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I can't even ...
Posted: Thursday, August 22, 2019 5:08 PM
Joined: 8/13/2019
Posts: 7

As I was leaving the grocery store this afternoon I got a call on my phone from Mom. When I picked up she asked what time I was going to be home today.

She's in Kansas City, I'm in Austin. I left from a short visit two weeks ago.

Did she think I was still there? Was she confusing me with Dad? (She used to ask him that before he retired, when he often worked late.) Did she think for a moment I was still living at home, even though I've never lived with them in Kansas City?

Friends, I can't even deal with this. I got home and broke down crying on the boyfriend's arm until I made my stomach sick. I know so many of you have been through so much worse for so much longer. I heard the final diagnosis less than a month ago. The family has like three thousand things to figure out now and I feel like I can't even deal with it at this stage.
This is so f---ing unfair. I need more time. I know I can't have it.
Terri H.
Posted: Thursday, August 22, 2019 5:36 PM
Joined: 6/4/2019
Posts: 13

John - I totally get your feelings and grief. This disease sucks! My mom, diagnosed just yesterday, is already in stage 6 and has gone from 0 to stage 6 in a matter of six months. It is hard to see and accept and your feelings are normal, as everyone else on this board keeps telling me. It's not going to get easier - I think we just develop different layers of acceptance. Each setback causes new anxiety, both for our loved ones and us. I have no answers as I'm navigating myself. And I say again, it sucks! But here is a safe place to air your feelings. My husband doesn't quite understand. My kids don't understand. My brother doesn't understand. But here, everyone understands!  Hang in there...
Posted: Thursday, August 22, 2019 7:03 PM
Joined: 10/24/2018
Posts: 1185

To have to get used to this in such a short time, and for you John in such a young mother (I'm her age), must be horrible. I can't begin to imagine what you and Terri are feeling. 

Do you look like your dad did 15-25 years ago? That could be it perhaps. Maybe if she asks again, you could tell her you had to leave town on a trip, and would be home as soon as you get all the office/sales/whatever work out of the way? 

Sounds like you have a very supportive SO, and also that your family might be one to pull together. Keep breathing, deep breaths.....

Greg G
Posted: Thursday, August 22, 2019 7:58 PM
Joined: 2/8/2017
Posts: 986

Hey John,

Yes this is extremely hard to deal with.  I suggest washable handkerchiefs because you are going to cry lots of tears.  We all have.  No need to make tissue makers richer.

It looks like you joined here this month.  Had you been reading/lurking here before actually joining?  That is what I did.  Read a lot before actually joining.

The best thing you can do is to educate yourself about what mom has and how most people deal with it.  Books, videos and lots of stuff here.  The more you can know (within reason, no need to get your doctorate in cell biology) the slightly easier it will be.  The wheels have been invented many times here.  No need for you to invent one.  Although you can slightly modify one and then let the rest of us know.  That is how most of us have managed.

Good luck and best wishes, Greg

Posted: Friday, August 23, 2019 8:23 AM
Joined: 8/22/2019
Posts: 34


I just joined yesterday and find it comforting to read other peoples stories and how many people are going through the same thing. If caught me off guard about 6 months ago when I picked Mom up at the care home to take her for a drive and she asked if Dad knew we were out and we should let him know what time we will be home! My Dad passed away 3 years ago! I have learned you don't try to correct them or understand their logic, you just lie or agree with them. I said yes he knows, I let him know. That is all she needed to know for her own peace of mind. The hospice nurse said dementia is like a seesaw where they will go back and forth with episodes like this. My Mom is 89 and has had dementia since 2017. After Dad passed she got worse and could no longer live in her home, so I had to put her in a care home last September close to me. She has 24 hour care with 4 other residents. She gets wonderful care and I'm able to go visit her. Last Saturday we sat out in the beautiful backyard and she did no know my name or hers! I felt the tears rolling down face. She has no emotion and sleeps often. One person said live in the moment with no expectations. It's not moms job to remember me or love me anymore. Her brain is dying, she can't. I have to come to terms with this when I go visit her because it will only get worse. She also has cancer. It is killing me to see her like this. I'm trying to learn ways to cope because it will only get worse. Sallie

Posted: Friday, August 23, 2019 11:21 AM
Joined: 8/14/2019
Posts: 20

John, I'm sorry you are going through this. This is a hard thing to deal with, especially with your mother at such a young age. 

It is good to hear that you have a partner that you can lean on through this. His support will make this slightly more bearable, even though it is absolutely overwhelming. 

You are not alone. This community of people understands. 

Hang in there.

Posted: Friday, August 23, 2019 1:51 PM
Joined: 4/7/2019
Posts: 125

 I heard the final diagnosis less than a month ago. The family has like three thousand things to figure out now and I feel like I can't even deal with it at this stage.

John, I know how you feel.  This is how I felt when my sister was first diagnosed. Take a couple of days off if you can. I know for me, I needed the time to just process and wrap my head around how that diagnosis was going to affect her, me, and our family.  It's overwhelming.

So many questions, so many things to do, all of us kind of freaked out back then.  Then we all calmed down,  and started tackling it all bit by bit, all the while doing our best not to upset my sister.

I won't lie, the last year has been one of the hardest of my life.  I don't know what you like to do to relax, but make sure you take some time to do some of those things.