Caregiver Isolation


Alberton-20120625-00559It happened without warning…

In 2002 I was on top of the world.  My career was at an all-time high, financially we were secure and I LOVED my job.  I was able to work long hours and spend time with my friends.  I was on 9 Church Committee’s and very involved with community work in the poor areas.

Then it happened…Vic had her blotched back surgery and our lives changed forever.  I spent 22 days in the waiting room outside the Intensive Care Unit.  My life ground to a halt.

We moved into a downward spiral of hospitals, doctor visits, x-rays, scans, 81 abdominal surgeries, pain, open wounds, hospital bugs, sepsis and wound dressings.  I felt over-whelmed and out of control.  Doctors and nurses prodding and touching my child.  To them she was a commodity.  But, to me, she was my life.

Slowly but surely my life changed…  I became fixated with finding a “solution” to my child’s devastating health problems.  After all, I am a Baby Boomer.  We don’t accept bad situations.  We find solutions.  We sort out problems.  I refused to accept the doctors’ prognosis as I did when she was a little girl.  I was told that Vic would not live to the age of 12 when she was diagnosed as a toddler…  I refused to accept it.  Vic not only outlived the prognosis but lived to complete school, get married and give birth to two beautiful boys.  The ventilators were turned off and Vic continued to breathe, live….

We went from one doctor to the next.  I spend hours every day of my life on the internet looking for solutions and advice; it became a coping mechanism.  I worked longer hours in-between surgeries.  Quite frankly, work became a crutch.  I spent less and less time with my family and friends…I suppose because I felt no-one understood my fear, my despair, my pain…

My fear, despair and pain became my constant companion.  My computer and the internet my trusted friend…

One day, about 7 years ago, Jared asked me “Oumie don’t you love your family?”

“Of course I love my family!  Why are you asking such a question?” I replied

“Because you are never home….”

I had to sit down and reassess my life.  Quite honestly the financial implications of keeping Vic alive and care for her was daunting.  I feared going home because I could not handle Vic’s pain….  I knew in my heart there was no cure.  The mere thought of Vic suffering for endless years were terrifying!  I could not bear to see the fear and helpless desperation in the boys’ eyes.

So contrary to what I have written before, and comments that have been left, I have not been the best mother.   There was a time that I ran away.  I was petrified of the thought that Vic would suffer for another 40 years…be dependent upon me for another 40 years… There were times that I thought to myself “There has to be more to life!”  I felt lost in the in-balance of my life.  No matter where I turned it was work and responsibility!

In 2009 my Dad came to live with us.  He suffered from Alzheimer’s.

Dad and I
Dad and I

Whilst I reached a maturity level where I realized that being a caregiver is a privilege, not a burden, our lives changed.

I started sleeping downstairs many years ago when Vic was so ill.  I was scared I would not hear her if I slept upstairs.  I slowly slipped into a habit of working late on my laptop and then falling asleep on the sofa.  This continued when my Dad lived with us.  I still sleep downstairs on the sofa – waiting for Vic shuffling footsteps down the passage, text messages saying “Can I have something for pain?” or the intercom screeching!  The intercom was the 911 call.

I slowly and inextricably slipped into depression.  My entire life was dominated by my fears for my child.  The caregiving demands steadily increased as the years passed and the situation deteriorated.  It became a dark and difficult period for the entire family.  We could no longer spontaneously decide to go to dinner, go away for a weekend or even a holiday.  Every activity demanded a great deal of planning.  We became more and more isolated as a family.

It is natural for family and friends to drift away when a loved one becomes ill. The longer the illness, the longer they stay away. By it’s very nature, caring giving is draining. It is far easier to stay home and rest than socialize outside the home.  Isolation can lead to loneliness, depression, and illness. It takes energy and effort to maintain friendships when one feels tired and discouraged.

My salvation was cyberspace.  I joined an Alzheimer support group, https://www.caring.com.  Without the support group I would never had coped with my dad’s descend into Alzheimer’s.  A year ago I started blogging on Vic’s final journey.  I have found a cyber-community with parents who also lost children, friends with a word of encouragement, a kind words.   I receive advice, support and information from a loving cyber-community.

I however realize that I need re-join life.  There are days that I just want to stay on my sofa with a blanket pulled over my head.  I fear that if I sleep in a bed I will never get out of it.  In the TV lounge there is always people.  Whether it be the boys, Danie or the housemaids.

Today I had tea with an old friend.  For almost 4 years I have not been able to see her.  She has a young son that I have never seen.  Our friendship was reduced to the odd phone call or text message.  Often she would phone and there would be a crisis with Vic.  I would say “I will phone you back” and never get around to it.  I isolated myself from friends.  I was so miserable and totally absorbed with Vic that no “outsider” could penetrate my “barrier”.

My life centred round my sick child and family.

Despite the trauma of Vic’s death and coming to terms with the horrible loss, my life has changed.  I have had tea with my new Magnolia friends and Christelle.  We go out to dinner on the spur of the moment; we have been on holiday and I spent 4 days at a Spa with my sister!  I have watched Jon-Daniel play hockey matches, started gym and started remodelling the house.  I have seen a psychiatrist and take antidepressants.  We have started Stepping Stone Hospice.

How amazing is this?

