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Life deals the hand, how to get through it 
Started by NatR
27 Aug 2013, 12:54 PM

Good day everyone,
I am usually handing out the tissues and sending cyber hugs.  But here I am again.
It's time to share a bit to all of you who are so wonderful at comforting those with loss, pain and grief.
I lost my Mom - in May.  It was expected, it was a relief to me as mom had suffered a long time with dementia brought on by mini strokes.  I had already begun the grieving process after my last visit to her a year before.  Mom lived very far away and I couldn't just visit each day or each week.  My Mom taught me how to be a caregiver, I learned from her, and followed in her footsteps.
I also supported and cared for a special needs grandchild - having left my job in long term care 4 years ago to do so.
It's the best thing I ever did - but it was also very hard on my heart.
Being a caregiver for clients is one thing.  You feel empathy, you want to make them comfortable, you do it for 8 hrs.  Then you go home.
It stays with you, you wonder how they are, but you pass off the "caregiving" baton to the next shift - and you go home to family friends, usual routines.
But when you care for a vulnerable family member for several years, day in, day out, ( that was my first two years) - its a lot.
Then after two years the situation changed, respite for family (and myself) began to happen.  The respite hours were just two days a week in the beginning, then gradually increased to five days a week.  
Despite my best efforts I still felt involved during that respite.  I thought about my grandchild, her needs, her food, her medicine, her health.  She also suffers seizures that aren't really visible to others - but I knew the signs, I responded with extra care, extra kindness when she raged and cried.  
It is really hard to give up a child to others.  She was and is my first grandchild.  Her disability is inherited from me.  I never knew about it. There was no way we could know until it happened. Genetic testing revealed the answers - but didnt relieve my pain, my guilt.
Now, my grandchild is 18.  An age when most would be graduated and moving into an independent life, education, job, relationships, these things will not happen.
What does happen is a graduation to adult world (new case manager for that world, new paperwork, new status, new claims for funding) it's not just my problem, but it causes a lot of grief for the actual parents who must deal with all of this.
But my life has now changed a lot.
My grandchild now has 24 hr care with workers.  She will go to school til she is 21.
She is adapting better than I am.
I need to have a break from the caregiving, but I never want to stop being a grandma.
Also, I completely moved into my own little apartment - and out of the family home - so it is a real adjustment.  I am fortunate to have friends to talk to - and I am dealing with things - but some days I wake up and wonder what to do, wonder how my grandchild is, feel guilty for not being able to keep caring for her.  
But I am making my life over - its been taking a lot of support but I am coming out the other side.
I wanted each of you to know that reads this - that we all get faced with things we don't want to face, that we can't control.  I am so grateful for friends and family who listen to me over and over.
Being involved in the forum reminds me that we all are dealing with changes we don't want.  It's hard when it revolves around the Heart, our loved ones, a personal slant.  But be encouraged - we will make it.
I am so grateful to Colleen our moderator who is so kind, patient and thoughtful, so appreciate this forum and website for sharing inner most thoughts.
Hugs to you all who are travelling the same path, in different ways.
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Reply by JennJilks
28 Aug 2013, 1:11 AM

Nat, what a tough time.

When I quit work in 2006 from stress and family caregiving, there was a great hole.
I know you ahve it in you to fill that hole.
You will visit. You will find a ton to do. I know you.
You are strong, brave, proud, and a true friend. You will be needed.
You know you are always loved.
This might be a break for you. Your chidren will still need you. My daughter spent the weekend caring for her step-mother with dementia. Her father had colon cancer surgery. She's been juggling her 3 & 5-yr.olds and I've been trying to give her moral support.
Your kids will always need that. I'd rather DO something, but you gave your kids roots and wings.

Deep breath.
Begin a hobby.
Do something you've always wanted to do.
Volunteer. Your skills are invaluable.
One chapter has ended. Another begins.Remember, you are a beautiful person.
All my deepest respect,
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Reply by Brayden
28 Aug 2013, 1:39 AM

Thanks NatR,
I was thinking as I read your post that you were fortunate to be a care giver and not a politician because you are so honest. My heart goes out to you as you move along in your journey. Changes seem to come more quickly the older we get and we have to draw on our lifes experiences to cope. I can assure you that you will never stop being a grandmother. I am confident that you will find your way and some time down the road we always look back and wonder, how did I do it. I am with you all the way,
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Reply by KCBJ
28 Aug 2013, 2:02 AM

I'm so sorry.  But you are stronger than you think. If you weren't you wouldn't have been such a valuable support to others. I ditto everything Brayden has offered. it is never easy. But you took the first step - separation.  Nothing to feel guilt about. Please take care. It is our turn to be here for you.
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Reply by eKIM
28 Aug 2013, 2:09 AM

Hi NatR

 I am sending you my most sincere thoughts.  I love knowing extraordinary people.  Having known you through Virtual Hospice, I could see that you are one extraordinary woman.  It shouldn’t be a surprise that you are extraordinary in other aspects of your life.  I am referring, of course, to your selfless care of your granddaughter.  You are the embodiment of the phrase, “To have a child is to forever have your heart outside of your body.”

