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coming from caregivers forum, mom passed 5/23/14
DaughterofMarie
Posted: Monday, June 23, 2014 5:54 AM
Joined: 12/16/2011
Posts: 345


My moms journey with AD ended on 5/23 /14.  She lived at home until June 2013 when she was hospitalzed with diverticulitis.  After that she became total care and had to be moved to a nursing home.  

Mom was a passive, pleasant AD sufferer.  She really had no behavioral problems.  I think all the way through her disease, she was further along than we thought.

Even when at home , she rarely wanted food, but oh, she loved her dark chocolate Ensure!  She continued with that at the NH.  And then the swallowing issues began, first as nectar thick, and then honey.  Gradually she drank less and less.  

Hospice was able to tell me initially that if her current intake continued, she was concerned about her being with us in a month.  A week later, she told me mom had days.  I spent as much time as I could from then. 

I was with her all day on her final day.  She had begun to mottle and was having increasing apnea.  My daughter and I planned to spend the night.  Then the mottling cleared and her breathing was normal.  At 12:30 am I said to my daughter "we better go home and get some sleep, we are going to be doing this again tomorrow". We left instructions with the nurse to call us if anything changed, otherwise we would be back in a few hours.  The nurse called me at 5:30 am to tell me mom had passed.  I do not feel guilt at not being there.  I think maybe mom wanted it that way.

My mom was a wonderful woman.  Kind, caring, loved her daughters and grandkids.  She never hurt anyone.  And had to end her life in a NH having every need 

taken care of by someone else.  And she never complained.

I miss her so much. 


KML
Posted: Monday, June 23, 2014 11:46 AM
Joined: 11/30/2011
Posts: 2105


Daughter of Marie:

 

I am so sorry and I understand how much you miss her.  The only thing I can say is that for our loved ones who passed, for them it is relief from the circumstances and condition their bodies have taken them.  For us, we grieve, we miss them, we're not ready as they are.  Give yourself plenty of time to process everything that has happened, don't rush your grief, it has a timeframe of its own.  Your mom was fortunate to have a loving family who cared for her.  She's free now. 

 

My mom passed away almost 14 years ago from Alzheimer's, my father just two years ago from Alzheimer's.  I still miss them both so much, some days it's more intense than other days, comes in waves, and in between are good memories, happy memories.

 

You take care of yourself.


MLB61
Posted: Monday, June 23, 2014 12:10 PM
Joined: 12/2/2011
Posts: 726


Dear DaughterofMarie -- How lucky your mom was to have you with her on this long journey.  Two years ago, I sat with my mom for her last few days.  I was honored to spend those quiet hours with her.  She passed away after I went home for some sleep. I like to think that she wanted it that way. 

 

Now that your mother has passed, please be gentle with yourself.  Give yourself time to grieve both your mother who passed and the mother that you knew before AD. Sending you heartfelt condolences and hugs... 


 


Little Wing
Posted: Tuesday, June 24, 2014 3:52 PM
Joined: 5/15/2013
Posts: 146


I'm so sorry about the loss of your mom.  We all know - for them it's time to go, to get away from this evil festering disease.  But for us..... we're alone suddenly, missing our mom.  Take care of yourself, take your time, don't be surprised when you're not even thinking of something and your eyes start to leak!  You're lucky, weird word to use, in the fact that your mom was a passive patient.  That might make it harder to lose them, I'm not sure.  My mom was pretty aggressive towards the end and in her lucid moments (two of them) VERY unhappy and wanting to go.  So it was a blessing when she went, she decided it was time and was gonzo, good for her.  But I miss her.  The happy pre-Alz memories will come to you soon enough, and that's almost like another stage of grief - there seem to be two or three. The actual passing of the person we love, the passing of the diseased person and then, when you have some time go by, the grief of losing your true mom, the one from most of your life.  Man this disease really sucks.  Hang in there, come visit.  Let yourself feel whatever you're feeling, nothing is wrong or right, it just is.  Peace to you.
DaughterofMarie
Posted: Tuesday, June 24, 2014 7:35 PM
Joined: 12/16/2011
Posts: 345


KML, MLB61, and Little Wing,  Thank you for your replies.  

I am glad that mom was able to be free of this awful disease.  Her last week of not eating or drinking was heart wrenching.  Knowing she was going to die but not sure when. 

I do feel myself tearing up unexpectedly.  Going to see mom was an every day thing, so every time I pass the NH, it is a reminder.  I also work part time at the NH. Boy was that hard the first time I went back.  And my 14 year old, bless her, still goes to visit all the ladies we grew close to while visiting mom.  

  Sadly, both of my girls feel they don't remember Grandma before she was sick.  I am hoping they will regain some o those memories.

 

This disease really sucks.  Until you have experienced it, you have no idea how all encompassing it is.


shacronin
Posted: Wednesday, June 25, 2014 6:35 PM
Joined: 8/30/2012
Posts: 264


Hi Daughter of Marie,

I am so sorry for your loss.  Your experience is so similar to mine.  I lost Mom on May 16.  My brother and I had been with her all day on the 15th, with my daughters, my husband and a few more coming in and out as well.  Then at 9 pm, my brother and I decided to get some sleep, thinking the same as you, the next day would be difficult as well.  I got the call at 12:30 am that mom passed peacefully at midnight.

I, like you, do not feel guilty for not being there right when it happened.  Sometimes regretful, but my mother loved me so much and knew how much I loved and cared for her over the past many years.  She was always very appreciative.  So I know it was her time, and her way of going.

I, like you, spent so much time caring for her, I'm at a bit of a loss right now.  I'm happy she is at peace.  I will move on, but it is still so hard.

God bless and watch over you.


one daughter
Posted: Thursday, June 26, 2014 10:25 AM
Joined: 1/30/2013
Posts: 1980


I am so very sorry for your loss. I'm afraid & hurting over the fact that I may be next in line.  You are a very special person to take care of your mother until the end. 

DaughterofMarie
Posted: Thursday, June 26, 2014 8:21 PM
Joined: 12/16/2011
Posts: 345


One Daughter,  I know you are scared.  The waiting is a terrible thing, as we know there is no getting out of the final outcome.  Just keep loving your momma.  You ha ve been amazing through all of this.  Do not feel guilty about the time she was in MC.  She needed to be there at that time.  She was not safe.  Now that her disease has progressed, it is actually easier for her to be at home.  

Spend whatever time you have left with your momma by just loving her.  Be there.  Be present in your mind.  Be aware of all that is going on between the 2 of you.  However much time you have left, it is time you will always remember.  Do not spend this time beating yourself up over the past 3 months.  You have done an awesome job caring for your mom.  I will be looking for your posts, keep us updated.


DaughterofMarie
Posted: Thursday, June 26, 2014 8:27 PM
Joined: 12/16/2011
Posts: 345


shacronin,  we certainly do have a similar story, don't we.  

Even at work, I was constantly getting calls from the NH, hospice, or my dad.  I keep waiting for my phone to ring with the next emergency.  

I know eventually there will be a new normal.  Just like all the adjustments we have made over the years of our AD journey, we will adjust to life without our mom's.  

I will be thinking of you.