Hi, my name is Cindy. I am 46 years old and brand new here today. I found this message board by doing a search and I am hoping for some help and support.
My husband of 27 years, Bruce, was diagnosed today with early onset Alzheimers. I am beyond devasted even though I think we have known in our hearts for a while that this was a possibility.
Some background: his maternal grandfather had Alzheimers but developed it in his 70's we believe as best we can gather. His mother was diagnosed at 44 and died when she was 53. We have 3 children, 2 boys in their mid 20s and a daughter, 18. We were also told that they have a 50% chance of carrying the gene which will cause them to have EO Alzheimers.
We have had some reasons to believe in the past few years and especially the last 6 months that he needed to be seen and tested. He was seen by Dr Daniel Pollen at UMass in Worcester, MA. He had lots of bloodwork done, a brain MRI and a neuropsycho-something test done and the results of all of those produce a finding of EO Alzheimers. We are just lost and devastated and sad and confused and well, I am sure you all know how we are feeling.
To complicate matters, my husband owns his own business, a grocery store. We will need to make some decisions regarding that as well as income, etc.
Can you recommend where we go from here? What do we do? Books we should read? Websites to visit? I suppose once this sinks in we will have to roll up our sleeves and make some decisions and get to work but I don't know where to turn first. I appreciate any insight, advice, etc that you can give. And would really appreciate hearing from anyone who is in my situation. Thanks so much.
Oh, dear Cindy.. How awful for you all. You'll find, on the front page of thealzheimerspouse.com, a lot of resources. Search them all down. There's one area particularly for EOAD. There's also a "caregiver hints" which started because we wanted to pass along to people just starting down this dark road some ideas to help make it just a little bit smoother. It's not smooth, and you may not get a lot of help from doctors.
Cindy, I'm in RI. My husband's in Stage 6 but he's 84, so it's not as sad as for you and your family. But maybe you and I can eventually get together when things quiet down a bit.
Read and read. Talk to an estate planning lawyer before you do ANYthing financial, and try to find one that specializes in elder law - I know he's not elderly but they're the ones that know about AZ. If he's in his forties he is most likely NOT a veteran. Get all the powers of attorney and wills and everything settled NOW. Do everything for BOTH of you so he doesn't feel like he's being singled out. You will be hearing here from several people in the same situation - one has a child in diapers!
There's also some special med for that EOAD that's hereditary - Sunshyne will be on here shortly and know all about it, I'm sure.
Hi Cindy, and welcome to this site! there are sooooo many nice people here who will go out of their way to offer advice and support at any hr of the day/nite. so sorry for the dx. its so devastating for those so young. its more common than you may think,and there are many here with EO for their spouses as well who can guide you in this journey. I am 57yr and my DH is 75 so we are may/dec match like many others here too. he has had vascular dementia/AD dx for many yrs now and i care for him 24/7 at home here in Tx. you will find great support and time to release some of your your stress after you have time to browse this site. hope you find what you need and feel open to post any questions and someone will reply soon. divvi
Welcome to my website. I am sorry you have to be here, but you have come to the right place for information and support. Briegull is correct - go to the home page of my website - www.thealzheimerspouse.com - Begin with the topic on the left side that says "Newly Diagnosed". That will give you an excellent overview of where to start and what to do.
We have many members here who are struggling with EOAD and children at home. I do have the EOAD section on the left side of the website, but it is not as complete as I would like it to be. I am hoping that those members whose spouses have EOAD will see this and respond to you. I am going to e-mail one of them now to alert her to your post.
You and your husband will be going through many emotional relationship changes, and this is the place where you will find understanding to help you cope. We are all spouses who are experiencing the same things - since we are all on the same journey, but each of us at a different stage, we are able share our knowledge and experience with each other. And we have big shoulders for you to cry on.
It's a lot for you to absorb - for now, just read the "Newly Diagnosed" section.
I'm supposed to be taking my husband for a walk, but very quickly (I'll think more and get back to you later):
Educate yourself about this disease. Try to keep in mind that every AD patient is unique, and most patients will not develop the worst symptoms. And it appears that you have been very fortunate in finding a neuro who would diagnose your husband pretty quickly. This means that he gets on meds more quickly, which means the disease has a better chance of being delayed and he'll have a much better quality of life for a lot longer.
