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This is harder than I thought
Posted: Tuesday, March 11, 2014 9:05 AM
Joined: 5/27/2013
Posts: 37

Hi everyone, I've been coming to this board almost two years now.  Normally I don't post but for support, education, comfort. I felt the need to come here today to ask for some comfort.  My mom passed last Monday, March 3rd.  She suffered from this horrible disease for 8 years (I think she was able to hide it for three before diagnosis).

Although, I knew this day was coming for awhile, although near the end she didn't know me, although near the end she couldn't speak, I miss her so much.  My heart is broken and I'm crying as I type this.  How, how do I move on? This hurts so so much. 


Posted: Tuesday, March 11, 2014 11:30 AM
Joined: 11/30/2011
Posts: 2105

Hi Dee:


I am so very sorry for your loss.  I know how difficult this is.  My mom passed alway from Alzheimer's almost 14 years ago and my father passed away from Alzheimer's almost two years ago.  It's never easy losing someone you love.  I think having Alzheimer's makes it more difficult because we aren't always able to communicate our thoughts and words to one another.  But I have to tell you, that even though they may not be able to speak, they know you, they feel your presence and they feel your love and that brings them comfort.


I know this because my mom was unable to speak for the last month of her life.  She was sort of in a deep sleep most of the time.  But one day just before she passed, my father was sitting next to her with his head on her bed and she started stroking his head.  I believe she was aware he was near her and she was comforting him and saying goodbye.


We never want to see anyone lose so much of their life when they are living.  With this disease we loose them a bit at a time, or at least the person they used to be.  But I do believe that deep down, they are still in there.


I like to believe in the end, they are granted an amount of clarity and they see us and they hear us and they feel our love for them.


Grieving is quite a process and even though we know the day comes, it's hard to be prepared for the emotions we are going to feel.  It takes a lot of time to go through this, there is no timeframe and it's individual to everyone.


You wll get more support and comfort from the people on this site.  You may want to think about joining a grief support group or speaking with a grief counselor.  There are books on grieving.  I read one that I felt was helpful, made me feel not alone with my feelings.  The one I read on Grief and Grieving.


I find that the grief has lessened in intensity day to day.  It still crops up, I'll see something or hear something that reminds me of my parents and like a wave the grief comes again.  I think it will always be there, but in time it softens and we can remember the better times and the painful times a little less. 


Right now, your loss is so new and fresh and of course it's on your mind all the time, that's so very expected.  Give yourself time, be good to yourself and take care.

Posted: Tuesday, March 11, 2014 12:16 PM
Joined: 4/19/2012
Posts: 414

I am so sorry for your recent loss.


Please don't expect yourself to "move on", how could one do that? Accept your grief, allow it to happen painful as it is. It takes whatever time it takes, grief is not on a time table.


This is a major change in your life that takes it all out of you.


Allow your grief, embrace it, and be gentle with yourself. Grieve.

Posted: Tuesday, March 11, 2014 12:29 PM
Joined: 2/3/2014
Posts: 40


I am so very sorry for your loss. There are no words to give that will take away the hurt.  My dad died on April 30 and I am still grieving and miss him so very much. Disease or no disease...they are our parents, we remember them the way they were and we love them no matter what progression of the disease they were in when they passed away. Give yourself time to hurt and also time to heal.  We are all in that same boat together paddling through the hurt and sadness. I found that grief counseling helped me so much.  I was always the strong one in my family so it gave me a place to talk, cry and to not worry about being strong, but just feeling what I needed to feel to get through it. What helped me was that I knew that the moment he died he was no longer confused or scared, not able to walk or talk, but whole again. That did and still does give me comfort. There are people, like me, who care about you.  Please let us know how you are doing. 



Posted: Tuesday, March 11, 2014 1:54 PM
Joined: 5/27/2013
Posts: 37

KML thanks so much.  I do believe that somehow she knew we were all there with her when she passed.  We all whispered in her ear that we loved her and said our goodbyes.  I will see if I can find that book on grieving.  I know I'm going to need this message board and that book.  Thanks again.


Posted: Tuesday, March 11, 2014 1:55 PM
Joined: 5/27/2013
Posts: 37

thanks are so right.
Posted: Tuesday, March 11, 2014 1:57 PM
Joined: 5/27/2013
Posts: 37

Dulcy, thanks so much for your words of comfort and wisdom.  I know that the "journey" is never really over for us.  I have to take this one moment at a time.  


Posted: Wednesday, March 12, 2014 7:16 AM
Joined: 12/2/2011
Posts: 726

Deerenee -- First, I am so very sorry for your loss.  I hope that you read some of the older threads on this forum.  This forum is not as active as the Caregivers Forum, but I have found it to be a great source of comfort and support.


You will find that many of us found the grief stage to be harder that we thought.  I thought that I had grieved for my parents during the long, difficult journey of AD.  I was surprised by how much I grieved for them after they were physically gone.  I was relieved that they were free from this horrible disease, but I still missed them even the way that they were at the end.  It will be 2 years this spring that they are gone.  It gets easier, but I'll always miss them. 


