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"How sudden..." Ugh.....
Waiting for a cure
Posted: Saturday, February 11, 2012 1:39 AM
Joined: 12/15/2011
Posts: 295

My mom's alzheimers decline has been rapid.  Call it devastating, call it merciful (that she didn't suffer long, not that she got the disease of course), I don't know.  Three years ago today, she was still driving.  Now, I'm planning her memorial service.  

In the process of notifying people about her death, I've been very blessed by outpouring of love and support.  My heart has been ministered to by my friends, and by a  few of my mom's friends as well.  

I'm just venting here a little.  A year ago, my mom didn't yet suffer from incontinence.  She was forgetful, said odd things sometimes,had no sense of direction, couldn't read time, called me at 4am often because she thought it was the afternoon, didn't feel hunger anymore and had to be told when it was time to eat, needed help dressing, bathing, and being administered her meds.  She was still going on outings with my boys and I, still attending church and Sunday school, family dinners, holiday events, shopping, etc.  Within the last year, everything came crashing down.  By the time my mom passed away on 1/30, she had been through a LOT.  

It's understandable that people who haven't seen her for quite a while would feel that this is so sudden.  They are right.  Mom went fast.  But by the time it happened, it was no surprise. She was wheelchair bound from aug, bed bound from after christmas, didn't feed herself, wore pull ups, and was beyond too thin.   So when I respond to the "how sudden" lamentations, I'm not surprised or shocked at all.   And I'm either coming across cold or already in tears for the truth of it.

Argh.  Once in a while I feel like saying "If you'd come around to visit your friend, you'd know." Believe it or not, I'm not usually judgmental of people's choice not to visit much.  We all have our complicated lives and we do what we can handle. 

Anyway, thanks for letting me rant.


love lost
Posted: Saturday, February 11, 2012 9:49 PM
Joined: 12/4/2011
Posts: 28

           Sending my condolences for your loss.  I do understand your anger/frustration.  Why is it that someone with cancer still has visitors; yet, our AD loved ones seem to be forgotten.  Not sure why but I believe it is due to our country's lack of information and research.

      Please know that I will keep you in my prayers.   My husband passed in less than six months. On July 4th, he drove to our son's home 40 miles away and died on December 17, 2011.

      God Bless You and hope you can take care of yourself some.

Beth in Indiana
Posted: Monday, February 13, 2012 8:40 AM
Joined: 12/21/2011
Posts: 95

Hi - my condolences on your loss.  I know it feels anything but sudden to you when you've lived through it.  It sounds like maybe you're working through the grief and this is one part of it.  Some anger.  Pretty healthy actually.  People sometimes just don't have a clue until they've walked a mile in your shoes, or bothered to come visit.  And even still, I wouldn't wish this disease on any of them. 


I hope you'll take extra special care of yourself in the coming days/months.


Waiting for a cure
Posted: Monday, February 13, 2012 7:08 PM
Joined: 12/15/2011
Posts: 295

love lost, Beth, thank you for understanding and replying. You've both been through a lot of pain and grief lately.  How are you doing?  Are you keeping to yourself, or getting out in the world?   Do you have understanding friends or do people expect you to return to "normal life? ?

I know that this part of the board for those who have lost someone is less active than the caregiver board, and I appreciate your company.  (hugs)  I feel I'm in the company of friends.  

Beth in Indiana
Posted: Tuesday, February 14, 2012 7:47 AM
Joined: 12/21/2011
Posts: 95

Well, you're a sweetie for asking.  I'm actually trying counseling to avoid what I feel is the evidental bomb coming my way. Or if I can't avoid it, somehow channel it into something positive and NOT fall apart at work.   I'm looking for more tools to help me adjust to a new life.  My daughter is also a newly admitted college student and will be gone in 6 months.  So Empty Nester stuff as well.


I do have caring friends and family.  But honestly, they've heard it for 8 years and there are things I need to say, face, move through that frankly I think is too much for a friend or family to hear.   So we'll see how this goes.  I didn't much care for the first session when she was just gathering background info.  That's probably my desire to just move forward poking through.


And I am out and about.  I was off a week for the funeral and paperwork and then back to work.  Which was good. A bit lost but gaining ground.   And that's probably WAY more than you wanted to hear   Anyway, what are you doing for support?  I'd be glad to hear your story as well.


Thanks for asking!

Waiting for a cure
Posted: Thursday, February 16, 2012 10:07 PM
Joined: 12/15/2011
Posts: 295

Thank you, Beth.  You've got a really healthy grasp on the grieving and healing process that I hope I can find.  I hope you find counseling more helpful beyond the initial info-collecting and getting to know meetings.

I relate to what you've said about the friends have heard it for years and about things that would be too much for a friend or family to hear.  I'm not much there yet, still planning the memorial.  One day last week I was really angry with myself all day for not having cared for my mom at home through to the end.  I know there were good reasons then why I didn't and couldn't have.  But those didn't matter, I was angry anyhow.   Other days have been better.  