I think maybe taking a look at a recent report would be a good place to start, "Voices of Alzheimer's Disease". This was a brief summary of the findings from meetings involving hundreds of AD patients who are in early enough stages that they can still clearly voice their opinions. It says, "People with early-stage Alzheimer's repeatedly point out that they are living with Alzheimer's, not dying from it. They ... seek support in remaining viable and respected members of society, retaining their personhood and ability to contribute. It is well known that Alzheimer's disease is complicated and ultimately devastating to those who live with the disease. As it gradually progresses, it impacts not just the individuals affected, but also their families and friends. Further, today Alzheimer's disease remains fatal. But, the late manifestation of the disease no longer represents the whole picture of how people with Alzheimer's are affected. This report brings a much needed perspective that highlights the experience of those that have not yet progressed to the point of requiring comprehensive care services. Rather, they retain many of their capabilities, seek to remain as independent as possible and contribute to the world around them."
See the article and download the report at: http://www.alz.org/news_and_events_14351.asp
Joan has loads of links to helpful information, recommendations for books, etc., on the home page here. I think people here pretty much agreed we didn't care for The 36-Hour Day, which is considered by many to be the AD "bible", unless just to use as a reference for practical tips. It's hard to read, and can scare you to death.
Three other web sites: The Alzheimer's Association http://www.alz.org
The Alzheimer Research Forum http://www.alzforum.org/ (They have a special section on early-onset familial, highlighted in yellow in the menu on the left)
There are some legal things you need to address... Durable Power of Attorney for finance, Durable Power of Attorney for healthcare, Advance Healthcare Directives / Living Wills, make sure all the wills are up to date. Find a good eldercare attorney, certified, please, who specializes in estate planning and trusts. Since you've got a pretty good head start, you should be able to set up your assets for maximum protection for you, while still ensuring your husband has maximum access to Government support programs.
Get the finances in order... get a handle on all financial accounts... bank accounts, CDs, stocks and bonds, safety deposit boxes, etc. Know who holds your mortgage, and whether the insurance etc is paid from an escrow account or if you pay that directly. Get your name on all the accounts - - savings, checking and investment -- to avoid issues in the future. Check with the attorney to make sure this is done properly.
Make sure you know where you keep all important papers.
You will want to get a HIPAA waiver in place, so that you don't run into any problems being informed about your husband's medical issues. This will allow the doctors to speak with you about his treatment. You may also need a separate HIPAA for his health insurance company.
Let's see ... is your husband self-employed, or is the store incorporated and your husband an employee? I'm wondering if he can get Social Security Disability. Check into things like that with the eldercare attorney. Others on this site who have been in your shoes will undoubtedly have more to offer on this subject.
You didn't mention how old Bruce is. I, personally, prefer to fight something like AD, not take it lying down. My husband was enrolled in a clinical trial (which went very well) and I'm looking for another. However, they often limit the age range, nowadays one must be 50 years old for most of them. If you and he want to think about something like that, let us know. There's a web site listing all the clinical trials, and there are some exciting drugs recruiting right now.
Gotta run, be back to see how you're doing in a while. Take a deep breath ... we'll be here for you.
Cindy, so sorry to hear. This is the place for support and information. I know you were devastated to get the news. My heart goes out to you and welcome. The good news is that you speak of "we." Many of our spouses have no idea that anything is wrong with them.
I am 47, my husband just turned 49. We are still trying to get a firm diagnosis but it is unlikely we will get EOAD, he has lesions in the subcortical white matter of his frontal lobes so I am expecting a Subcortical Vascular Dementia (VaD) diagnosis eventually. I have 3 children, a 23 year old son out of college and a 21 daughter in her last year of college and my baby (18) started his freshman year of college last week.
We got our MRI results in June and they explained 2 years of personality, memory and cognitive changes that seemed to have no explanation. My husband is still working and driving. The most unfortunate part for us is he has no insight into his disease (according to him there is nothing wrong with him). This makes things difficult because he is making decisions that he shouldn't be making and there is no planning for the future with him.
I am spending most of my time right now trying to secure our finances, getting them as safe as possible (getting high limit credit cards out of his wallet, closing home equity credit lines, etc) and trying to figure out how I am going to get the last one through college and support us on my income alone. I am in the process of refinancing the house to lower monthly payments and sock more money away while he is still working.
My next step is to then see my attorney and see what else I need to do.
I am afraid I can not be of much help because I am only a small step ahead of you. I am three months in and my stomach is still in knots and my head is still spinning. Just know that you are not alone in this journey and there is someone on this board, more experienced than you and me, that can answer every question you have. Break them down one at a time and just keep asking them.
