The boys and their grief…


Vic and her beautiful boys
Vic and her beautiful boys

Today, Jared (16) was called in by the school psychiatrist.

The psychiatrist spoke to him at length about the stages of grief.  Jared loves facts.

Thanks to Google I am well versed in the stages of grief and constantly try to monitor where the boys are in the process.  I did not stop to think that knowing the stages, in detail, would give them a sense of comfort.

Ten years ago we were told by the doctors that Vic had maybe 5 years to live.  The boys were then 6 and 4 years old.

At the age of five, a child may have thought of death as a deep sleep from which the person would eventually awaken, (like the princess in Sleeping Beauty).  At seven, the child may believe that only grandmas and grandpa’s and other elderly folks can become ill and die—but not little kids or their parents. Age 12 they know that death can happen at any time…

Jared developed a sugar problem at the age of 6…due to the stress of Vic’s illness.  Over the years he has developed a weight problem as he stress eats.  His school marks have dropped and he has lost interest in sport, his friends and life.  He is a Type 2 Diabetic.

On the surface Jon-Daniel appears to be coping far better than Jared.

He excels in school and has immersed himself in sports or hobbies. I think what may really be at work here is a defence mechanism known as sublimation. I believe that Jon-Daniel has over the years subconsciously channeled his strong feelings of grief into a more “socially acceptable” outlet. He directs his attention solely to areas where he feels comfortable.  It is his way of regaining control over a world that has been jolted out of orbit.

Having the intellectual capacity to grasp the implications of death doesn’t necessarily equip teenagers to cope emotionally with the tragedy. Adolescents typically appear to feel grief more intensely than adults, especially if one of their parents has died. The Adolescent Life Change Event Scale (ALCES), which mental-health specialists use to help quantify the events that are the most stress-inducing in teenagers, ranks a parent’s death as the number one cause of adolescent stress. Second is the death of a brother or sister, followed by the death of a friend.

The stress started years before Vic died.  The boys grew up knowing that their Mommy was ill and in a lot of pain.  The realization actually only hit home with them in 2007 when we told the boys on a couple of occasions that Vic was dying.  In hindsight it would have been better if we never told them but at the time I believed it to be the right thing to do.  I could not lie to the boys and tell them Vic was doing well when she was fighting for her life on a ventilator and the doctors were turning off the ventilator.

It was clear with Jon-Daniel over the years that he harboured resentment towards Vic when she was in hospital.  In his eyes Vic abandoned them…his way of coping was to “harden” his heart.  He would literally ignore her or act up when she was ill…  Over the past year he however “softened” his attitude towards his sick mom.

Because adolescents are so sensitive about their “image”, they may feel self-conscious or outright embarrassed by displays of grief and struggle to suppress their emotions. This can also be a means of protecting themselves.

As a family we experienced “anticipatory grief”.  During the past year especially we resorted to black humour. There is no “right way” or “wrong way” to mourn.   Jared told me today that he asked his Church councillor last year whether you can mourn someone whilst they are still alive….

Grief is often expressed in one of the following ways:

  • Depression
  • Changes in conduct or acting-out behaviours
  • “Perfect” behaviour
  • A decline in academic performance
  • Refusing to attend school
  • Turning to alcohol or illicit drugs to numb the emotional pain
  • Seeking solace through a sexual relationship
  • Overeating or under-eating
  • Sleeping more than usual or not getting enough sleep
  • Physical symptoms

It is said that a teenager who loses a parent is also subconsciously mourning the end of the childhood he’d led up until now.  However in the case of Vic the boys have potentially regained a childhood…I just hope and pray it is not too late for them to have a childhood.

Five Stages of Grieving

Shock / Denial

This is a protective mechanism that helps the person to function for the time being. With denial, the person may refuse to believe what happened. For instance, one teen was waiting for her friend to come to her graduation party and kept texting him to see when he would be there. Finally, she got a call from his sister telling her that he was killed in a motorcycle accident. She refused to believe he was dead, however, and reacted by telling the sister she was lying. Of course, his friend was experiencing shock. During shock, the person can function as though nothing happened, but may feel like she is in a surreal world or place.

Anger

Often there is blaming others for the loss or lashing out at people. Sometimes people act out their anger in other ways. The mother of  a teen realized she was blaming her son for causing his own death after she began telling his friends, “Please, don’t do this to your mothers.” In essence, she was saying to her son, “Look what you’ve done to me.” The anger needs to be processed, though. The mother began to realize that her son was a teenager and that teenagers take risks. Teenagers’ brains aren’t fully developed in the area of judgment, so they don’t gauge risks the same way as an adult. Also, there were other factors that contributed to her son’s death besides his risk-taking behavior. Working through the anger helps a person to move through the other stages of grieving.

