wonderful supportive group over there and they are facing the same issues as you.
Iris L.
|
|
Joined: 12/7/2011
Posts: 1
|
Thank you for sharing your thoughts. I too was diagnosed early at age 44. I am grateful for everyone's comments. I am new to ALZ.org I'm lonely and I feel lost.
|
|
Joined: 12/15/2011
Posts: 18704
|
Eor, welcome to our online support group. Here is where you can come when you feel lonely and lost. We've all been there.
I'm sorry you have this diagnosis at your young age. I began having memory problems, the same as you had except for getting lost, when I was 37 years of age. I was a pediatrician. I had to leave my pediatric practice abruptly twenty-five years ago last week when the chief of staff threatened to place me on probation.
At that time no one knew about memory disorders. My diagnosis was depression and anxiety, later systemic lupus. Only in 2008 was I diagnosed as cognitive impairment nos (not otherwise specified). I began Exelon patch and Namenda in 2009 and both of the medications have helped me a great deal.
I becan reading these message boards in late December 2008 as a lurker. I read every post in the EOAD/YOAD board, then the I have AD board, then I began the Caregiver board. It took me about two months to read every post. I joined in Feb 2009 in order to be able to ask questions and to receive support.
The support from the other members is AWESOME! I haven't found better support anywhere else, online or in person. Here there is always someone to encourage you or commiserate with you or just listen to you.
I encourage you to post often and to ask questions. Feel free to begin your own thread by clicking on "Add Post" on the main Younger Onset AD board. You can introduce yourself and other patients will welcome you.
You don't have to feel alone. We are here.
Iris L.
|
|
Joined: 1/15/2013
Posts: 1
|
Hello ,My husband was diginossesd in 2004 he he was also 57 ,But had heart attack and bypass surgery ! Came out of hospital and has never been the same ! are stories r similar,, My husband now stage 7 hospice ,,, ! I am in Calif !
|
|
Joined: 12/15/2011
Posts: 18704
|
Welcome, grammalori. I'm sorry to learn of your husband's condition. You may want to share your story with the members on the Spouse/Partner board. Many of them are also caring for late stage loved ones.
Iris L.
|
|
Joined: 1/24/2013
Posts: 31
|
I feel your nightmare. My husband just turned 51 and he was diagosed in July. I have kept very busy trying to figure out how we are going to take care of our selves. My moto is take one day at a time. I hired a disability attorney and an estate attorney. It cost but they can help you. We only have major medical insurance so it has been very expensive with all the tests. I have two sons. 18 and 20. They are better but were in denial in the beginning. We have a long road ahead us. I have been so focused on finances that I haven't prepared my self for what is happening with my husband. He gets very confused and only talks when spoken to. He helps me with chores and has a routine that he does every day. I work at home so that helps. He does not drive so it makes it hard. I have to hide the keys. It scares me to think to far ahead. I realize that it is going to be so much worse. We are to young to going through this. We will be empty nesters next year and it was not supposed to be like this. I just joined yesterday and I hope that this group will help me understand what we are in for. So we are all in this together.
|
|
Joined: 12/5/2011
Posts: 795
|
Hello NeicieBomBom,
Welcome to the Message Boards. I'm sorry to hear about your husband's diagnosis. Is he being treated with medications for dementia or AD?
Is he being seen by a neurologist who specializes in dementia/AD care?
I was diagnosed @53. I am now 58 and doing fairly well. I use an Exelon patch and Namenda and Cerefolin NAC along with mood stabilizers. I have also participated in two drug studies. The first failed. The second one I am still currently in the 2nd part of this study and doing ok.
Good Luck. We are here.
You may want to post on the Spouses Forum.
Please, let us know how both of you are doing.