Cindy-welcome. My heart breaks for you younger people having to deal with the monster. My husband developed symptoms before EOAD was even a word. Nowhere to go for information. I didn't even know it was a disease. We are at end stage now and it doesn't get any easier. You will find wonderful people here and we will be with you every step. I raised my kids in Leominster Mass and Joang is also from the area. Nora
HI Cindy and welcome to the forum, though of course I am sorry for your reason to be here. My husband Lynn has symptoms in his early 60's (I'm 41)but even 10 years ago doctors didn't diagnose EOAD, I am glad you found a doctor who is competent and able to help you both. Early treatment is key.
Sunshyne already gave you excellent advice, so I will just offer my support. Remember when you are doing your planning, to think of time and breaks for you. The more the disease progresses, the more these breaks will be needed. I drove myself to the point of almost breaking trying to do this on my own all these years. This site, is an excellent place to start. I also feel you will learn more from those going through it too, than you could from any book or doctor.
Take care, I know you must be overwhelmed right now, take a deep breath... we will hold your hand and help you through it. ~Nikki
Welcome Cindy. So sorry you have to worry with this at your age. My husband was diagnosed 7 yrs. ago and is not in 5-6. He is 73 and I am 70. Before retirement we owned a True Value Store and thankfully a buyer came along and took that off our hands. He had difficulties even when we had the store and I mainly did most of decision making things.
I can only try to imagine what you and other younger ones on this site are going through. I am 75 & husband 76. He was DXed 3 years ago. Many of you seem so young to have this curve thrown at you. The others on this site offer so much info and express themselves so well, all I can say is ditto. In all this advice don't forget yourself. You are important to us and your other loved ones. If you have a close friend you can dump on, do so, as well as here on this site. You will, over time, get around to reading some of the older threads. Some are comical and others almost too awful to read. But read them I and others do and comment when we can. You are in our thoughts. This is a pronoun place. Its us, we, and ours. You are one of us. Welcome
Cindy, welcome...I am so sorry you are going thru this. It is still very fresh in my memory. I am 50 and my husband is 62, we have been dealing with this for 3 years (actually probably longer than that, but that was when things starting coming apart at the seams). This website is phenomenal, as are the people on it. It has been my best source of information, planning, knowledge and support. Bless you on this journey...we are all here for you.
What a great comment..a pronoun place...right on! Cindy, lean on all these people. I don't think you will find better info, help, compassion than right here...24/7.
I'm soon to be 48, and my husband is going to be 72 next week. When we got together 21 years ago he was a robust, athletic, executive type, and this is certainly the last thing I would have imagined us dealing with. My Dad is still living and has AD. He lived with us briefly before being placed, and my DH used to help me with Dad alot. Now my DH has it, and believe me..... I still was NOT prepared. Mainly because I have kids at home, 16 and 17. He was in his early 60's when signs were evident. I know I was in denial, in part because I was dealing with my parents health issues, but literally 6 weeks after my Mom passed away my DH was evaluated and diagnosed with AD. Most of us have the emotional relationship issues because our plans and our dreams for golden years with our spouses are literally "tossed salad." As everyone else says, so sorry it was necessity that brought you here, but nevertheless glad you found us. There is much good information and support here.
Welcome Cindy, My ex-husband, who has lived with me since his diagnosis, has Familial EOAD. Chuck is 55 this month and I am 54. Chuck was diagnosed 5 years ago. We separated a few years before his diagnosis. I know how hard AD can be on relationships.
His family has been involved in research for over 35 years. So we knew a long time ago that the disease in his family was EOAD. He was tested for the gene around 9 years ago and has had obvious symptoms for the last 6 years. I was devastated when we found out he had the gene because I knew Chuck would get the disease and our daughter has a 50/50 chance. I cried the entire day. However, Chuck and I have moved to acceptance; we try to live one day at a time and enjoy the time we have together. We find that if we do that we can manage. From talking to other people, I think we were lucky in that we did not go for years trying to figure out what was wrong and trying to get a diagnosis.
You are on the right track with finding support plus looking to get your finances in order. The family history and diagnosis made it easier for Chuck to get disability and to get onto Medicare. However, dealing with Social Security can vary from office to office. While we did have to hire a lawyer, other people have had no problem. Since Medicare has a waiting period, I would look into that right away with an elder care lawyer.
