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I am NEW at all this
Simply Kristina
Posted: Thursday, March 27, 2014 11:34 AM
Joined: 3/22/2014
Posts: 8

Thank you for taking time to read my post.

I am 48 years old and was recently dx with younger onset AD. All the fears are in place turning my world upside down.

In late 2011 I started complaining to my family doctor that I was have crazy memory issues, each and every time he blew me off and stated it was stress or something like that. So, I feel like precious time was wasted. As of December 2013  I am now with a very caring proactive neurologist.  

Here is a issue I am facing now, My husband and I have been married 25 years we have 3 adult children. My children are very supportive and understanding. yet my husband is having a very hard time with my dx. He doesn't want me to tell anyone about this. I think for some reason he is embarrassed. I ask him for a service dog and he starts talking about being held back in life. Let me explain we have always looked forward to retirement and having freedom to travel and go as we please. Now I am feeling like I'm holding him back... It is very painful. Maybe that is not what he wanted to say but, it is what he said. All I'm asking for is love and understanding. There is no reason why we can not continue with our dreams.

Please understand he is a wonderful man I just need to know how to communicate with him, how to explain my fears and what's going on in my brain. I think it's falling into the category of being an INVISABLE disease.

Please DO NOT respond if you are going to bash my husband that is not what I am looking for. I am asking for help with dialogue, something I can say to help him understand.

Thank you,



Posted: Thursday, March 27, 2014 1:34 PM
Joined: 9/12/2013
Posts: 3608

It takes some time for this to sink in, and you are both facing loss of dreams.

My counselor helped me by saying "we all face change at different rates of speed. You want him to accept it all NOW."

I gave my husband the book LEARNING TO SPEAK ALZHEIMER'S and that changed a lot.

 Valuable to learn how the environment you live in will make things better or worse more than anything else.

 Some of us had to accept that many people we thought we could count on just are not up to the journey. Also so much info online I overdid that for awhile.

 These boards have knowledgeable and kind people that will give you sound advice from their perspective.


I am in year 4 or 5 of EOAD, have had diagnosis since summer 2013. Told my problems were anxiety / depression. A website blog called Alzheimer's reading Room describes a path a son takes with his mother, full of what you are hoping for. I pray you have many years of a good life. A peaceful place to live with people willing to learn how to approach a person with brain issues, the energy of those around you, and in your own heart are paramount. Plus the exercise and other standard advice - it all helps.


Come back, stand firm, the shock waves still continue for me.

Love to you, your husband and children.

Posted: Thursday, March 27, 2014 3:28 PM
Joined: 11/29/2011
Posts: 521

Simply Kristina,


Thank you for sharing and you have found a wonderful site full of supportive members.


I do not have alz. my mother does so I am unable to relate in the way that you need but I do want to let you know that my thought is...He is just as afraid as you are and thus in denial. 


Please continue to post and there are a couple of woman in the chatroom at around 9PM EST that are married to gentlemen that have alz.  They would be able to express some of the feeling that they had and help you to understand your husbands reaction a little more, maybe.


Hugs to you and this board can be so helpful to you and more will post for you. 


Just wanted to welcome you,



Posted: Thursday, March 27, 2014 4:20 PM
Joined: 12/6/2011
Posts: 3326

Welcome, Kristina. It's wonderful that you have joined us. I hope to hear more from you. 


Please consider asking your husband to join you in going to counseling to discuss the issue. It would be great if you can find one who has experience with patients going through what you and your husband are going through. 


Please call the Alzheimer's Association chapter nearest to where you live to see if they have a list of counselors from which you can choose. Click on this link to find the chapter nearest to you: 

Simply Kristina
Posted: Thursday, March 27, 2014 6:03 PM
Joined: 3/22/2014
Posts: 8

Thank you ALZ+,

Very  very wise words. I guess I have expected him to jump right on board. You are right there is overload on the web.  I just started looking and what I called doing my 'homework'. The "homework" has turned into fear. So, I must stop.

Thank you again....