Peace and Hope,
Lisa
|
|
Joined: 1/24/2013
Posts: 31
|
Hi Lisa,
Thank You for your reply. My husband is seeing a Neurologist. He had a petscan that showed that he had severe ALD. When I look back he has had symptoms for about 4 years. He has changed very much the last year. He uses different words when he talks about things. It is effecting his language. The Neurologist has put him on Aricept. We have an appointment next week and he said that he is going to try something else. Not sure what the name of it is. I hope something works because he seems to be getting worse fast. He can't follow simple directions any more. I have to try to give him a little bit of direction at a time. I am not sure what stage he is in. I am a very organized person and am having a hard time dealing with not knowing where he is and how long we have. I understand everyone is different but he seems to be going fast. He is only 51 and I am 53. I hope and pray that the meds help slow down the process. If anyone can suggest any meds that they have been on and has worked, please let me know. We may do clinical trials but not yet. What do you think of the clinical trials? Are they worth it? I am self employed and cannot take off work because I would loss my business. I am the sole provider for my family. Thanks for listening to me ramble on. You have a positive attitude and that is wonderful. My husband doesn't even understand what ALD is? The doctor tried to explain but he didn't understand. I don't want to say too much and get him upset. He tells me that he will look it up online and never does. Best of luck to you.
|
|
Joined: 2/14/2012
Posts: 1752
|
Hi, neciebombom. Please do come talk with us on the Spouse/Partner Caregiver forum. It's the second forum on the list:
http://www.alzconnected.org/discussion.aspx
Meds: Aricept is a cholinesterase inhibitor. There are two other drugs that belong to that category, Razadyne/galantamine and Exelon. They are similar, but there are still differences in efficacy and/or side effects, so if your husband isn't doing well on the Aricept, ask to have him switched. See:
http://www.alzcompend.info/?p=244
Namenda belongs in a different category. Many patients do better on a combination of a cholinesterase inhibitor and Namenda than on either one alone, so the neuro may be thinking of adding that.
Axona is a prescription-only medical food. Many of our loved ones -- including my husband -- have responded well to that, too. Start off slowly and ramp your way up to a full dose, though, and give it after a full meal heavy in protein and healthy, unsaturated fats. Otherwise, it can cause cramping, nausea, diarrhea, etc.
I'm a big fan of clinical trials. There are many promising new drugs coming down the pipeline, and a clinical trial is usually the only way to get access to them years before the general public does. Of course, you won't know if a given drug is going to work for your husband ... but heck, that's true even for the drugs that are FDA approved.
I looked for clinical trials that were Phase III (so I had some inkling about safety and efficacy); that had as high a chance as possible that we'd get the "real thing", rather than placebo; and that were going to go into an "open label" phase after the double-blind, placebo-controlled phase -- and, preferably, would do so in 3 or 6 months, rather than, say, a year or two.
|
|
Joined: 2/14/2012
Posts: 1752
|
Oh -- the members of this forum who have EOAD have a truly unusual degree of self-awareness.
Most Alzheimer's patients have "anosognosia", a symptom that blocks them from realizing there is anything wrong with them. And because they truly don't think there's anything wrong, well, there's no reason to read up on it. I'd keep on the way you have been ... answer any questions he might ask, but avoid saying anything that might upset him.
My husband "knew" he'd been diagnosed (with late-onset AD), and read up on it, but figured he was still very early stage and wouldn't ever get very bad. I used "the A word" freely in front of him, since it didn't seem to bother him.
He did sometimes realize there was something wrong by the time he was late stage 6. Every once in a blue moon, he'd ask why his brain felt funny, or why he was having trouble thinking. I'd explain that he was sick, but the doctor had prescribed medicine to help him. He accepted that, and seemed reassured that the doc and I were on top of things.
|
|
Joined: 1/24/2013
Posts: 31
|
You are very educated in ALD. I have so much to learn. We have a doctor's appointment next week. Thanks, I have more questions to ask now.