Chuck started on Razydyne and Namenda immediately plus a number of supplements. These noticably helped his symptoms. His older brother (as well as cousins) has EOAD and his wife passed on advice from his brother's doctor (an expert in the field.) As someone mentioned above, it is difficult to get into clinical studies if the person with AD is under 55. However, involvement in studies at an AD medical center will give you access to the most knowledgable doctors.
Chuck's own attitude helped us the most. He became involved in DASNI, the Alz Association, a local Alz group, speaks for early-stage orientations and facilitates an early-stage AD group at a senior center. This has helped us with feeling we are not alone in this. We have met some very impressive people who are not taking the diagnosis laying down and are advocating for others. Their attitudes really inspired us.
This is the best site I have found for spousal caregivers since we started this AD journey. You will read a lot a great advice. There are some very wise, nurturing, amazing people who post here.
bless you ,dear cindy, you have come to the right place for advice,comfort and support. this site is my lifeline. i don't know what i would do if i had not found it. my husband also has eoad. he is 52 and i just turned 53. we have 3 children and 2 grandchildren. they are the light of our lives. my husband was a fireman for 20 years. he retired in 2001 and did not do well with retirement,as i look back,things were happening even before that,not closing doors,not listening, and things in our personal life changed,of course i didn't know what to think, but i never would have thought of ad, until things started getting worse, and then we had to convince the drs something was wrong. after all the trips to different specialists and tests,the last one being a pet scan,the results were in. we already knew in our hearts but to hear it was devastating, as you well know. my husband has no one in his family with ad, but his paternal grandmother had some type of dementia at a young age,i fear it was ad, but i pray it was something else,i also am terrrified for my children and grandchildren. i can certainly relate to your story. we got our official dx right before christmas of 06 and i went through the holidays without telling him,although our children knew. his birthday is jan.1st and i just couldn't tell him the final results until he asked me. when he did,then i told him. like i said,we both already knew,we were just hoping it was something else. this site will help you greatly,in more ways than one. the people here understand what you are going through. there are also some here that have spouses with eoad. that was one of my problems,no one knew anything about a younger person having ad. i felt so alone and lost,not that i would wish this on anyone,but i found the right place after searching other sites that i was not satisfied with. may god be with you and your family. jav
I wanted to emphasize the reason I suggested that you start with the "Voices of Alzheimer's Disease" ... I think that sometimes, we get too wrapped up in the symptoms, the tips for dealing with them, the stages, the fear of the future, to pay attention to the now, and to our beloved spouses.
There is much to learn, true, but there is time in which to learn it. And one of the very most important things to learn is how to continue to have a loving relationship with your husband. He didn't suddenly change just because the diagnosis became official. He's been building toward this point for a long time. He will change, true, but probably slowly. You can learn how to continue to communicate with him, how to make him feel safe and loved.
Books such as "The 36-Hour Day" are for the late stages, and they can be so ... impersonal. While my husband is still in the relatively early stages (he is a solid stage 5, hints of stage 6), I find books such as "Learning to Speak Alzheimer's" by Joanne Koenig Coste much more rewarding. I also liked "Speaking Our Minds" by Lisa Snyder. I haven't read "He Used to Be Somebody" by Beverly Bigtree Murphy, but I've read every syllable of her web site, which is awesome. I'm going to get (when I find the time ...) the books by Ann Davidson. (Which I will order through this web site, so that Joan will get a teeny tiny commission to help keep this site going, thank you Joan.)
You will read much about the pain, the grief, the loss on these message boards. That's very real. But we must try as best we can not to spend so much time looking at what we've lost that we don't see and enjoy what we still have.
It's much harder for some of our family here, because their spouses are suffering from some of the worst symptoms, rage and aggression, severe agitation.
This does NOT happen to all AD patients, or even to most of them. We post about these problems so much simply because when it does happen, it is particularly painful and difficult to deal with. But you may never, ever have to face this. Two-thirds of AD patients never have these symptoms at all. Even those who do develop them can be helped with the appropriate medicines; and the symptoms are a stage that they go through, and go away again.
Joan once posted an essay by Richard Taylor, who has AD. I can't find a link to it right now, so I'm going to post the whole thing. It is long enough, it will probably take two or three posts, but I think it's worth the reading.
You Say goodbye And I say Hello Alzheimer’s Foundation of America Conference, Miami, Florida 2008 Richard Taylor
Everyone is someone, not simply anyone Treat everyone the same, by treating them different
I am Richard Taylor, I live in Houston Texas, and I have been living with the diagnosis of Dementia of the Alzheimer’s type for the past 5 years. Currently there are about 9 million people living with one of the diseases of dementia. Of those 9 million citizens, about 5 million of us have one of the diseases of dementia called Alzheimer’s disease. I am one of approximately 500,000 of those people who are under 65 and are in the early stage of the disease.
