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what happens after a diagnosis?
Posted: Friday, April 17, 2015 6:35 AM
Joined: 9/12/2013
Posts: 3608

Emotions you may have

You noticed symptoms. You made a doctor's appointment. You took tests. And you felt a roller coaster of emotions — fear, hope, despair, denial. Then you received a diagnosis. You may have felt numb, unsure of how to respond or where to turn.

"There was a sense of relief that I was able to name what was going on, but also it was a shock because I wasn’t expecting that my entire life was going to change within a few moments."
Lou B., person living with Alzheimer’s

You also may be grieving over the present losses you are experiencing, or the expectation of future changes as the disease progresses. It can be helpful to identify and understand some of the emotions you may experience after receiving your diagnosis.

These emotions may include:

  • Anger. Your life is taking a different course than the one you and your family had planned. You cannot control the course of the disease.

  • Relief. The changes you were experiencing were cause for concern. A diagnosis validated these concerns by assigning a name to your symptoms.

  • Denial. The diagnosis seems impossible to believe. You may feel overwhelmed by how your life will change as a result of Alzheimer's.

  • Depression. You may feel sad or hopeless about the way your life is changing.

  • Resentment. You may be asking yourself what you did to deserve your diagnosis or why this is happening to you and not someone else.

  • Fear. You may be fearful of the future and how your family will be affected.

  • Isolation. You may feel as if no one understands what you're going through or lose interest in maintaining relationships with others.

  • Sense of loss. It may be difficult to accept changes in your abilities.

If these feelings linger week after week, you may be dealing with depression or anxiety. Feeling depressed or anxious about your diagnosis is common, but both can be successfully treated.


Reading this over again, I remember the shock, numbness, grieving. I still find it very helpful to remind myself every day I am still and always at the beginning of the rest of this journey.

More good information through link. Wishing all of you recently diagnosed lots of Love and Courage.

Lisa Ramey
Posted: Friday, April 17, 2015 3:55 PM
Joined: 6/20/2014
Posts: 160

Alz+ great post, I seem to continue a journey through each emotion and it's almost been a year.
Paul Hornback
Posted: Friday, April 17, 2015 4:47 PM
Joined: 8/9/2013
Posts: 584

alz+, I've been through all these emotions after my diagnosis. Now I just focus on living my life the best I can. I'm content and have found things to do that give my life purpose. I stay positive and meet whatever challenges arise head on.

I've still got lots of life left and I'm going to do all I can. Thanks for posting this as some people may not realize they are going through these things.

God bless, Paul

Iris L.
Posted: Saturday, April 18, 2015 1:35 AM
Joined: 12/15/2011
Posts: 18692

alz+ wrote:

If these feelings linger week after week, you may be dealing with depression or anxiety. Feeling depressed or anxious about your diagnosis is common, but both can be successfully treated.


Question: How will these be successfully treated, when patients with dementia are not eligible for mental health services?

My psychologist from the senior mental health service told me so.

I have given up expecting anything constructive from professionals. I rely solely on the message board and the chat room members for my mental health.

Iris L.

Mimi S.
Posted: Saturday, April 18, 2015 8:15 AM
Joined: 11/29/2011
Posts: 7027

Iris, I have not heard that. I wonder if it's a state by state policy.

That being said, for those of us with dementia, we need a therapist who has been trained in the effect of dementia upon metal health, so that those facts are taken into consideration.

There have been several folks on our boards who regularly see a therapist to deal with the emotions that many of us experience dealing with our disease.

Posted: Saturday, April 18, 2015 2:32 PM
Joined: 4/17/2015
Posts: 4

For me, what happened after a diagnosis was nothing. I reached out to the alz. organization to find there were no support groups, no peers to meet and socialize with... nothing. I am on this journey alone. I have accepted my situation but with no peer involvement, it is lonely.

I spent 4 months in RI and that chapter has social engagement groups 3 days a week. Why, because it is the chapters priority. In Fl there are so many people with the disease, let too little is done for us.

Sure, a lot is done for the caregivers, everywhere I look. But....

Iris L.
Posted: Saturday, April 18, 2015 2:42 PM
Joined: 12/15/2011
Posts: 18692

Welcome to our online support group, sophia. It is great that you have found us. Here you will find the companionship you seek. It's not the same as having a live companion, but it is a very close second. ALL of my own support comes from this board.

You may be on to something there. All chapters should have resources for patients. I tried to get a group going for patients at a local hospital. The nurse, who was in charge of community outreach, looked at me as if I had two heads. She did not believe that patients needed a support group. In my locality, there are many great reasources for caregivers.

Dementia must be the most isolating disease there is. No only is it isolating, but people don't even realize that it is isolating. At the same time, I would rather be isolated in the community, and rely on my fellow cyber-members here, than deal with professionals who are negative or giving me bad information or suggesting that I give up.

Please keep posting. Can you tell us more about yourself? Are you on medication? You can begin your own thread by clicking on the green tab "Add Topic"on the main Younger Onset board. Then more members can greet you.

Iris L.

Posted: Saturday, April 18, 2015 5:47 PM
Joined: 9/12/2013
Posts: 3608

Sophia - your post was very clear about the big zero most people find as "resources" after a diagnosis.

Every thought and idea you have about this situation that is posted here (or elsewhere) helps others. I just went to my first meet up group, diagnosed 2 years ago or when ever! ha!

I think we have to start our own support at this time, but if we do, no matter how small a seed planted, it will grow and improve for the many others to come. A note at the local grocery store or notice in local newspaper for people interested. My fear was too many people would be calling me, it would be over whelming for me.

Better to try and possibly make some new friends, ship mates and see what happens than for me to be loving my rural area but miss out on the companionship.