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Losing a parent to dementia 
Started by NatR
27 May 2013, 11:34 PM

So it is my turn.
Now I get to ask others for their input.
I just lost my mom on Friday night.  It was time.  She was 89 and lived half way across the country from me.  No way to get to her side.  No way to be there on a daily or weekly basis.  I feel guilt because I was not there for her.  I feel guilt because I am a caregiver and cant do it for my own parent.

It is nearly impossible to visit a parent three provinces away....last year at this time I was with her for a week...every day, every meal..trying to squeeze every minute to its max...

Now...her life is over and I feel like I already did my grieving...a year ago...knowing it was probably the last time to see her alive...and I was right.

With the high tech advances in cell phones and the like, my sibling was able to send me photos...so that I felt like I was there in spirit...or as much as I could be.  I saw my moms face in the pictures...I felt agonizingly ripped to know she was leaving this earth and I couldnt be there..couldnt help, couldnt comfort, hold a hand...

Now..I am flying West to honour her and be present at her funeral.
in a lot of ways I feel like I am okay...and then it hits me.  Its only been a couple of days...I feel numb too.  Maybe the funeral is when I will lose it.

My mom struggled all her life in a difficult situation and with depression that wasnt treated.   I was the oldest and witness to a lot of the heartache she had.  Thats why I feel like I let her down now...as she went through her last couple of years lost in her mind, lost in dementia, lost to her family..not able to name us, perhaps recognize a face...but not really understanding any of her life..and why she was left in a facility.

It is much easier to look in on others...and say words to help..but now..in my own situation...I feel like I am struggling with the guilt...

I quit my job of caregiving early...to care for and help with a disabled family member...I told myself that if my mom knew what I was doing she would understand ...that I couldnt do more.  But last year she asked if I was going to move there...even though she really didnt understand where I live..or even quite who I was...that devastated me.

Plus...at the time I visited her...her personal care was lacking..in a perfectly brand new and hotel like atmosphere...and that killed me...to know she wasnt getting the best of care.  It is the way it is in nursing homes..I know full well having worked the field...not enough time, not enough staff...ever.

The one big shocker that happened the night my mom died...a sibling who lives in the same town as Mom and who washed his hands of her because she left her husband..his father..due to emotional abuse...showed up at the bedside...because he was told she was dying.  It was hard for me to see him at her bedside, smiling and waving to the camera that my other sibling took his picture with...and to know he didnt care...and that he was there and I was not at the end of her life...and that it was unfair..totally.

He is not even coming to the funeral...he didnt come to my fathers funeral either..so he said ...why come now?
I say...why show up at moms room then?
How do I let go of my anger.

The other thing I should say..is that I am relieved that her struggle is over.  She was no longer having any quality of life.

So..>I will wait to see what comments any of you may have for me.  I appreciate it.  
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Reply by moderator | modératrice
28 May 2013, 5:51 PM

Dear NatR,
My sincere condolences. What a heavy burden you are placing on yourself. It remains a mystery to me why we clutch at emotions like guilt and anger when we should be kind to ourselves in our loss. You have listened and guided so many people in this community through their journeys with loss. Let us now hold you, comfort you and be my your side. It is your turn. 
Be kind and non-judgmental to the little girl who just lost her mom. You need your kindness for you now.
Love and peace,
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Reply by Cath1
28 May 2013, 6:57 PM

Dear NatR:

You are in our hearts and our thoughts and you will not be alone as you grieve.

It has been quite some time since I have communicated in this forum, but I feel honoured to return for this brief moment if only to remind you that you have touched so many other lives with your generous willingness to reveal your honest emotions and to extend to others your empathy and compassion.

As Colleen's tender message reminds you, and I reiterate, you need to be kind and gentle to yourself especially now as you become acquainted with your very personal feelings of grief over the loss of your sweet Mom. Honour your feelings.

I understand your feelings to a great degree, NatR as it is natural for you to feel you have been grieving the loss of your Mom for quite some time due to her having suffered with dementia. I have no doubt you have been in a state of slow simmering sorrrow.

Dementia certainly does inflict upon its sufferers and loved ones of the person affected with many difficult emotions. Indeed, you and your Mom had experience the painful and very long goodbye, but now you will begin to realize that she is now perfectly at peace, and in time you too will arrive at a much kinder place emotionally where peace will be restored to your hurting heart and your soul will feel soothed!

