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How to help my parents cope with the diagnosis
Posted: Thursday, August 22, 2019 6:15 PM
Joined: 4/6/2018
Posts: 7

My brother, sister and I are going to accompany my parents to an appointment where my mother will be told that she has Alzheimer's.  My father got a call from the neurologist earlier this week with the diagnosis but has not been able to break the news to my mom.  So he has chosen to let the doctor share the news.  

My mom used to be a caregiver for people with Alzheimer's so she is well aware of what this diagnosis will mean.  She has had escalating symptoms for about five years and is aware that something is wrong but believes that she will get better.  She says this over and over:  "I just want to get back to being myself.  I just want to get better."  

After tomorrow, she will know that she is never going to get better.  I am heartbroken for all of us but most of all her and my dad.  What can we do to support them through this terrible realization?  

Posted: Thursday, August 22, 2019 6:17 PM
Joined: 9/3/2016
Posts: 215

Most likely deep down your mom knows. All you can do is be there for your parents, continually assure them of your love and support. Assure your mom that even if someday she no longer knows you, you will always know her and you will always love her and take care of her.
Posted: Thursday, August 22, 2019 6:54 PM
Joined: 10/24/2018
Posts: 1183

Pam, I second what No Sibs said. Maybe there is a quiet walk in the park to be had after the bomb drops.
Greg G
Posted: Thursday, August 22, 2019 8:04 PM
Joined: 2/8/2017
Posts: 986

Hey pamdemonium,

I agree with NoSiblings & zauberflote.  No dramatics on the part of dad or the kids.  Just kind of mattarfactly.  A quite walk would be good.  Bring tissues for all.  A bunch.

Reiterate to mom that you are all in this together and we will figure it out as a family.  Love is all around her and will always be.  (Don't make promises that you may not be able to keep.)

The road forward is difficult.  Keep coming back here.

Good luck and best wishes, Greg

Posted: Thursday, August 22, 2019 8:13 PM
Joined: 9/7/2017
Posts: 797

I would keep the emphasis on the diagnosis light - you have some memory problems, mom, technically it's alzheimers, but who knows what the future holds. We love you and we will be there with you no matter what.  If you feel like she needs to hear this from a doctor, that's fine, although I find doctors' skill in delivering this type of diagnosis is .... inconsistent. 

Will she know she will never get better? She may for a short period of time. My MIL still thinks she is going to get better - the diagnosis, she doesn't even remember it.  She asked over and over again - and then stopped asking. 

Think ahead what you're going to do in the future when she asks you what's wrong with her, because she most likely will.  If you feel it's necessary, I would consider the diagnosis convo a responsibility fulfilled.  And from then on, "you've got some memory problems, sure, but we've all got a little something, don't we?  We're here for you mom, you have nothing to worry about." "Is it alzheimer's (if she brings it up)? Yeah, but who knows what the future holds? You seem to be doing pretty good to me - and you've got us to fill in the blanks when you need it." 

Less emphasis on informing/information and more on comfort/assurance. 

Posted: Friday, August 23, 2019 4:26 AM
Joined: 3/6/2017
Posts: 2259

Good luck to you today.

IME with my dad who was diagnosed fairly well into the disease process, the big reveal didn't really register. It rocked my mom's world and mine, as well. But for dad? Not so much. 

Dad was initially diagnosed while in the hospital after being admitted through the ER during a psychotic episode. It was almost 3 years ago; as luck would have it, it was my parents' 60th anniversary. The attending neurologist and his flock of residents and med students swept into the room while my mom and I were visiting. The neurologist addressed us saying that he had reviewed the tests he'd ordered and felt dad had garden variety early stage late onset Alzheimer's adding that people with Alzheimer's can live 10, 15 and even 20 years. Dad's face brightened, he looked at my mother and said "Doc says I am going to live another 15 or 20 years". He didn't see the bigger picture.

In the early days, he recognized that he had trouble remembering some things, but did not recognize when he conflated memories which were inaccurate on some level. He often woke up from a nap to report that something he knew he'd forgotten came back to him in his sleep and he'd offer up some random old address or phone number as proof he was getting better. He believed he was going to get better and I certainly wasn't going to quash that hope- in fact I often leveraged that belief when I needed to get him to cooperate around seeing his geripsychiatrist for medication under the guise of making sure we were doing all we could so he could get better. 

The bigger piece here is for you to be available for your dad- to make sure he takes care of himself and gets regular respite so that he doesn't become isolated.
Posted: Friday, August 23, 2019 5:56 AM
Joined: 5/22/2019
Posts: 41

I don't see the need to tell her.  She's living on hope that she will get better, why destroy her hope.  Why tell here she will never get better which will destroy her spirit.
Posted: Friday, August 23, 2019 9:00 AM
Joined: 4/6/2018
Posts: 7

Thank you to all of you who took the time to respond.  I am so grateful that my brother and sister will both be there.  Having all three kids in one place always brightens my mom's day.  I have put many packs of tissues in my purse.  I love the idea of taking a walk afterwards.  I will have to see what she and my dad are up for after the appointment.  Thanks again.
Posted: Saturday, August 24, 2019 12:10 AM
Joined: 6/12/2016
Posts: 1048

Dear Pam, 

I was thinking about you and your family. I hope the appointment went as well as possible. I hope your Mom is okay. I just wanted you to know you are being thought of.  Please let us know how it went.