Simply Kristina
Posted: Thursday, March 27, 2014 6:06 PM
Joined: 3/22/2014
Posts: 8


Thank you so much. I am sure you are right. fear = denial. I was stuck in my bubble and thinking about that in his case.

Thank you again and I will check back later in the evening.

Simply Kristina
Posted: Thursday, March 27, 2014 6:09 PM
Joined: 3/22/2014
Posts: 8


I will follow through with this. Thank you for the link. Thank you for taking time to read and respond.

Posted: Monday, March 31, 2014 8:05 AM
Joined: 10/1/2012
Posts: 15

Glad you found this message board.

Some of the conversations, especially if there is true honesty can hurt.....thank him for being so honest with you, sure you are feeling the some in some way. I thought about the things that would be lost, dreams, goals, etc. It is mourning, denial, anger, sadness etc. but we are all still here makes it more confusing.

Learn to live well...there is a lot of info, positive, especially one the site for caregivers and those of us with the diagnosis. Check out 'living with Alzheimer's' section it is great

Mimi S.
Posted: Monday, March 31, 2014 10:11 AM
Joined: 11/29/2011
Posts: 7027

Hi Kris,


Welcome to our world.


One day at a time is the mantra for both of you.


I do want to echo what Myriam wrote. The reason she suggested getting a name or names from your local chapter is that you need someone to guide the discussion between you who knows the score.


Another great book for both of you is: Living Your Best with Early-Stage Alzheimer's by Lisa Snyder of the Shiley-Marcos Disease Research Center.

Several of us who have been on the boards for years think our success in delaying the progression of the disease is our avid participation in the Best Practices:

1. Take meds as directed. I also take Omega 3 and antioxidants.

2. Strenuous physical exercise. The point is to get your heart beating at a higher than normal rate for a while. Research has shown that vigorous exercise build new brain cells

3. Strenuous mental exercise. A variety is best. You want to get your brain working. Example, if you do the Sunday times crossword puzzle in ink, get something else.

4. Mediterranean diet. Search the net. If this is a big change, gradual is the way to go.

5. Socialization. Maintain or increase. No couch potatoes.

To tell or not. Could be some kind of a compromise is in order.
 I am one who was so tired of family secrets that I went public immediately. Some people feel they lost some 'friends."  My feeling is they weren't friends. I was retired, so my disclosure did not effect my job. If you want to get long term insurance, since you've been diagnosed it's too late anyway.

The advantage for me is that my friends understand when I search for a word and it escapes me. Most of them are very good at judging just when to rescue me with the correct word. 

I met the people in my local chapter and have been very active there.

Letting folks see that even though you are very young, you have been do diagnosed, encourages others (and hopefully also the medical profession) to recognize their lapses as a need to get tested.

Paul Hornback
Posted: Monday, March 31, 2014 5:40 PM
Joined: 8/9/2013
Posts: 584

Kristina, I understand your situation. It took my wife well over a year to face my diagnosis with a firm and hopeful outlook. Initially all she wanted to do was deny it and cry. She is a wonderful woman and it struck her pretty hard since we were both approaching retirement in about 5 years. I had to retire early and she continued working. After finally accepting what was going on, she has been an extremely valuable partner in my fight against the disease. She helped through an 18 month clinical trial for a new drug, she has encouraged me to write about my experiences, she goes to memory cafes with me, and she has agreed to serve on an early stage advisory board with me if I'm selected.

I guess I'm saying that it just takes time for some people to process all that happens after a diagnosis. Give your husband time and I'm sure he'll get his mind wrapped around it and he'll be your best supporter! We also had three adult children and she had to deal with their frustrations as well. Just give him time and stay hopeful throughout your dealing with him and this disease. There are still plenty of great times ahead of you as I've been diagnosed for over 4 years now (Nov 2009).

God Bless, Paul

Posted: Tuesday, April 1, 2014 10:54 AM
Joined: 9/12/2013
Posts: 3608

Men fix things. Dementia can't be fixed...well, it can be helped. Give him a book, my favorite is LEARNING TO SPEAK /ALZHEIMER'S as it is to the point and compassionate and hopeful and helped everyone who has read it in my life.