|
|
Joined: 6/21/2012
Posts: 40
|
My wife will not admit she has a problem and up to now, seemed content to be at home. I just work half days, but have to leave her alone for 4 - 5 hours a day. Lately she has started to notice she doens't have anything to do it bothers her. She doesn't drive (gave that up a year ago), can't concentrate enough to read a book, can't get on the computer, and if any sort of device requires more than one step, it won't happen. I feel like I need to get someone to be with her during the day, when I'm not there, but I think it would upset her to have a stranger show up and hang around. She is losing motor skills...has trouble with stairs and we just found out she no longer can ride a bike. I would like to get her on meds, but in order to get them I would have to see a doctor. When she was originally diagnosed (8/2011) she cried for three weeks solid. She has now pushed it out of her mind and we just don't talk about it. I really don't know where to turn...maybe have someone come to our home under the guise of a housekeeper or something. She is only 54 and does seem to be losing ground quickly...I dread the day she can't stay at home!
|
|
Joined: 12/15/2011
Posts: 18704
|
Randy, many families make use of Adult Day Care for their LOs while they are at work.
If you repost your question on the Spouse/Partner board, you will get more responses. Many of these members are currently making use of Adult Day Care and they will give you their experiences.
Here is a link for that board:
http://www.alzconnected.org/discussion.aspx?g=topics&f=2147485438
Iris L.
|
|
Joined: 2/14/2012
Posts: 1752
|
Randy, do please come talk with us on the Spouse/Partner Caregiver forum. We can offer suggestions on how to get your wife the medical care she needs (really, you mustn't just let that slide!), and how to get help for her. It does sound like she shouldn't be left alone for extended periods of time ... and you may have difficulty finding a Day Care for someone so young.
|
|
Joined: 2/14/2013
Posts: 8
|
I am new to this board, so I hope you get his. My husband was also 57, when he was diagnosed. He is now 66. I am losing him slowly day by day. I also went to see lawyers, bankers and Ins, companies. They all said the same thing, get everything on your name. He agreed, I got the power of attorney, changed all the bank account to my name. Talked to S.S. to Medicare, its scary to think what will happen if they have to go into a facility, we don't have long term Ins. What will I do after he is gone, or what if I go first what will happen to him. He can still dress himself, showers, shaves but forgets and repeats himself. I have a lot to say but this is my first post so I will make it short. We have to be strong!!!!!
|
|
Joined: 2/13/2013
Posts: 2965
|
My husband too has early on-set. It is hard to say when he actually began with the dementia. He was having symptoms while in the Navy. His doctors diagnosed him with adult on set ADD, stress, anxiety and just the aging process. After getting out, we went to two different neurologists. One stated that he definietly did not have any form of dementia (that was her specialty) and was not having seizures. One stated she thougth he was having seizures, but could not get one recorded on his routine EEG's. Finally, we went to Johns Hopkins who diagnosed him immediatley with seizures. After spending almost an week in the hosptial and having three neuroligists testing him, it was concluded that he has Hippocampus Sclerosis Syndrome. They thougth his dementia was non-progressing. Last Spring I think he may have had a break through seizure. Then in Oct. he barely missed a head on collusion (both cars hit each other by the front light on the drivers' side). I took his license away, told the judge that I had, took him off our insurance policy and sold my car to our son. He was then dx in Nov. with having progressed and now Early Onset Mild to Moderate Alzheimer's. This has been going on now since 2002 or 2003. He is only 60.
I had hoped we would have had a wonderful life together, but I guess the good Lord had other plans for us. I have only been going on this site for 2 weeks, but I feel so much support. I am very grateful. I hope we can all get through this together.
Lesley Jean
|
|
Joined: 12/15/2011
Posts: 18704
|
Lesley Jean, is your husband able to join us patients here on the Younger Onset board? We would love to meet and support him.
