I am new to this message board, and new to the idea that my spouse was recently diagnosed with early AD at age 59.  I am hoping some of you who have dealt with the challenges of such diagnoses might have some good advice for us.  

My spouse is still functioning well, always was a bit absent minded, and it seems reasonable to assume that for now, others may not have noticed anything out of the usual. However, our immediate family (i.e. kids and me) has noticed forgetfulness that seems beyond the usual, even considering age, and even given the specific personality. And testing has shown, alas alas, it is indeed not just ordinary aging.  

We are still in very raw state of shock/fear/horror of a recent diagnosis. Talk about your world turned on end... but you know this. And one thing among many, that we're trying to figure out is when and how to tell our kids (university age).  Or anyone else, for that matter.  My gut tells me we need to habituate to this new reality ourselves before we tell anyone else, including our kids (though if they ask, I will tell them the truth), but meanwhile it is such horrible burden to bear silently.  How long did it take you to "come out" with this information, and who did you tell first?  Do you wish you had done things differently? I am interested in things that worked and that didn't.

I told my kids, all were post college, as soon as possible. I have six kids and so waited until three of them were together with me at Christmas. I phoned the other three that evening. Tears were plentiful. I was diagnosed early in December. I had told a few friends, but waiting that long to tell the kids was, for me, the worst. 

So, after Christmas, with the small kids all in bed, I gathered the adults and we talked. They were then, and continue to be fantastically supportive. They also took it upon themselves to get educated, as did I.

In my opinion, if you wait until you get your heads wrapped around it, it's too long. Tell them now. 

Both of you, go to alz.org and click and click. Go to your library. Do have your hubby come here. You do the Spousal board. 

Several of us here attribute our long stay in Early Stage to our proactivity, especially in our following BEST PRACTICES:

1. TAKE MEDS AS DIRECTED.

2. STRENUOUS PHYSICAL ACTIVITY. 

THE GOAL IS TO GET YOUR HEART BEATING AT A FASTER RAATE THAN NORMAL. RESEARCH SAYS STRENUOUS EXERCISE BUILD NEW BRAIN TISSUE. 

3. VARIED AND STRENUOUS MENTAL ACTIVITY. 

4. MEDITERRANEAN DIET. NO SMOKING. I TAKE ANTIOXIDANTS AND OMEGA 3. SOME PEOPLE TRY AROMATHERAPY. 

5. CONTINUE OR INCREASE SOCIAL INTERACTIONS. MOST OF US REPORT THAT CROWDS AND NOISY SITUATIONS ARE NOT GOOD FOR US. 

Dear Blues, 

First let me offer you a southern "Bless Your Heart" and a hug. 

As far as telling I waited months to let it soak in in my mind first. My husband knew first. I was being tested for Multiple Sclerosis not ALZ. so I was shocked when the Dr. said Mild Cog. Impairment. I just looked at her and said what are you gonna call this/, Dementia she said yes and I left. 

She knew it had not hit me. Next I told my mom who denied it all the way and still does. 

My grown children I told them later and each took it sadly but was assured that I would fight as long as I could and use any weapon in my arsenal. 

I am a retired nurse so I am always researching and trying new things. 

I came to this web site and was treated kindly; However,  I can be sensitive so when I began to explain my Cog testing some site members questioned my Dx. as it was not comparable to theirs.  

I took offense and did not participate for sometime. I trust my Dr. and feel she is giving me the best care possible.

So my point is tell who you feel you must. It is ok to let this just "sink In" 

Trust in your still small voice within to guide you. 

Best wishes,

Lisa Ramey

Lisa, I don't remember your story, but if you have multiple sclerosis, know that cognitive impairment is a known  complication of MS. I have a book by a man with MS who goes into detail about it.  I'll try to search for the title for you.  

Many new members talk of feeling offended.  I felt offended at first, when I was advised to stop using the stove.  Nevertheless, It was the best advice for me, and saved me from possibly burning down my home.   

From what I have observed, people with memory loss do not all receive a thorough evaluation.  Only ~10% of memory loss is due to medical and potentially reversible causes.  When a new member posts, we don't know what testing they have had.  We just don't want anyone to miss something that could be treated and possibly reversed.   