My counselor made me realize just because I have this diagnosis does not let me off the hook. I wanted to be off the hook BIG TIME, I wanted my husband to just get going and...who knows what!

So when I can, I tell him what would help me. Men respond to that (so do women so why the man thing I don't know but because counselor said that I eased up on husband ) .

At first I did a dooms day prepping, bought "supplies" for the tragedy about to unfold and so on. I panicked over "WHO WILL GET ME DONUTS WHEN I CAN NOT DRIVE?!"

I remember reading on boards about a wife whose husband wanted to use his chain saw! So I absorb what I can and have made a secret booklet for when I can't:

 dress myself - what I like to wear

 use toilet - well, you can imagine

 bathing me - no cold water, go slow, like the shower seat

 favorite shampoo, favorite toothpaste, got memory foam mattress, good sheets, natural wound healing agents! I have a box of incontinence stuff, oh it was intense. Counselor helped me relax and things are progressing, could not remember what a can opener looks like last night but remember that I forgot it.

 We use natural stuff. I selected strains of medical marijuana and wrote all this down in case he dies or leaves me I will have my book of what will make me more likable. Tremendous fear of being abandoned is common.

 I eventually realized we are all going to die, most of us are surprised when we get some diagnosis that says we will die for sure. But I still don't know Alz will kill me - I could choke first or a deer could take me out while woods walking. Do what you can to give yourself peace of mind, ask him to help with those things. Appreciate him, being able to hold him, to be held, to snuggle, to cry with. Make him important. Give him time. I tell my husband I am scared and want to smell his neck! He loves that.

 Right now I am working on BUT HE IS NOT PERFECT YET! He is worried about losing the woman he has fun with, to do things with - you probably have years of that left. The diagnosis can bring you a lot of happiness. It can be a spiritual journey. You have to find your own way, make your home safe and comfortable and pleasing.

 Love to all!

Simply Kristina
Posted: Friday, April 4, 2014 12:54 PM
Joined: 3/22/2014
Posts: 8

Oh my goodness all of your words have helped so much.

The good news is my husband has opened the dialog on his own. We have slowly been discussing what to do if, when or whatever. It has been harder for ME than I thought.... the legal paper work actually threw me for a loop. My husband took my by the hand and said This is not a death sentence, we will get through this. He checks on me often through out the day and writes little notes for me. So, I think it's going to be okay. Not easy but, okay.   

Posted: Friday, April 4, 2014 1:30 PM
Joined: 10/13/2013
Posts: 1

Simply Kristina, thank you for your post. I usually just read and move on but, your parting words caught me: "It's going to be okay. Not easy, but okay." I can accept that too.
Iris L.
Posted: Sunday, April 6, 2014 12:58 PM
Joined: 12/15/2011
Posts: 18692

A belated welcome to our online support group, Kristina.  I'm sorry for your diagnosis.  Receiving this type of diagnosis is probably one of the worst things a person or couple can hear.  All our dreams become smashed in one moment on hearing the words "dementia" or "Alzheimer's". 

But there is hope.  All is not lost.  Yes, your life will change, but it doesn't have to be devastated.  The best thing to do is to reach out to the members here for support.  We support each other. 

Post as often as necessary.  We will all help you.

You can still travel.  I just came back from a two week tour of the Holy Lands.  I was a solo traveler but I went with a group.  I prayed about being so far away from home on my own.  I did pretty well.  I had read the travel tips from our patient members and from the caregiver members, and incorporated many of them in my own plans. 

Many of us have traveled, even overseas.  It is possible and enjoyable.  The main this is to get yourself stabilized by following Best Practices.  Make your financial and legal preparations, then go for it!  Enjoy your life!  We are not promised tomorrow!

Iris L.