Iris L.
|
|
Joined: 2/13/2013
Posts: 2965
|
I spoke to him about joining and he is willing. When I get home tonight,I will get him on. This will do him a world of good. Thanks so much for your support.
|
|
Joined: 1/14/2013
Posts: 81
|
Lesley Jean looking forward to hearing from your husband
|
|
Joined: 12/6/2011
Posts: 3326
|
Me, too!
|
|
|
|
This is my first visit. My husband was diagnosed with Alzheimer's Feb. 2012 at the age of 59. Boy what a rude awakening. He has not asked a thing about the disease. I've asked him if he has any questions as he is not computer savy and his response was no. I 'm really confused as how to deal with this. I don't want to bring it up, I'm afraid he will get depressed but I wonder how he is dealing and feeling. He is still able to work full time at his job he has had for over 20 years, but I fear not for much longer.
|
|
Joined: 10/1/2012
Posts: 22
|
Hi KJJ,
Our situations sound quite similar, except it is my father, not my spouse the one who was recently diagnosed with EOAD. He was diagnosed in Sept. 2012 at 54. He is still working, driving, etc with few problems but I have noticed a slight progression. I too worry about today, tomorrow, the next day, 3 years from now, 5 years from now, etc. Just wanted to let you know that you're not alone. We(my mother and I) don't speak to him about the disease. I think it's better that way.
|
|
Joined: 12/6/2011
Posts: 3326
|
KJJ and Essbee, you'll probably get more responses if you post your question in the Caregivers board, but to give you my perspective, younger onset AD runs in my family. I was working full time as an attorney when I first notice symptoms. Fortunately, or unfortunately, I told my director once I had a diagnosis. Though I had no problems at work, was respected by judges and was president of the bar association, my director told me he had to let me go. I knew that was not true. I knew I could have fought it, but after considering my options, I decided to go on disability. I have no regrets. Love being retired and enjoying every bit of the time I have left, and receive a great deal of satisfaction as an advocate for a cure.
It is amazing how many people, myself included, define ourselves by what we do, instead of by who we are.
|
|
Joined: 4/6/2013
Posts: 1
|
My sister was recently diagnosed with either EOAD or Frontotemporal Dementia, they're not sure which. She is 53 yrs. old. She periodically has phantom smells. These are very bad, noxious smells that are very upsetting to her. Has anyone heard of this or experienced it? Also wondering if there's anything that can be done about it.
Thank you,
Barb
|
|
Joined: 12/6/2011
Posts: 3326
|
Yes, people with Alzheimer's and other disorders can experience problems with smell. Here is a document describing smell disorders:
http://www.nidcd.nih.gov/health/smelltaste/pages/smell.aspx
|
|
Joined: 12/6/2013
Posts: 1
|
Hey Im from Turkey not from USA but when ı saw this website,I tought that Im not alone.My mom is just 53 and this year,we learned that she is alzheimer according to doctors say.But another doctor said that she has dementia disease and we dont know about the details,the type of her disease etc.By the way,she is not aware of the her disease.She just know she has a kind of forgetfullness disease and before a couple of day,when I called her,she talked about a small notebook for her memory and she called this notebook "mind notebook".She was very happy and she was laughing but I wanted to cry.My question is,what should we do for her as caregivers?Fortunatelly,she is in the first phase of that disease.Thank you in advance.
|
|
Joined: 12/15/2011
Posts: 18704
|
Welcome, irembudunoglu. You have come to the right place for information and support. We often have international members. I'm sorry your mom is dealing with dementia. Do your best to be understanding of her and to make her life easier.
Here is a link to newcomer information:
http://www.alzconnected.org/discussion.aspx?g=posts&t=2147499795
There is a feature of dementia that causes a patient not to be aware of her disease. It is called anogosnosia. There is an article about it in the newcomer information.
http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf
There is a board where you will find more members caring for their parents. If you go back to the main board, click on the Caregiver's board. When you do, feel free to begin your own thead by clicking on the green tab, "Add Topic". You can introduce yourself to the other members and tell more about what's going on with you and your mom.
Keep reading and keep posting.