Your mother was so lucky to have you with her on this journey.  Be gentle with yourself and give yourself all the time that you need to grieve.  Sending you heartfelt condolences and hugs from afar...

dj okay
Posted: Wednesday, March 12, 2014 3:01 PM
Joined: 11/29/2011
Posts: 1840

Hello Dee!


I am very sorry for your recent loss.  I found that after only a week after my mother's passing in August 2012, I was very much distraught and wondering how I would ever feel normal again.  But it does get better with time.  How much time depends on a multitude of factors and each one of us has to travel the grief journey in our own unique timeframe. 


Right now, I would suggest you take a lot of time to ponder what you've been through and feel the emotions that come.  Be kind to yourself and don't expect a lot of yourself, not allow others to place demands on you that you don't feel up to.  And certainly don't let anyone tell you that by such-and-such a time you will be better.  Each one of us is unique and the factors that play into our grief journey create a unique situation for you.  Your grief journey will be what it will be.


Grief counseling can help, grief support groups, and reading about grief can all help you along in your journey.  And MLB61 is right, there are a lot of great discussions earlier in this forum that may give you food for thought or words to comfort you as you read about how others are doing in their grief journey.


I have found that this grief road is as tumultuous as the caregiving road was.  Just when I think I'm doing great, I will get hit with another wave of sadness that washes over me and threatens to pull me under.  But they are getting further apart and not so intense, so I take that as a sign that I am moving in the right direction.


I think that losing those that gave us life is a very hard thing.  Aside from losing a spouse or a child, I can't imagine anything harder.  But the cycle of life and their ages means that most of us will out-live our parents.  But I found that the caregiving for my mother changed so many aspects of our relationship, that when she passed, I felt sort of like I had lost a mother AND a child in one person.  It's a devastating loss.


I hope you find all the support you need wherever you can find it.  I wish that for you.

Posted: Wednesday, March 12, 2014 6:24 PM
Joined: 12/4/2011
Posts: 3689

I lost my mother to this disease also.  It hurts like crazy for a long time, and then it begins to ease a bit.  As time passes, it might hit you hard when you least expect it.  My mother went to heaven in 2007, and there are moments when I just say out loud, "Mom I so miss you." 


Peace, Veronica

Posted: Wednesday, March 12, 2014 6:25 PM
Joined: 5/27/2013
Posts: 37

MLB61 This is sooooo true!!!

I was relieved that they were free from this horrible disease, but I still missed them even the way that they were at the end.

Thanks for everyone's hugs, comfort, and support!


Posted: Wednesday, March 12, 2014 6:29 PM
Joined: 5/27/2013
Posts: 37

dj okay, thanks so much for your words of comfort and support.  I agree that sometimes I feel as though I've lost a child and a parent at the same time. Along with my 85 year old dad; I was her primary caregiver and many times I would say to her "my little girl"!  *sigh*
Posted: Tuesday, May 6, 2014 3:17 PM
Joined: 5/27/2013
Posts: 37

Hello everyone, now two months since mommy passed.  I've had some days that were very dark and overwhelming and I've have some very good days where I was actually able to pack up some of her things and have some wonderful fond memories take over the task that I was doing.  

Now here comes the "firsts"!  This will be the first Mother's Day without her.  Wow, I'm crying just thinking of it!!!  How do I get through the "firsts" of everything?

I'm so glad that I have you this message board.  Thank you all 

Posted: Tuesday, May 6, 2014 7:31 PM
Joined: 4/19/2012
Posts: 414

Yes the "firsts" are super tough. Everyone copes or doesn't with them. I can only tell you what I did.


I honored/celebrated her. I live faraway from the grave(s), but I sent flowers and a card. The 2nd year I planted flowers for her.


Think of what you can do to celebrate/honor/pay tribute to her, it helped me, it might help you.....everyone does it different. But please know we know how monstrous "firsts" feel like.

Posted: Tuesday, May 6, 2014 7:35 PM
Joined: 6/20/2013
Posts: 311

Hi Deerenee.....I'm so sorry for your loss.  I lost my father just 4 weeks ago, and it's been a different kind of grief than the one I had when I lost my mom.  When my mom passed, I think I went through year of experiencing shock that my mother died (from natural causes, not AZD or dementia).  How did that happen?  Who gave her permission to just up and die?  and even How could God let this happen?  That was almost 5 years ago.  Mixed in with all of that was the missing her terribly.  I miss going to my parents house and mom and I sitting together and me doing her nails.  I miss talking to her about family gossip. 


With Dad it's been more of a what do I do with myself now?  Going to see him every night to make sure he was fed became my routine.   Massaging lotion into his hand and feet became my routine (he really loved that!).  I would read to him from the Bible, an activity that he could no longer on his own. I was not close to either of my parents (I was the "surprise" child when their other children were teens!), but doing these things brought me closer to my father, and he was appreciative of these gestures as he moved into his final stage (based on the smiles he gave me).