If the truth be known it is not amazing at all.  I am dying on the inside.  I cry uncontrollably – mostly when everyone has gone to bed.  If the boys were not living with us it would have been so different.  I KNOW I would still have been in bed.   I am consumed with longing for my child.  Last night I replayed 100’s of voicemail messages that Vic had left me….

“Love you Mommy…”

“Love you Baby Girl”

Published by

tersiaburger

I am a sixty plenty wife, mother, sister, grandmother and friend. I started blogging as a coping mechanism during my beautiful daughter's final journey. Vic was desperately ill for 10 years after a botched back operation. Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child. https://tersiaburger.wordpress.com

22 thoughts on “Caregiver Isolation”

  2. I am speechless and crying. I was a caregiver, too. That is why my heart is breaking. I know all too well about isolation and lonelinss. But please, Tersia, let go of guilt. You ran away – you were human. In order to cope with everything, you escaped in order to survive. There is no such thing as a perfect mother. But your love and devotion were clearly beyond what most humans are capable of. Tears are okay. You never had a chance to cry. It’s better to let them out, rather than hold them in. I’m always thinking of you and holding your hand.

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  3. first let me address your comment that you were not always the best mother, you are an amazing mother who did the best you could under the circumstances. of course you are and were depressed. that is perfectly normal. seems silly but as long as you act like things are getting back to normal eventually things really will be normal. if you let them, i still worry that you block progress. it is great to hear you are out seeing friends, now if you could just start sleeping upstairs. sleeping upstairs doesn’t mean you are forgetting vic. vic would want you to start the healing process. she wouldn’t want you to keep suffering.

    sending my love with big warm hugs to you my friend

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  4. You must allow yourself to take baby steps. I have never been through what you have been through, I have not had to deal with looking after a sick and dying parent and child, but I know depression. Make good choices for yourself and do not let the black dog eat your joy. You have the right to look towards the Son, let His light shine in you and let Him hold your hand every minute of the day. Big hug for you to get through today.

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  5. Being a good mother is not about being perfect. What makes you so strong is that you were there for Vic and her boys. You are allowed to cry and weep and bury your head under the blankets. What makes you so storng is that you don’t stay there, you get up and you make positive differences in every life you touch. That is Vic’s gft to you. For so long now everyone’s needs have come before your own, now take that time for yourself too. You deserve it. And when things get too hard ask for help.

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  6. I really don’t know what to say. I have nothing to offer that would help – especially not experience here.

    Crying alone though, holding up ‘normal’, yes, I have done. Is there truly no-one who could be beside you? Or is it they all think it’s time you’ve adjusted? I don’t know.

    I really hope for a shift for you. A shift. I am sure Vic would will you to be okay, sure she would. Comfort to you.

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  7. Tersia my dear dear friend, your pain is so great and again I recogonize the signs. You were a wonderful mother maybe not perfect none of us are, I only know one man that was ever perfect and He gave His life for us. You are allowed to cover your head and sleep on the couch it hasn’t been six months and you have a long way to go, you will leap forward one time and drop back many so take it slow ; life will never be normal again as I have mentioned before so don’t try to make it so…it takes way too much energy to hide your feelings and try to make life normal for everyone else. Yes, you need to be there for the boys going to their events helping with homework being there when they need to talk about their mom. But you need your time too, the reading of Vic’s messages to you are comforting and yet hurtful too, but continue to do so until you can read or listen to them and not feel all choked up and cry for hours; it will come and then later you wil read/listen and well up again. It is part of the process it has been 2 years and six days since Klysta passed, I still do the same things you are doing just not as frequent. I have been told that for one it has been five years since she stopped counting the days of her daughters passing another mother told me it has been 22 years and 13 days, so it will take whatever time is needed to begin the healing process just know as moms of lost children we will never be healed nor normal again in the old sense, the new normal is now and sometime in the future that normal will be defined another way. I pray for you daily my friend as I do for all the moms who have lost their child to death. God gives me strength although this month has been very dark and despondency crept in like a thief and I contemplated taking my own life, but God told me as I lie in bed to pray and as i began to pray I felt His arms surround me and He healed me of the pain in my feet. the pain in my heart like I said before we are the chosen for He knows what we suffer and that we are examples to the world of how strong His people, His chosen are. God bless you my dear one you are in my heart.~~Len

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    1. Oh my dear, dear friend – in your pain and depression you reach out to me….what an amazing person you are!!!! Thank you for your words of kindness, support and advise. I don’t think we will ever stop counting the days…I certainly won’t. Today it is 131 days. I cannot believe it is so long and so short. I will pray for you dear friend for healing…your heart will never heal but your feet will. Lots of love dear friend!!

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    1. It was very hard. I did not cope. I was lucky to be surrounded by a loving family. As a family we became isolated. Now we are consciously trying to break the isolation down. People still avoid us and our sadness but there are many kind and supporting friends out there if only we give them a chance.

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  9. Tersia, I can’t begin to imagine the pain and grief you’re holding in and suffering through. I think Vic would want you to live for her. Enjoy her boys, enjoy life and touch people the way you have been. I haven’t met a perfect mother yet, but if love was a measure, you’re one of the fullest of love I’ve known. (((hugs friend)))

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