Posted: Monday, April 7, 2014 1:23 PM
Joined: 4/7/2014
Posts: 10

Hello Kris!

you have found one of the best sites in America for people in your situation.I sorry about your diagnosis. But I have lived with it since 2008 and.... here I am! It is an interesting ride, there are low points which causes hardships for your loved ones. Can't say anything about the high points!

My wife is about my only friend now, so it it is good to hear you defend your husband. 

Good luck on your journey!


Mimi S.
Posted: Monday, April 7, 2014 3:25 PM
Joined: 11/29/2011
Posts: 7027

Hi Ttommy, 

Welcome back. To me it is truly amazing that there are so many of us old-timers still hanging around. This in spite of all the 'experts' claim on the impossibility of being in Early Stage that long.

Iris L.
Posted: Monday, April 7, 2014 6:44 PM
Joined: 12/15/2011
Posts: 18692

Are you Ttom?  Great to see you back!  I miss your posts and your Serenity Prayer.

Iris L.

Posted: Monday, April 7, 2014 10:28 PM
Joined: 9/12/2013
Posts: 3608

Iris back to your trip, could you sleep while away? did you have anxiety in hotel rooms?



Iris L.
Posted: Tuesday, April 8, 2014 12:46 AM
Joined: 12/15/2011
Posts: 18692

Alz+, I slept well while away.  The tour kept us on the go--wake-up calls were at 6 am, but I set my alarm for 5:30.  We were on the go all day.  I had no anxiety in the hotel room or anywhere--except when searching for my lost itinerary.   


Actually, I did better 8,000 miles away from home than at home--no stress, no responsibilities other than getting on the bus in the morning and staying with the group. 

Iris L. 

Jo C.
Posted: Tuesday, April 8, 2014 9:21 AM
Joined: 12/9/2011
Posts: 13681

Ttom . . . so good to hear from you once again, how are you and your dear wife?



Posted: Tuesday, April 8, 2014 10:15 AM
Joined: 4/7/2014
Posts: 10

Well.... it is a pleasure to return. Been thru a pile of experiences, not all pleasant! Hope to remain on a level playing field for a while.
Jo C.
Posted: Wednesday, April 9, 2014 7:58 AM
Joined: 12/9/2011
Posts: 13681

TheoT; it is so good to welcome back our old friend, Ttom. 


I am sorry you have had a difficult time, but I am also glad you are doing much better now.  That is a good thing.


Can you do a couple of things for us?


1.     Can you go to the top of the page and click on the box that says, "Add Post."  


That way, you can start a page of all your own and many more of your old friends will find you.


If that is difficult, perhaps someone can help you to do this.



2.     Can you tell us a little bit about yourself and what it is like for you right now.


All your old friends are just so glad to hear from you and we sure do want to catch up.


A few of us old Peer Volunteers are still here, and as you will see, we have some new Peer Volunteers too.


I send you a big old hug and happy wishes.


I also send a great big THANK YOU for coming to talk to us.


Your Peer Volunteer friend,



Posted: Thursday, April 10, 2014 8:05 PM
Joined: 12/6/2011
Posts: 3326

TheoT!  Yaeeee, so good to have you back. Missed you so much.
Posted: Friday, April 11, 2014 8:21 AM
Joined: 11/29/2011
Posts: 514

Ttom, so wonderful to hear from you after such a long absence.  I hope you and your wife are doing well and coping with one day at a time.  I agree, start a new post for yourself.
Posted: Monday, April 14, 2014 7:01 AM
Joined: 1/12/2012
Posts: 1432



I may have mentioned this to you on another post.  I am usually on the Spouse /Caregiver board but I check here occasionally as my husband Dan was dx'd at age 56.


There is a wonderful speaker named Teepa Snow.  She has a website ( and multiple youtube videos.  She has great insight into this disease and many, many helpful and informative suggestions along with a lot of information on the how & why of this disease. 


If you go to her website and click the drop down menu to choose " who are you" , I think you will find some links to watch videos that might help you and your husband. 


It sounds like you & your husband have a wonderful relationship, I know you are struggling with his acceptance.  I'm sure you & he will find a way to communicate and resolve this very soon.