I was a physician in my former life.  It took over 20 years before I got a diagnosis of cognitive impairment nos and received treatment and medication specifically for my memory loss.  My memory loss is due to medical causes, as far as can be determined.  No doctor did a thorough evaluation until I met the neurologist I have now.  I have had other neurologists, but they did nothing for me, just told me there was nothing wrong with me.  One neurologist even said I was faking.  How's that for being offensive?  If there was nothing wrong with me, I would still be practicing medicine!   

I'm so grateful that members take the time to tell their experiences and guide and advise and support.  I need it, because I don't get it elsewhere, especially not from my doctors and other professionals.

Iris L. 

Dear Iris, 

A quick Thanks I do not want to high jack blues thread 

Lisa Ramey 

Mimi S., Thanks for your reply.  I realize that it could take a long time to wrap our heads around it.  As a mom, and perhaps as a mom to my particular kids, I just feel that urge to protect them while I can, given that they are still young enough to be figuring out what their own lives are all about -- i.e. not working, married, etc, not even done with their educations.  I wondered though if kids (especially) might feel -- if told later -- that they would have wanted to know sooner, so they wouldn't regret not making the most of opportunities to interact with their parent while things were still pretty normal.  

Maybe I shouldn't be asking this question on this particular forum as I'm not the one with AD, but I posted here because it's early onset and so I thought there might be more folks dealing with kids about the age of mine. 

Iris K., I am so sorry if I offended, not at all my intention.  We are definitely working on getting used to the idea of it's "just" being a disease, and I completely agree that having that perspective will make it MUCH easier to talk to others (and to deal with everything ourselves).  In a way, that is what I'm asking about.  It will take a us a little getting used to (we're only 1 week in to this!).

I will definitely be working on getting my spouse involved, thanks!

blues, I want to welcome you also. You're provably too young to remember a time when no one would use the word "cancer".  That is the place where Alzheimer's and other dementia's is and has been. Many of us are working hard to remove the stigma of an Alzheimer's diagnosis. Hope your family will come to a time when you can help fight for a cure. Please contact the Alzheimer's Association chapter in your state. They provably have great information, resources, support groups, and many opportunities to get involved in our fight for a cure. 

Not everyone has the same experience, but I was diagnosed 5 years ago and am still in the early stage, I believe because of best practices: Mediterranean Diet, Strenuous Exercise, Staying Socially Active, Taking Meds as Directed. 

Here's a site to find your chapter: 

http://www.alz.org/apps/findus.asp 

KayeK,  Sorry for getting us both confused. I didn't realize that a reply to a particular message on this message board was just added to the bottom of the string of messages in this thread, rather than being attached (somehow) to the message I replied to.  So I wasn't clarifying who I was replying to!  I was concerned I might have offended Iris K.   Now I'll start all my reply messages with someone's name.

I appreciate your comments. Your daughter sounds like a strong young woman and I'm glad you have her support. It reminds me of the Still Alice book (which I just read yesterday), in which the mom also develops a particularly supportive relationship with her youngest daughter, in fact, it brings them together.

Dear Blues, 

Sorry to hear about hubby's dx. I was dx in October and have not yet told all my family (my son's). When I am ready I want to be sure I can convey my dx in a positive,  hopeful, this is not the end of the world type of way. I have to be prepared with information to quash some of the pre-conceived ideas of AD that the general population have about this disease.  Hope needs to be conveyed to husband and children that many are staving off symptoms and living full and  meaningful lives and staying in the early stages. I found that hope here and I hope that you and hubby do also. Please do tell him about all the wonderful, awesome persons here living with AD. 

This is a rough copy of excerpt from the book I am writing: 

I am here to tell you that you may have run into me with your shopping cart at the supermarket today and not have at all seen me or noticed me as someone who may have Alzheimer’s Disease. I was not drooling on myself. I did not have stains on my clothing and neither did I appear untidy. I was not mumbling or staring off into space. I did not act bizarre, peculiar or strange. I did not react and shove my shopping cart back into you when you ran into me with your cart. Moreover, I may have noticed and thought about you more than you thought about me. I’m here to tell you that your perception of me and my dear friends is wrong. WE walk amongst you all the time. WE are as important and as smart as you. WE are vital, productive, beautiful, pretty, handsome, interesting, multi ethnic, cultured, sophisticated, intellectual and some of us are brilliant and extraordinary!  WE are here to tell you that Alzheimer's is not just your  grandparents disease. WE are your daughters, sons, aunts, cousins, mothers, fathers, friends, neighbors, clergy, lawyers, doctors, skilled tradesman, writers, artist', poets, philosophers, laborers, accountants, scientists and  teachers. WE are not all old. Some of US do not yet know WE have AD. WE have a voice and WE matter. OUR disease matters, and WE want you to know in all the ways in which this disease could matter to you and those you love someday. WE are strong and WE will fight to be heard and to have awareness and light shed on OUR disease!  