What I do find uncomfortable, though probably normal, is that....I'm barely present for the experience.  When I do feel emotional, it's mostly a crack in my composure caused by a kind sentiment from a friend on an already emotional day.  Otherwise, I feel i'm going through the motions in a fog, not really feeling anything during the process except constant stress and frustration.  I do miss my mom so much.  In my sleep, my dreams deal with being the only one left in my family, about having neither parent (my mom was my only parent for most of my life, she was an only child, and her parents family members are gone or incommunicado for more than four decades)

I.  I hope the actual memorial doesn't feel this way.  I want to remember it.  I think if that happened, later on, I'd regret not being "present" in the moment. Once the memorial is over, I think I'll want to rely on it for a piece of the grieving process, but I don't know if it will serve as that if I'm in a real fog the whole time.  i suppose it will be what it will be


I don't know if that's an answer to your question, Beth.  Anyway, thank you for inviting my reply.  It felt good to say the stuff on my mind.


Posted: Thursday, February 16, 2012 10:49 PM
Joined: 2/6/2012
Posts: 48

Dear one, that fog you are in can be normal. When Dad died it was such a shock, but there were things to be done and I was the only one emotionally able to do it. So I pushed my grief down and got to work. The fog, the lack of emotion, made me wonder if something was wrong with me...why didn't I feel worse, was I that shallow? But things had to be done...It was over a month later that I finally broke down in what I consider true grief. And it was a real doozy...had to pull the car off the road, sat and wailed and yelled and pretty much went to pieces.


 So if you are the one still shouldering the responsibility of taking care of business...your brain is helping you to cope by shrouding you in that fog. It will lift when the time is right, and you will feel oh so much, you will feel. Counseling is good, when you are ready. Until then, get done what needs to be done, then the healing can start. ((((hugs))))


Beth in Indiana
Posted: Friday, February 17, 2012 7:35 AM
Joined: 12/21/2011
Posts: 95

LeeH's response is pretty much right on for me.  I was in 'get it done' mode.  The one-foot in front of the other- mode and still taking care of others, being the host.  I do think it's a protective response too.  But at some point, we have to have time to just think through (maybe verbalize) what's happened.  At least I do.  I don't think I can have a plan if I don't sit with the feelings first.  This has changed our lifes forever and that has to be acknowledged on some level.   


So I believe as LeeH does, the emotions will come for you and certainly the anger is part of it too.  My counselor did give me the name of an author to investigate.  Alan D. Wolfelt.  At first I thought, 'when I get a minute, maybe'.  Then I saw a quote from him in a Hospice flyer I just recieved.  Check this out -


"Reflections on Healing


The reality of this death demands my attention.  As I move from head understanding to heart understanding, I feel with burning certainty that life is forever changed.  I arrive at this new place unprepared for the journey ahead. 

Yet, I must set forth into unknown territory. 


While embracing the reality of this death is painful in ways beyond words, the more I open myself to allowing doses of reality in, the more I open my heart to healing."



All I can say, is that's exactly where I am.

Let's keep talking.


Thinking of you -



Posted: Sunday, February 19, 2012 5:22 PM
Joined: 12/20/2011
Posts: 84

I think we all grieve differently and at our own pace. My mom passed away on February 1st and I am still processing it and trying to feel my way. I have good days and bad...or maybe I should say good moments and bad ones.


I am the responsible party for everything pertaining to her and my dad with AD. My dad had a tough reaction to her death and we were engrossed in taking care of him for the first two days (it literally felt like she had been gone a month by day two because so much had happened). Then I had to start notifications (to officials, family and friends), write the obituary, complete cremation arrangements (though they were fully paid for and arranged, I still had to sign a bunch of papers...?), and on and on. And now there are more issues and problems with things...I have adopted the mind set that I can only take it one thing at a time and I am doing my best.


I too have not had a big grief cry, but I have had moments and reflections (like right now as I write this with tears in my eyes). Something I have been working on is remembering my mom pre-AD. I don't want the first image of her to be on her death bed or in the last two years of her life after the AD diagnosis. I want the first image of her to be before all this journey the mom I grew up with. I don't want to forget the last two years at all because there was a lot of love and caring and I know I did an incredible job, but I want to remember her first as my mom.


Something else I started doing is writing down the things that make me think of her throughout the day. She collected anything with butterflies on it, so I think of her whenever I see a butterfly. I have a list of things so far...and it is kind of cool to realize how much she is interwoven into my life. Just the other day I thought of her while washing my hands in the restroom...I flashed to a memory of when I was a about five years old in a public restroom with her.


Something else I started several months ago is keeping a journal of my AD experiences with my parents. I found that so many "wild" things happened each time I saw them that I could not stop thinking about these things without writing them down. It was almost like telling someone about it so it would be remembered and I could let it go. I found it to be very helpful in letting things go and moving on.


I am helping my dad get through this process too. They were married for 54 years and both were diagnosed with AD in 2010. He did not fully understand what was happening when she passed away (I had to stop treatment in order to follow her advance directive wishes...very tough). He has been worried we did not make all the right decisions and try hard enough to save her....that was tough to hear that he was having these thoughts (and only because of AD and him not fully remembering the 2.5 weeks in the hospital before she died). I am so thankful that I could honestly tell him we did all we could and I have no regrets about any of the decisions. He was so relieved at this answer and seemed to calm down about it. I'm glad he asked, but it is so heartbreaking for me to realize his angst.


Anyway, that is a bit about my journey so far. I think we need to give ourselves a break on how we are grieving. Grief will come at its own speed and when we are ready for it. There is no right way or wrong way to do this and none of us can take a shortcut through the process. Just hang in there and take it one day at a time.