I know for me it has taken so very long to arrive at a place of quiet acceptance of my Mom's death and sometimes the sands of sorrow still shift under my feet without warning knocking me to me knees, but, two and a half years later I am more often able to recall the better memories that so ease my spirit rather than feeling lost in the hollow and inescapable sorrow of her final challenges when she, like your Mom, was living with dementia. 

I think it is wonderful beyond words that your brother was able to swallow his pride and show up for your Mom before she passed away. I say this as a mother knowing that it is what your Mom would have wanted, would have needed, as mothers don't typically judge their children as harshly or as objectively as siblings are liable to do. Your brother was able to be there and you were far away, and while I understand the instinctive feeling of resentment that seizes you in this emotionally stormy time, these feelings will do nothing to ease the sharp sting wounding your every sense as you begin to feel the enormity of the loss of your Mom.

NatrR, you had been to spend a wonderful week with your Mom last year and while it may seem to you like an eternity since then, I am sure your Mom had little concept of time. You were simply timeless to her - a true and everlasting part of her sould - always were - always will be - you are her beloved child! You need not ever compare the worth of your presence in your Mom's life to that of any of her other children as I know she loves you all no matter how far away or how close.

When my Mom was dying both of my brothers showed up and while neither had been involved in her life as much as I was, I was thrilled to see the happiness in my mother's eyes at the sight of her children together for the very first time in many long years as he lay dying.

I think it's just best for you to accept that for whatever reason NatR, you have been gifted with the grace to be there for others including your Mom and the siblings that were living closer to her and caring for her. Your support was constant and genuine and it did not detract from it because you lived at a distance, though I so understand how you may think that mattered or somehow made your love for your Mom not reach her as readily as those there beside her, but distance cannot dull the the love of a mother for her child. Maternal love is so powerful and that is why you will always feel your mother's love for you. It cannot be extinguished byt death as it will light your world for all the days you live!

You have struggled with being at a distance from your Mom but if I can feel that I know the truth of your heart  and intentions, just imagine how much more your own mother intuited you! She knows and loves you with every fibre of her being in this life and beyond, NatR, just as she loves her other children, and when it comes down to it she knew without a doubt in my mind how loyal and loving a daughter you were to her. Dwell in her love, it is living. Linger long with your memories of happier days, and you will find comfort.

Okay, I am going on and on, as usual, but I just want to wrap my arms around you NatR, and help you dispel your doubts, your anger and your fears, because I know I cannot ease in this moment your sadness. As you prepare to part with the woman who gave you life and filled your heart with love, we will be beside you, virtually, rooting for you to be strong, praying for you that you will find hope and courage in the company of your loved ones, and we will be saying thank you NatR for having given so much of yourself to us all so many times!

My deepest condolences to you, NatR - and remember, we all have such confidence in you and your ability to cope and we are so very grateful for the many times you have helped us come to terms with our own individual feelings as we have strggled to cope and to accept our personal trials and losses, and as we have celebrated each milestone of triumph. You are surrounded by love.

With great affection - hugs -xo
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Reply by eKIM
28 May 2013, 7:01 PM

Dear NatR

My heart, thoughts and prayers go out to you at this time.  I will take time, and respond later with a more well thought out response. For now, please know how much your VH community loves, admires and respects you.  your VirtualFriend  - ekim
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Reply by SherriT
28 May 2013, 7:05 PM

Hi Nat,
i am so sorry to hear about your Mom.  I so understand your feelings about being far away.  I too struggle with guilt all the time, even though I know I can't do more than I do.  I know that you are a very caring person and am certain your Mom knew that too.  And dementia is so hard.  You did all you could and try not to be hard on yourself now.  You are going to be there for her funeral and will be able to say goodbye.  As for your brother, he will have to live with his choices.  
You have been such a support to so many.  Allow yourself to feel whatever you need to feel and try and release the guilt.  You are in my prayers at this time.  Please keep us updated as to how you are doing.