 I can tell you that this is an “expert opinion”.  44 years ago I married an extraordinary woman who also is an extraordinary Mother and now extraordinary Grandmother.  We have raised two daughters, who turned out to also be extraordinary women.

 NatR, we have one thing in common.  My mother also lived far away when she passed away.  What prevented me from feeling guilt about “not being there”, was the knowledge of her unconditional and unlimited love that she had for me.  Her love was stronger than my limitations.

 Hearing your story of the care of your granddaughter was very touching.  You must try to eliminate your feelings of guilt over not being able to do more for her.  Guilt will only create negative energy that will wear you down needlessly and diminish the amount of positive energy that you have for the contributions that you can make. 

 We are composed of only so much energy.  Try to have as much energy as you can in the form of positive energy.  Tenderly love yourself for the fine person that you are and the extraordinary contribution that you have made to your granddaughter.  We cannot fully love others if we do not fully love ourselves.

 You did not know about the genetic problem that you passed down to your granddaughter.  It is not healthy to feel guilt over something that you did not know.  Hey, I just told you that you are an extraordinary woman, NatR.  Give yourself a break.

 Reducing your care-giving role for you granddaughter and letting others take over is a necessary transition.  Moving into your own apartment can become an exciting adventure as you open your life to new horizons.  Good for you, NatR. 

 NatR, you said, “I wanted each of you to know that reads this - that we all get faced with things we don't want to face, that we can't control.”  I recently met a person who felt well in June, got a diagnosis in July, and now, in August they are in hospice, to die.  Sadly their story is not uncommon.

 It is so important that everyone learns to appreciate what they have and to enjoy it moment by precious moment.  AND YOU CAN’T DO THAT IF YOU ARE LIVING WITH GUILT AND REGRET.  You are wasting the only thing you have for sure – the present moment.

 So, sweet girl.  I send you thoughts of loving-kindness.  Stay connected, continue to tell your story, and bask in the warmth of the love that flows your way.

 Your VirtualBrother   - eKim

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Reply by kathykastner
28 Aug 2013, 2:23 AM

NatR: You, who are a caregiver by nature, nurture and profession - losing two major females in your life that you really cared about and cared for. no wonder you're suffering as you are: I can only imagine you're feeling bereft and at a loss.

I'm sending good karma that you forgive yourself and banish the guilt to the land of no return.

I wonder: is this the first time in your life you have only you to take care of? I don't doubt there are many parts of you that could use some IRL nurturing.

(Would that your virtual universe could come together briefly for an IRL hug and maybe a shot of tequila)

And by the way - lest you think your caregiving days are over.. think of all virtual people you're taking care of (intros on twitter anyone?)

With much affection appreciation and admiration
(and of course virtual hug)

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Reply by claudia c
28 Aug 2013, 3:21 AM

Dear NatR,

I wish you strength and courage to embrace your new self and your changed life situation in all the creative ways you can.
I believe you and your granddaughter will rediscover each other in time and come to  share new experiences together as she grows and finds her new self in the different environment she is now in.

Hugs ClaudiaC 
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Reply by NatR
28 Aug 2013, 4:45 AM

Dear ClaudiaC, Kathy,Braden,eKim, KCBJ, Jenn,

thank you, each of you, from the bottom of my heart for giving me your input.

i am grateful to know you all virtually. I appreciate  your words of advice and caring.  It is obvious that you all have extra caregiving in your makeup.

thank you for listening, I will try and take your advice to let go, to move forward, to not feel so guilty, to embrace each day.

sharing on the forum it is a great relief to hear an answer from others.  You all have life experience that I value.

Brayen you made me smile with the "honesty" comment.  I surely would not survive in politics.
Jenn, eKim, your words  helped, it's good to know I am not alone also.

ClaudiaC, thank you for reminding me that life continues in a different way.  We just change direction;) 

KCBJ Barbara, thank you also for your words, it means a lot.  Encouragement is just what I need.

Kathy, thanks to you for understanding and although we have yet to meet in Real Life (that tequila will be my first;) I know from seeing your videos and hearing your voice, that you also have a great understanding of grief and loss - and you are devoted to helping others.
i am also glad we are on Twitter and the many contacts we share.  

in appreciation, 
i will try and face tomorrow with a better attitude and look for the new challenges in my life.

sometimes people think life is boring and stodgy for older adults or seniors, it's not that way fOr me. Actually you are pretty right on about me needing to take care of myself - its a hard one to focus on me.
but I am trying! 

 I know that each day brings new beginnings and I will do my best to keep smiling;)
I do have much to be grateful for 
hugs to all  
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Reply by Tian
28 Aug 2013, 12:33 PM

Dear NatR

After the tremendous upheavals you have suffered recently the big news is that you are not superhuman although it does take super strength to divulge what you have been experiencing. From the great wisdom you have displayed on this site I think you know how you should optimally be reacting and feeling but it is quite another thing to put that into practice. You have been much too hard on yourself. You know that so much is beyond our control and nothing exemplifies that more than the genes we inherit and pass on to your children. But you are still the NatR that I have come to admire and respect and I see that you are doing what you have to do. It takes time.

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Reply by Tian
28 Aug 2013, 12:34 PM


Pass on to our children 
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