Blues, I was not offended  I was trying to help you, by helping you to change your perspective.  Alzheimer's disease has a stigma that it is shocking, fear-provoking and horrible.  The outside world will continue to believe that, but we who are dealing with dementia every day, cannot persist with these beliefs.  No, I'm not saying that dementia is not something that we wish we didn't have.  But we are LIVING with it, and working to address it's hold on us.  Yes, it is difficult.  It is VERY difficult.  But we can meet the challenges.  We can't live in fear.  That's no good for us. 

Here on this board is where we learn to live our lives with hope.  Hope for what?  Hope that we can still live fulfilling lives, even with a devastating diagnosis.  Hope that we can still have good relationships with the people we love.  Hope that we can be in charge of our lives as long as we can.  Hope that our families and the people around us will treat us with dignity.  Hope that our family will carry out our wishes if we get to the point we can't speak for ourselves.  Hope that we can still live even if everyone around us abandons us.

I have hope.  I fell into a deep depression in 2010.  The encouragement of my fellow members helped bring me out of it.  I now have hope.  Loss of hope will kill a person.   

One of the inspirations I received from an emeritus member, SnowyLynne, was her advice:  Get your affairs in order, then live your life!  I learned from her, to help myself take back my life from the depths of depression.  Depression if fueled by negative and depressing thoughts, BTW.  Negativities are all around us.  We have to block them.  I have to block them. 

Patients are not helped when people around them sing the blues about how bad dementia is.  Living with dementia is hard enough. My dx is not dementia, but cognitive impairment, and I find my life very hard.  If it is hard for me, how much harder is it for a person already with a dx of Alzheimer's?   

Another emeritus member, CathyJM, was advised by a social worker, that her job as care partner was to make her LO's life comfortable.  I took inspiration from those words, because it was telling me that my life does not have to be made harder than it already is--I can reject things that make me worse. 

I encourage care partners to visit our patient board and participate.  But please, encourage your LO with dementia to join us.  This is where patients find support and hope.  It's not in the outside world. 

Iris L. 

Right on, Ilee!

Iris L.

Iris L, I have to say I congratulate you not only for finding hope but also for writing so well about these issues.  My spouse also has MCI, and feels pretty normal for now, so life is going on as usual in most respects, especially the part of life that others see.  He's the kind of person who seems to be happy avoiding thoughts about bad news, but I'll work on him to find the postings here that show a constructive and helpful attitude like yours!  

In my personal experience, telling others has been nothing but horrendous.  That's why I don't tell anyone anything anymore.  Everyone reacted with great negativity.  As you can tell, I can't handle negativity, because I am prone to depression.  It's hard, being so private, but that's what I need to do to keep my sanity.

Iris L.

Dear Blues, Be sure to come over to the Partner's board and get to know everybody.  It helps so much.  I often read the EOAD threads as well because my hubby has this dx and I want to learn as much as possible from our amazing patients. I sure remember when we first heard the words Alzheimer's and dementia from our Dr.  It was so overwhelming and scarey.  We both were stunned and hurting.  I went into proactive mode, studying voraciously.  He kinda checked out, needing time, I believe. We told the kids and closest family only, as he did not want to share with friends yet.  Still doesn't much, and that's okay.

Curiously, pretty much Everybody poopooed it.  Downright denied it was happening.  Challenged me outright.  It was unsettling and hurtful.  So don't be alarmed if that happens.  They will come around.  It is a hard thing to wrap your head around.  You don't have to figure it all out at once.  It is a process.  There are still lots of good times to share together as a family, and things you can do to help him (and you!) stay healthy longer.  Eat well, stay active, keep learning, enjoy activities like church, music, art, pets, rest well.  Prepare for the future, but live for today, each precious day.  We will help you with the support of friendship and ideas!  Iris is right, hang on to Hope.