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Reply by Brayden
28 May 2013, 7:28 PM

Hi NatR,
I want to send my most sincere condolences to you as I have seen you to be such a caring and thoughtful caregiver. I too have been asked at times how it is that I can reach out so readily to non family and yet do not always act the same way with my own family.
I think I know the answer. We demand more of our own family and judge them more harshly than we do of others. Try to be more understanding of how your brother thinks and accept that he is very different from you. You will feel most at peace if you can forgive yourself of negetative thoughts and forgive your family for being different from you. We all know that you are such a caring person and that your mother loved you as any mother would. You did the best that you could do and therefore do not beat yourself up. You did more than many family members that I have come across. My prayers are for you at this difficult time. Peace
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Reply by eKIM
28 May 2013, 8:57 PM

It's interesting how many people you can "touch" through Virtual Hospice, Brayden.  I often reach out to "perfect strangers" but yet am estranged from my own sister.  I feel like such a hypocrite.  Thank you so much, Braden for the comfort that you bestowed upon me.  - eKim
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Reply by marstin
28 May 2013, 11:48 PM

Hi NatR,

My heart goes out to you. This is never an easy time to go through as you have witnessed in this virtual family of ours. I think it is human nature to beat ourselves up for all that we think we should have done or could have done but we forget how much we have truly given to our loved ones. Your mom would never want you to feel guilt. You are her first born beautiful baby girl who she bestowed so much love upon. That love was etched within her heart and in her mind. I'm sure she has been incredibly proud of you and what a kind and loving woman you grew up to be.

The anger you feel toward your sibling is understandable. Your emotions are so raw right now. It will take  time to begin to let go of the pain and anger and for the wounds to begin to heal.

We will all be here for you and offer you the love and support that you have so generously given to all of us. You are such a wonderful human being and I'm sure your mom is smiling down on you.

Sending you hugs and strength,
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Reply by NatR
29 May 2013, 1:44 AM

Thank you, each and every one of you for your helpful comments - from Colleen and Catherine - Yao Brayden Ekim, sherriT - all gratefully received 

tomorrow is the funeral - an emotional day.

your objective views really make me think

if I forgot anyone, I am sorry, a long travel day - headed or bed but had to say i appreciate you all for your touching kindness to me, to all who seek out support here on virtual hospice

will write again soon, a long day a tomorrow and a long travel day Thursday  
thanks and hugs
it's nice to be allowed to be human 
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Reply by winter
29 May 2013, 2:05 AM

Hi Nat, 

It seems strange for me to be writing to someone with regards to a mother passing.  But you were there for me and listened to me rant and rave....It has been 8 months, since my mom passed away from the most horrible death, I would not have wished on my worst enemy....not that I have any..

I don't have any magicial words to help heal you,.. or make it any eaiser for you...
Myself it is just starting to easy, but only cause i am now on meds to ease my pain...that is the only thing i believe aids in my nightmares, my anguish, my heartache, my feeling as though I lost my best friend, and how can i go on, with her....she was my life....
Those were my feelings....i have spent so many hours, days, weeks, caring for her...at times i wished that i was millions of miles away, and would only hear about things, but that was do to exhaustion, physically and mentally....

At the time i was mad at family cause of their lack of caring, for me, I was only able to get over my hatred for some of them, but confronting them and telling them what and how i felt....in the end i said if you hate me now for saying what i had said, then be gone...you are not worth my thoughts, my time, my heart or in my head...I was able to get on without alot of them, and that made it better for me...

now that is me....but that aided me, i know from reading others here they believe the other way....

anyways you need to do what you believe is and will allow you to live the rest of your life in peace, know what i mean...

I am not good with words....

 anyways, you are strong and well versed in the fleld of caregiving, you know what is what, and then happens to family when they lose loved ones...

but what can i say is you are a wonderful woman both mentally and physically strong.

Your mother would be proud of you whether you lived near or far...as you said with her dementia, you had no choice to tell her what she need to hear....to keep her came, we all say what we had to do, because we love our parents, we are greatful for them doing whatever they did for us as children....and teenagers....and as adults.....we love them...

I feel for you,,,I cried the whole time at moms gathering for her death...i could not look at people in the face, I was in my own world of torrment...you know....

I just couldn't bare to be or think what life could be without her....

anyways well i don't know Nat if i helped or made your life worst...

I am sorry if i upset anyone here with what i said, but it is my life and what happened,
My family know i no longer leave them hurt me....

Nat I am thinking of you will all my heart...take care, and i hope you are able to manage....

know that your mother loved you...and that is all that matters. ok...

thinking of you

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