I speak to people such as you because I want others to see, and feel, and know, and understand, and appreciate that I am someone. Unfortunately, in the eyes of many others, sometimes even the eyes of caregivers, I am seen as less than a complete someone. Just because my memory is failing me, just because the hippocampus region of my brain is failing, just because I don’t always think like you do, nor do I remember as much or how you do, please, please know that in my own eyes, and I hope your eyes I am still a whole and complete someone. I am still me: I am still Richard. I am still grand pa, and dad, and friend, and whole and complete human being.
I am in my mind still and have always been a complete person. I am not becoming any less a person simply because I cannot remember like you, talk like you do, or think like you do. I am not becoming more and more defective. I am no nearer a date certain death than are you.
I know many want me to be who I was yesterday, or last year, or the last time they saw me, but I cannot be, nor do I any longer want to be. I have ceased looking back over my shoulder at who I was, and now spend most of my time working on who I am, one day at a time. I have a disease that is organically altering who I am, how I think, what I say, and how I see and react to the world. I am changing both from the process of evolution, I am a human being who is growing older, and from the process of revolution, I have a cognitive disease that is fundamentally and irreversibly alerting the ways in which I remember, process information, and see myself, despite all this change between my ears, still, Today, this moment in time I am Richard. I am still and will continue to be until the moment of my death one of the every ones who is someone.
Please do not mourn the fact I am not who I was, or you want me to be, or we both miss this moment when we focus on yesterday or last year or twenty years ago. I and 9 million others with dementia are progressively missing more and more of today. We miss living together today, we miss the chance to love, and to laugh, and to be all we can be today, when we are mourning who I was.
I ask each of you and all of you to be with people with dementia as they are, and who they are today. It is all well and good to reminisce with us, to make contact with us by encouraging us to share memories with you from our pasts, but I too want to live in here and now, and to accomplish that I need your support.
I am having more trouble now than you are accomplishing this life-affirming goal. I do not always understand what is going on around me, why others are doing this or that to me or with me, what happens next, what happens after that.
However, if I want to stay centered in the present, if I want to fully experience your love, the world today I need your support more than ever to live in this moment. The unintended consequences of many loving and compassionate acts from many loving and compassionate individuals is to disable me from being myself, and becoming who you want me to be, and/or who you think I should be.
I am me, and while I’m not always as good at explaining that to you, while my dementing disease may inexpiably change the me I was yesterday or even a moment ago, I am still a whole and complete ME. I may be more agitated, I may be silent for longer periods of time, I may be more difficult to understand, but I am sure you can understand my need to understand I am still me. I am still an adult worthy of and a recipient of your on continuing love. I am still worthy of, I still want to be a recipient of your forgiveness and love.
I am lonely, sometimes for who I was, sometimes because I am losing the ability to understand myself. Nevertheless, I am to the end in need of a sense of presence of myself and what is going on around me. Help me break down the barriers the diseases of dementia place around my mind and my heart.
You can witness to and share your love with me. My heart still hungers to feel love, I still want and need to give my love to a world that I just don’t understand like I did prior to developing this awful disease. You can listen and learn who I am today. It is good to know who I was yesterday and in years past, but what really counts for me is to first, last, and always know who I am today. I want to better know that, and I need your help to understand and achieve that feeling and knowledge.
You can share with me your joy in knowing that you are loved, and you can bring joy into my life by loving me. You can help me communicate my own joy of living. You can help me understand how to forgive myself and others. You can support my efforts to live in the moment, this moment, today, the here and now.
In addition, even as I near the apparent end of my struggle with this disease you can treat me each moment as a whole person. Am I or will I ever be half-empty or half full? That is the wrong question to ask. That is the wrong way to view me. That is the wrong way to treat me. I am you, only I am a different you. I still need, want, and deserve a sense of today, a sense of dignity, the right to be treated in a truthful and straightforward manner, the right to my personal privacy.
I don’t claim to know what it is like to have a dementing disease in the minds of everyone, I can only really speak for myself, but will you please consider my and ask others in shoes similar to mine if there is in their mind and heart truth in these words. Richard
lol yes you can... it is right under the place where you placed your profile picture. Its the icon one.... it is harder to get the size down though! try and try again lol
In an effort to keep topics together, I am moving the "picture questions" into the "questions about posting pictures section. If anyone has any questions about pictures, please refer to that section.