Iris L.
|
|
Joined: 2/29/2012
Posts: 6
|
My husband was diagnosed at 55 - just 2 years ago. I have read a lot just to try and understand. best comparison I found - we have fallen down the rabbit hole. (Alice in Wonderland) Trying to work (I am 53) and have a life and still respect and love him are tough. It is minute by minute sometimes - he knows I will never leave him no matter what, but he will need to go into a home someday as I work. I have developed close girlfriends to vent with - one a nurse and one with a similar situation as ours. It helps to vent. I pray and journal and cry for help from God. Nothing can explain this crazy disease that robs us of the ones we love. (My in-laws both have it too) It is not our spouse who is standing there yelling and accusing us of whatever. It is this horrible disease that takes over and controls them. We need to pray for each other often. Some days we just lose it!
|
|
Joined: 2/29/2012
Posts: 6
|
so sorry for your diagnosis at such a young age. Live your life to the fullest for as long as you can. Find a couple of friends you can openly share with. Journal your thoughts and actions - it helps to unload. Have you joined a support group? Write letters to leave to those you love in case the time comes where you cannot write - My husband has early onset and I am learning to live one day at a time and not dwell on what he has lost the ability to do but to enjoy what he can. Enjoy the sunset. Smile at others. Lift others up and you will lift yourself up. God is my constant source of energy and love when I feel I cannot take another day.
|
|
Joined: 2/29/2012
Posts: 6
|
Read I'll Be Seeing You - a wife's journey with Alz. It is a woman's journal and it really helped me prepare for the day to day.
|
|
Joined: 12/26/2012
Posts: 1
|
Hello, this is my first visit and our story is so similar to everyone elses. My husband was diagnosed in 2010 at the age of 60 but he was fired from his job for 37 years in 2005. We still have not recovered from the financial damage. When we first where told what was wrong I kept waking up thinking I was having a bad dream but after months and months I finally had to except things. my husban acts like he has accepted it and does not want to discuss it? Just like so many others I had to start becoming proactive and get things in order, dr's - financial advisors- elder attorney = disability and so on and so on. I did so much in one year that I became so overwhelmed I almost had a breakdown. It's been 4 yrs now and my husband is doing ok but lately he is not seeing himself in the mirror and keeps telling me there is someone watching him. He still can dress and take care of personal needs with some help. I try hard to focus on the positive things and not what is lost. I have an agency that stays with him during the day so that I may continue to work but it is very expensive and I am scared thinking about the future and how I will handle everything as my husband keeps getting worst.
There is a book titled Learning to Speak Alzheimer"s and it has helped me alot. Does anyone know of any other books that may be of help. This site has also helped me to realize we are in this together. Take Care and God Bless
|
|
Joined: 12/6/2011
Posts: 3326
|
Hi, Cheer. You may want to post this question on the Caregivers or Spouse boards. This board is usually posted by those of us with AD/dementia, so you might get more responses and better perspectives on the other boards. Best wishes to you.
|
|
Joined: 8/9/2013
Posts: 584
|
Cheer,
There are lots of books out there but one that helped me was "The Alzheimer's Action Plan". I have Early Onset Alzheimer's and it helped my wife and I understand all the things we needed to do to prepare for the future and live with the disease. It is a really good book.
Another one I found useful was "Alzheimer's Early Stages". Not sure what stage your husband is in but this was useful for me. I still review it when I'm having trouble in a particular area like communicating or decision making. It also has sections on care giving and care for yourself.
If you are looking for something positive to help your spirit, I wrote a devotional book called "God Still Remembers Me" that has devotions for every day of the year organized around weekly topics of interest to Alzheimer's patients. I've received lots of good feedback on it so far. It is something your husband could read as well if he is interested since the devotions are short and easily understood since I wrote them that way.
These books can be found on Amazon.com or BarnesandNoble.com.
God Bless, Paul
|
|
|
|