After reading the great responses you received, ( Ilee, Iris, and friends!) I felt like I'd been to church!  So inspiring!!! Aren't they something!  I'm glad you found this group.  They are the best.  Take care, B

Iris L, I have to say I congratulate you not only for finding hope but also for writing so well about these issues.  My spouse also has MCI, and feels pretty normal for now, so life is going on as usual in most respects, especially the part of life that others see.  He's the kind of person who seems to be happy avoiding thoughts about bad news, but I'll work on him to find the postings here that show a constructive and helpful attitude like yours!  
 

 ouch... 

but I'll work on him to find the postings here that show a constructive and helpful attitude like yours!   

The "ouch" is from a patient perspective: 

Persons with dementia have the right to know everything about their disease and in the early stages are more than capable of discerning information independently of their caregivers.  It is integral that the plans and wishes of the person with dementia for care in the the later stages be made during the early stages. We should not be "worked on" and censored by our caregivers or  made to feel that we can't handle the truth (which I know is not your intent). Intense emotions and frustrations do manifest as a consequence of losing our cognitive capacity and ability to function in ways that we used to take for granted. Shock, anger, denial grief, sadness and fear are all part of the stages of grief that we experience and we need to know that it is okay to feel and freely express these normal feelings around our diagnosis. Caregivers and loved ones naturally experience these feelings also but the patient perspective is different from a caregiver perspective.  

I know this is all so new and there is so much to learn post diagnosis. It is natural to want to protect your husband and do everything right in caring for him.  It is a process and there is a learning curve and we here understand how much love and good and pure intent you have. The fact that you came here to learn from us speaks volumes of your love!  

We here on the young onset board are all in our own way processing all that happens to us on a day-to-day basis. I purchased gift cards yesterday and after I checked out I stood in the middle of the store for several minutes trying to figure out what I was supposed to do and where I was supposed to put the gift cards. I was staring at the cards and I didn't know what to do with them put them in my purse or pocketbook, hold them in my hand? There were a few persons in the store watching me and i just stood there. This may sound like a little thing to someone who does not have dementia but for me it was surreal. I wanted to cry and hide! I ended up keeping the gift cards in my hand. It seems that there are always these moments cropping up where there is something you once done w/o difficulty that presents as a problem in the here and now and it just hits you!  

llee, I agree that "worked on" wasn't maybe the best choice of words. I meant I would try to encourage him to investigate these discussion boards (nothing more) but I'm not optimistic that he will have the interest, and I posted something separate about that on the caregivers forum. As for him being involved in other decision making at this time, he and I are in full agreement that he should be, so no problems there. 

Your vignette about the incident in the store was very real to me: I can imagine (but of course not really know) you you felt.  

Hello, 

I am typically found on the caregivers board but saw that Iris had posted so I clickedn and it brought me here. I learn so much by reading from different perspectives.

Our relatives were never really close.  All aunts and uncles are deceased expect for my uncle which is my mom's brother.  He's 80 or so.  Mom is 86 diagnosed in 07 but likely had onset in 05. He knows mom has AD but I reveal nothing more except that she is happy (which she is)- he knows nothing more about her abilities, limitations etc etc or my heartache.

I have learned to play cards close to my chest because I believe some people truly care while others are simply nosey.

What I decided, which may or may not be a consideration for any of you, is that I am respecting my mom's privacy, my sort of HIPAA for mom. I think she agrees, based on previous experiences, that we don't want the nosey's.  The people that matter will be in and will remain in our lives and they will come to know what is going on my their presense and not by reports. Of course, this will be different if you have children, spouses etc.

I have also decided that mom's obituary will not state the cause of death (nor will mine and thus far i have no AD dx) nor will memorial cards or other printed material.

First and foremost, get the affairs in order.  Name 2, 3 or even 4 POA's so that there are back ups in the event the first is unable to serve-no joint POA's -

Read the discussion in caregiver forum re insurance co not honoring a contract!