Thanks so much everyone. The last 2 days have been very hard and filled with lots of crying. Bruce is also 47, someone pointed out I forgot that info in my original post.
We've told the kids and some other close family. Everyone is devasted. But I know everyone will be supportive. Bruce's brother, who is 44, is considering being tested although he shows none of the signs that my husband did within the last 3 years or so. Our sons have decided for now not to be tested to see if they carry the gene. Our daughter hasn't decided. I think they are too young to be worrying about this now. None of them is even close to being married or having children so I feel like they can maybe wait until that time comes to make a decision whether they want to know or not.
One thing that's been hard is that we thought this AD issue was behind us. Back in the late 90's, I read somewhere about a test that could be done to see if you carry the gene that causes AD. (its turns out btw, that Dr Daniel Pollen who did the recent testing on my husband is someone who helped develope this test) Because of Bruce's family history, he decided at that time to be tested, but it was just a test ordered by our primary care doctor. The tests came back negative! So the last 3 years or so that we've been experiencing the memory loss and confusion, I kept telling my husband, you can't have AD, remember you were tested back in 1999. When we saw Dr Pollen at UMass last month I mentioned this and he looked at my husbands records. Apparently, not a full battery of testing was done then and obviously this time the complete testing was done and we have a diagnosis of EOAD. So the last 9 years I feel like I had a false sense of security and have been robbed!
A lot of you in your posts mention a lot of medical terms and such that I am not familiar with yet. I know I will become more familiar in the days and weeks to come as I want to learn as much as I can about this disease and what it will mean for my husband, me, and our children. I have been doing some research online, have ordered some books and Dr Pollen is working on putting us in touch with a doctor at Mass General in Boston regarding a trial for people under age 50 with EOAD. That sounds promising. We meet with him in 2 weeks and are making a list of questions and our children plan on going with us with their own questions. We have an appointment with our attorney next week. So much to do.
In an email from the doctor he mentions my husband has just been identified as carrying a pathogeneic PS1 mutation. I can't find anything on this at this time. Does anyone know what that term means?
I personally am still just feeling devastated. A huge sense of loss. I know I need to move past this soon and quit being so negative. We are high school sweethearts, and will be married 27 years tomorrow. He is my first and only love and I can't imagine living without him. I know I need to get back to living and stop thinking about the dying part. My chest feels so heavy, I cry on a dime and I feel hopeless! I need to quit planning the dying part and live the living part! I will find a way.
Thank you all again for your words of encouragement, your advice and your support. I appreciate knowing there are other people going through this with me.
Sorry, I can't answer questions about what you are going through. It must be so hard at your age and with children the age of yours. However, I just googled "gene PS1" and a long list of articles came up. I didn't read them, but I did glance at this one.
http://www.genetichealth.com/alz_genetics_of_alzheimers_disease.shtml Maybe you can find some useful information.
I'd like to say that right after the diagnosis, the devastation is worse, but what happens is that you get busy getting educated on AD, then making certain all the legal and financial matters are covered to protect both of you, then dealing with the everyday living and coming here for answers to your questions, and you get numbed a little bit. You keep looking for that spark that is still there, and as long as it comes back, it is a gift. We have all had to build walls around our minds and hearts as best we can, so that we can deal with this insidious disease which tries to destroy our spouses and our lives. There are some things that you read here that you just know won't happen to you, and you might be correct. Not all AD patients have all of the symptoms (anger, rages, violence, aphysia, etc.), but you will find help here with the symptoms your husband does have. Remember, they will pass. Other symptoms will then appear. And you will find help here.
It is doubly hard with children. I am so sorry! There are others here who also have children who can help you.
We are here for you. We will hug you, hold your hand, give your our advice, suggest websites to help you, and tell you how we coped with each event that occurs if you wish. By having Joan's place, we have our sanity and each other. Welcome - though we are so sorry for the reason you had to join us. Thank you for coming.
jebridan, I'm so sorry. I can't help you as I haven't had to deal with anything near you full plate. I just want you to know I willl be think of you often and hope you find time to post. In reading your post, my eyes are full of tears and my heart breaks. Take care of yourself too..Lee
Jebridan, Do not give up hope! It is wonderful you will seen at Mass General. You will have access to the most cutting edge science and doctors. Here is a link from the Alzheimer Research Forum which explains the presenilin mutations. http://www.alzforum.org/res/com/mut/pre/
I mentioned earlier in my post that my husband's family has the Presenilin 2 mutation. I know the distress your family is going through facing this. We cried alot at first and still do occasionally. However, we enjoy life and cherish the fun and love we have with each other, our family and friends.