If you were a caretaker for an extended period of time, it's hard to remember all the things you used to do for YOU.  What activity / hobby did you do before becoming a caretaker?  What friends did you lose contact with that you would like to see again? And, like others have suggested, be gentle with yourself.  Let the emotions come up and address them as they come up.


Many hugs to you.

Posted: Wednesday, May 7, 2014 11:36 AM
Joined: 5/27/2013
Posts: 37

thanks farawaydaughter and CyndiR sisters and I plan on honoring her by visiting her grave and placing a huge bouquet of flowers!  I even scheduled the Monday off after Mother's Day so I can just be with myself ....if you know what I mean!  Out of the 4 daughters mom lived with me for the last 10 years of her life and I was her secondary caregiver (my dad was her primary) so yes, I spent a lot of time with her and now I'm trying to remember what I used to do prior to that!
Posted: Thursday, May 8, 2014 7:43 AM
Joined: 2/21/2012
Posts: 44



  I totally understand your pain and suffering.  My mother also had Alzheimer's for 8 years and passed away 1 1/2 years ago on September 6, this September will be 2 years since her passing. I never knew the pain I would feel in losing my mother.  I cried endless tears, even today when I speak of her, sometimes the tears come again. 


 Our mothers are part of our flesh, they live in our hearts forever and the love we share together never dies - even when they pass on to a better place, their love will survive everything.  It is especially difficult for caretakers who are long term caretakers to lose the one they love.  When we think of Mothers - we always think of a person who has taken care of US AND PROTECTED US AND WATCHED OVER US FOR OUR ENTIRE LIFE - BUT SADLY - this is not the case when a parent is diagnosed with Alzheimer's - because we have to take care of them! 


 I began taking care of my mom as the sole caretaker 9 years ago - I was driving back and forth for 1 1/2 hours each way to visit her and look in her refrigerator because she would "forget" to throw out old food, she would forget to pay the bills and her husband was sick also and was on Oxygen for COPD - she was 80 years old when she developed symptoms - then I hired private caretakers to be in the house with them because I was working and could not be there all the time they were becoming more and more helpless.  When my mother started to wander out of the house we realized it was time for Long Term Nursing Home Care.  I placed her is a beautiful facility near my home so I could visit her regularly.  I always told everyone, I was the Mommy now and she was my 80 year old daughter.  The very close relationship of a caretaker and a parent is extremely emotional at all times.  When a mother passes away after you have spent so much time to protect her and keep her well  - it is an extremely difficult loss. 


 The good news is that you will find peace with your mom's passing.  Time is a true healer - the Holidays will be very difficult during the first year - be prepared - spend time with close friends, cry a lot if you need to - and write her a letter and pour out all of your feelings to her.  If you have a faith in God or any other faith - cling to your faith - knowing that she is now finally in peace after all the suffering she endured.  I can smile again and enjoy my life again - although Sunday is Mother's Day - because I know I did all the right things, I took care of her and loved her for her entire life and still do.  I am at peace.  I know that on Mother's day I can go to the Church where she was blessed, light a candle for her and feel at peace, knowing she is in heaven.  You will find peace within yourself too - it takes time -

 God Bless You in this Difficult time of Grief -from Foxy Girl


Posted: Friday, May 9, 2014 10:51 AM
Joined: 12/2/2011
Posts: 726

The first Mother's Day was tough.  That was last year.  I am not as sad this year.  My memories are more apt to bring a smile than a tear.  I guess that's time healing, as they say.  Hugs to you and all on here that are feeling their way through the year of "firsts".
Posted: Thursday, May 15, 2014 9:59 AM
Joined: 5/27/2013
Posts: 37

Foxxy Girl and everyone who responded, thank you so much for sharing and thank you so much for words of comfort and wisdom.  I was able to make it through Mother's Day.  Much to my surprise it was the Saturday before that was the hardest???  I did feel a peace when I visited her grave site and I did cry a bucket of tears but the peace was there at the same time if that makes any sense.

Yes, this year of firsts will definitely be hard.  But, like you all told me, I did take time for myself on Monday.  I took a vacation day from work and spent the majority of the day in my garden planting.

Jo C.
Posted: Wednesday, May 21, 2014 9:43 AM
Joined: 12/9/2011
Posts: 11601

I send a soft hug to you along with my understanding.


The first Mother's Day (and all "firsts") was the most difficult.  What I now find myself doing, is placing flowers for Mother (and my grandmothers) on her grave, and talking to her inside my heart to let her know I love her and think of her often.  Sometimes I feel the tears in my eyes or a twist of sadness in my heart, but it is no longer that "raw" feeling of that first year.


Then what I have begun to do, is to give to several aged ladies who I know, one has Alzheimer's; and they have either no family or far removed family.  I send cards, make a call and often will send a small gift.  They are absolutely delighted which in turn delights me. 


I do this in honor of the memory of my beloved mother and beloved grandmother who are no longer with me, and it is my honor to be able to do this and it also helps my inner heart to feel filled with the love for all of us.


May your memory of such a sweet and poignant Mother's Day, still giving and loving, become a soft, positive memory.




So, out of deep sadness comes compassion and empathy and the gift of being able to give to others.