Finally,  my mom was a good citizen and parent but she was not always easy to get along with-she has pleasant dementia and I am very lucky in this sense as I assume she is-I have not researched this but maybe we should-there is the hope that more people can experience what mom has and for this there can be hope? (she was not pleasant during stage 5)

 http://www.healthcentral.com/alzheimers/c/42/44486/newsweek-describes

pleasantly demented article

Welcome back to the patient board, bela.  I think you have been here before, correct?  What you posted is the answer I needed.  I posted about feeling odd because I always tell my relatives back East that I am fine when they ask how I'm doing, when I am not actually fine, but dealing with cognitive impairment and my other illnesses.   I don't think they are nosey, but asking out of politeness.  There is nothing they could do.  Many are older than I, and need help themselves.  I think I will just continue to tell them I am fine.   

My former friends let me know how they felt about me when they abandoned me. 

In my obituary, I want all my illnesses listed.  I want others to know what I was dealing with.   When I was diagnosed as having systemic lupus, the rheumatologist told me this is familial, and asked if anyone else in my family has lupus.  I told him no, but since then, two younger female cousins have developed systemic lupus.  It appears I am the initial patient in the family.  Spondylitis is also genetic.  Others may come along who could benefit from this family history. 

Iris L. 

Bela, thank you for sharing the article about "pleasantly demented."  I never heard this term and not much came up when I searched for it, other than the Newsweek article.  Several care facilities choose to call themselves "Pleasant" care facility, it seems.   

It brings up food for thought.  The article and most of the comments are from 2008.  I'm going to post the original article on the "I Have Alzheimer's" board. 

Iris L. 

Hi Blues. My family is in a similar situation. My husband was diagnosed with early onset AD in August at 48 yrs old, but had to leave work in May. Through the process of getting to a diagnosis, i met with a counselor through the Alz association. She was very helpful to me in understanding when to share with others....especially my children who are 17 and 19 years old. Although i kept my children informed of my husbands testing....as they could obvioysly see changes in my husband and the stress among us....we waited to share the diagnosis until it was confirmed in August. After telling them, i brought them with me to talk to the Alz Counselor soshe could help educate them about the disease and make a connection to them in case they ever needed to talk. She also shared that familes who openly talk about it fare better than those who don't. I have followed her advice all along...it doesn't ease the pain, but my goal is to keep my family tight.  I have openly shared with others mostly because this experience is too big to keep quiet and handle it myself. In making that decision, some people surprise me in a good way and others disappoint me. I honestly think that would happen no matter what choice you make. I also felt I needed to share because my husbands abilities were markedly changed and I knew I needed help. 

Keep connecting....this is a long journey and we all need each other.

Peter5, thanks for your replies (and thanks everyone else too!). 

You said you were glad you waited until things became obvious before you told others.  How obvious were things when you told your kids?  Was your spouse still working?  Had your kids' relationship to their parent (mother?) changed in some important ways?  Was there any question for you that your kids might inadvertantly spread the news faster than you wished?

GIven that the progression of AD is long and gradual, I am wondering if some people -- who get their diagnosis really early in this trajectory -- have more flexibility to hold off on telling others, even close family members.  In our case  (and doctor's comments support this notion) we caught on to what's going on with my spouse very early: my spouse is not demented now, but has mild amnestic cognitive impairment, and biomarkers for AD. It manifests  (at this point) only as minor memory lapses for recent conversations, not out of line with an "absent minded professor" persona (my spouse actually is a professor, and has been kind of absent minded his whole life!).  There is no question of stopping work at the moment (talking about areas of professional expertise is no problem, performing at work is fine), and our home life rhythm has not changed a bit in any outward way (except we're very strong on following 'best practices'). No medications at present. In short, I would certainly feel no need to tell casual acquaintances anything for now, but my worry is also that even if I opted to tell just a few close people (family, close friends), once the info goes public in any way, one cannot rein it in.  I wonder if my kids could even keep it to themselves, as they might feel a need/desire to confide in their own friends.

When I first posted here, I felt horribly pressured to NOT tell people until I really had figured out if I wanted to do so (which I still haven't figured out), and yet WANTING to tell someone just to have an outlet, other than my spouse, for the roil of emotions within me. I know I can call a Care Consultant (and I have done so), but they wouldn't know me or my spouse/family: I wanted to confide in someone close. But in the last 3 weeks, I've been able to largely sublimate that "need to tell" someone. This gives me some time to listen to you and others here about their experiences, which is helpful.  Anyway if you have time, I'd be glad to hear more re answers to my (bolded) questions above.