Chuck had the testing for the PSN 2 mutation in Seattle. OHSU in Portland Or. recently contacted us about a clinical drug trial. I haven't seen the paperwork yet. We will be going to Pittsburgh in Sept. to see Dr. Klunk. He has a PET scan study going on which involves families with PSN 1 and PSN 2. I don't know if you will be able to link to it but I pasted a link below to a NY Times series on Alzheimer's from last year. The article talks about the PIB compound. This is the study Chuck is participating in. The Rarest Gene video is of Chuck and myself.
I know people on this site talk about alot of symptoms that probably are very frightening to you. (They are to me.) But Chuck has been progressing slowly. He is not violent, abusive or argumentative and we enjoy being around each other. In fact, Chuck has a pretty good sense of humor still.
Keep in touch. Our prayers are with you. Let me know if your husband would like to e-mail Chuck and I will send Joan Chuck's e-mail.
Jebridan, i am just now finding time to sign on & read posts -- I too want to welcome you to this site & just encourage you to do as others have said and "live" in the now. Of course, educating yourself, financial issues, etc. are extremely important too. My husband was diagnosed in 2004 with EOAD -- he is now 63 and I am 48. We have been together for nearly 26 years and married for 20. We have a dtr, age 24, and my step children, ages 35 & 29. In addition to what everyone else has said here, I would encourage you to get into a Support Group for EOAD...we called the Alz Assoc and then joined a group in Ft.Worth. (We live in Arlington, TX) We are no longer in that group because my husb has progressed to a point where we are no longer considered "early onset", however, we made so many friends within the group & continue to be a part of many of their lives. This disease is difficult and challenging -- it helps to have local friends who are going through the same things you are to help you along, cry with you, laugh with you, and encourage you. And the Alz Assoc leaders are wonderful as well. I remember the "early days" of diagnosis too and it was just so devestating. But you will find that as you move forward, you will gain strength and hopefully the research you get involved with will make a difference for your husband. I was 22 when I fell in love with my husband...he's all I've know most of my adult life...altho he's prob in a stage 6, we still hug, kiss, and he still calls me "beautiful"...it's been over 4 years since the diagnosis. I'm not saying our days are not challenging, but when you love someone as you have described loving your husband, then it does seem to make most days much easier to cope with all that happens. Take care of YOU as you travel along in this journey...you will need all the rest you can get down the road. Praying for you & am here for you. Much love, Debbie (a.k.a. Nat's mom)
Jebridan - I forgot to mention this but as I was thinking about you this morning, it came to my mind about a book that was VERY helpful to me in the early months of the diagnosis...Right after my husb was diagnosised, we had what I called a "God" moment in that we NEVER watched PBS television, but right after his diagnosis, i was flipping around with the remote one evening & a PBS Documentary called "The Forgetting - A Portriat of Alz" came on...we laid on the couch, side by side as we so often had done in the past, & watched the movie. There were tears and a realization of what was to come, but it caused me to get in gear & really learn more about the disease. I got the video so when we were ready to tell our kids, I could share that with them...it never worked out like that, but more importantly, I got the book they referred to in the movie quite a bit. It's by DAVID SHENK, and called "The Forgetting -- Alzheimer's Portriat of an Epidemic". I remember reading it & weeping alot, but thankful for the information so as I dealt with our doctors, I was able to have knowledge about what the disease was, what would happen, etc. I think you'd find it most helpful. Continuing to think of you & your road ahead, and praying for you...Debbie
I don’t post often but feel compelled to respond to your post. First off I am a bit confused by your post. Did your husband originally get tested for the PS1 mutation or was it APOE 4? Unfortunately most doctors & some neurologists are unaware of the familial genes and only order test for the APOE 4 gene, which is typically associated with late onset (although some people with this gene get AD before 65). The PS1 mutation is one of the three genes currently identified with eFad- early onset familial Alzheimer’s disease, which affect less than 1%. It is the most common of the three and if he has this gene your children will have a 50% chance of inheriting it.
In my opinion it is best to educate yourself and your family about the disease. Going to specialists in the field can only help. It would be wonderful if your husband could participate in a clinical trial- please don’t take no for an answer if they say he is too young. You are his best advocate! My husband is in the Elan/Wythe AAB trial and will receive his second infusion this month. Please feel free to contact me direct as I have spent many hours researching these future treatments for AD. Medications I would hope he takes would be Aricept & Namenda. I would encourage exercise and supplements such as DHA Omega 3, increased vitamin E and eating fish twice a week. We bought my husband Nintendo’s Brian Age game. He has been playing it daily and sometimes his brain age is as low as 36 other days it may go up to 70.
I understand your feelings of hopelessness and depression. I felt the same way as you are feeling now. I try to take it one day at a time encouraging & supporting my husband. I don’t want to look back and regret that during the early stage I was so consumed in fearing the future that I didn’t enjoy the moment.
Trish
Lizabeth- could you please contact me via my email at trish58@gmail.com? My husband is following in Chuck’s advocacy career path. I believe Chuck could give him advice on this upcoming year’s ESAG so I would like for them to get in touch with one another.
Cindy: Last night I tried to respond, but took so long and wrote so much the computer kicked me off, so I'll try to be briefer today! FYI, my husband is 56, diagnosed at 53, and our daughters are now 18 and 21. 1. Call your local Alz. Association---best advice I got. I signed up for an intensive "caregiver" workshop that was probably more than I need to know, but met a lot of people, learned alot, and got to the know the Assoc. staff, so @ a year later when they decided to start a "young-onset" spouse support group, they called me to help. I also read everything I could get my hands on, both from the libraries and on the internet. 2. If and when the need arises, see a therapist FOR YOURSELF! Second best advice I got. I did for @ one year after the diagnosis, mostly to deal with the verbal abuse from my husband PRIOR to his diagnosis----he was much better after the diagnosis and of course now I know what we are dealing with. Now I'm in two support groups, and my therapist is just "on call" when I need him, which isn't too often. Also, my college daughter sees a counselor at her school. My high schooler says she's okay, but she does know she can go to one if she needs to, and her teachers, church youth group leaders, etc. keep an eye on her. Also, most people on this website will tell you that eventually a spouse caregiver will need an antidepressant, so don't be embarrassed to ask for one if you think it would help. 3. Get your husband into a clinical trial if you can. My DH is apparently in the same one Trish mentioned. He LOVES the attention from the staff, he feels like he's "contributing" something, and I love the fact that the top neurologists in Houston know us on a first name basis. 4. See an attorney ASAP to get your wills, and powers of attorney in order. You may also need to start working with your husband's corporate attorney about the store situation. AND, with or without an attorney, get started on the social security disability stuff if your husband is eligible. The sooner he qualifies for that, the sooner he qualifies for medicare. 5. Finally, the first month after my DH was diagnosed I cried all the time. I had the luxury of going to my office, shutting the door and crying all day. My secretary would even bring me lunch! Then I would cry all the way home...... I'm telling you this because it is NORMAl and it DOES get better. (Not the disease of course, but your ability to cope with it!) Most of all, please know that you are NOT alone. There are now @ 8 regular members of our young-onset spouse support group in Houston, and of course even more of us on this website dealing with young spouses. Hugs and kisses from someone who knows what you are going through!
For anyone who has the dominant inherited form of early Alzheimer's, I want to bring the DIAN (Dominantly Inherited Alzheimer Network) to your attention. http://dian-info.org/
I know DIAN is enrolling families with the PSN2 and PSN1 mutations in the study. These are early onset AD mutations that are autosomal dominant.
I am sorry that you received such a diagnosis. This is such a devastating disease but to get it in your 40's is even more devastating! Please come and talk to us as often as you can because you will find the only people that really REALLY understand what you are going through. You get on crying, they understand. You get on screaming, they understand. What they are really good at is information, without this group I wouldn't have or it would have been harder to understand my DH an all the things that he is going through. I am still learning and he has been dx since 2009.
Jebridian. Wish you were not here but since you are welcome. EOAD for my once brillaint wife here too eight years now. Over the years I found this site to be a window into my future. Many different circumstance but always a consitant stream of emotion and reality. I learned early on to always present to my wife a happy me and a positive outlook. It was not natural for me but over time I learned it. This has been the hardest thing of all especially in later years. I worked hard at it for I didn't want my wife to be afraid. I learned the importance of that here on this very site. It's a hard road but you and the rest of us will get through it. This is a great place to learn and vent and always be welcome. Best Wishes.