 Bargaining / Magic

This often involves either cutting a contract with yourself, asking your higher power to take you out of the situation or fantasizing that this is some sort of dream and tomorrow you’ll wake up and it will never have happened. This stage helps the person to feel some control over the situation. For example, when one mother saw her son in the hospital emergency room lying dead in a body bag after all attempts of resuscitation had failed, she laid over his body begging God to breathe life back into him, praying for a miracle.

Depression / Grief / Sadness

This stage involves a lot of “what ifs.” The person now turns the anger inward and blames herself for the loss. Often this is false guilt, though, and the person really had no control over what happened or no real way to prevent it. This stage provides an opportunity for the person to grow spiritually and perhaps further develop spiritual beliefs as she searches for the meaning or purpose of life, death, pain and suffering. Even if the person is somehow at fault, perhaps the person’s actions or shortcomings are being used as part of a greater plan.

Acceptance / Forgiveness / Resolution

Accepting the loss doesn’t mean you like what happened. It does mean that you are trusting that life can be good again in spite of the hurt and pain the loss has caused you. Sometimes we need to forgive the loss or perhaps someone who has directly caused our pain or grief. Forgiving means letting go of bitterness and revenge, which only harm us and not the offender. To be unforgiving means we are not moving on and letting go, but continuing to allow ourselves to be hurt by the other party or the loss.  We feel more powerless when we keep wanting something from others that they cannot give us. Perhaps this is an apology or maybe a change of heart. Nevertheless, we can always grow and move on without seeing any change in the other person or getting back what was taken from us. We take back our power in the situation when we begin reversing the negative consequences in our lives and perhaps by finding new purposes and meanings for our lives. http://www.cincinnatichildrens.org/service/s/surviving-teens/stressors/grief-loss/

Grief never ends, but it does change in character and intensity.  Grieving is like the constantly shifting tides of the ocean; ranging from calm, low tides to raging high tides that change with the seasons and the years.  I know this from my parents and BFF deaths.

We will meet with the Hospice councillor that the boys saw last year – they connected with him.  Maybe it is time to start Jared on an anti-depressant….

We love the boys so much.  I wish we could wrap them in cotton and protect them from the world.  They are so beautiful and have these AMAZING personalities.  They are not difficult or rebellious teenagers.

I wish I knew what to do.

Who is taking care of the caregiver? 5.7.2012


When my Dad was ill with Alzheimer’s, I subscribed to two forums/support groups.  I suppose I am not good at letting go because I have not left the groups despite the fact that my dad lost his fight against AD on the 20th of May 2011.  On the other hand Alzheimer’s is a terminal illness and there is a lot of synergy between my Dad and Vicky’s journeys.  I don’t think I would have gotten through my Dad’s journey if it had not been for the Caring.com group.  http://www.caring.com/home-care.  The practical advice of caring for an AD patient was of immeasurable help.  The members support helped us as a family in understanding the destruction of Alzheimer’s and recognizing the stages of the disease.

So when I received the latest post: “Who is Taking Care of the Caregiver While the Caregiver is Taking Care?” written By Carol Blackwell Alzheimer’s Reading Room, I was delighted.  I am in such a depression and totally at a lost as how to get out of it. http://www.alzheimersreadingroom.com/2010/05/whos-taking-care-of-caregiver-while.html

I just knew there would be solid, practical advice in the article.

Carol Blackwell’s opening question is: “Are you taking care of yourself? You can’t be there for them if you aren’t there for ‘you.’ Your mood and stress affects their mood. It surely isn’t easy and life is sometimes stressful and difficult. Here are some things that helped me—you can decide if they will work for you.”

Exercise

Carol Blackwell wrote “I know you may be thinking you have no time to exercise because you are so busy taking care of your loved one and too tired at the end of the day. I say, that is exactly why we need to exercise.”

Right on Carol.  I don’t have time.  My days are very long and I don’t get a lot of off-time.  Last year Danie and I went for a walk every night.  Sometimes the boys joined us.  It was great and I miss it.  But I have decided that I will start exercising today!

Volunteer for service to others.
Carol Blackwell wrote:  “I imagine you are now thinking I am really weird. How can we find time to work for others when we are struggling ourselves? For me, initially, I found it was easy to sit in the house and feel sorry for us. We didn’t sign up for this disease invading our lives, we had just had gotten to the point where we could be free from work constraints, etc. Etc. Unfortunately, sitting in the house feeling sorry for us didn’t help much. It wasn’t fun and served no purpose except to make me crabby and Bob depressed. No one wants to be around crabby people.”

Carol you are weird.  I don’t have time to sit and do anything.  I have a career, a household to run, two grandsons to fetch and carry, Vic to take care of…  For many years I was very involved in working with the less fortunate.  I however believe that in the Chinese Proverb “Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime.”  Done and dusted.  One day I would love to do some community work again but for the time being I have to concentrate on my family and their survival.  Selfish – maybe…  For now that is the way it has to be.

Do things you enjoy—you deserve it. 
Carol Blackburn wrote:  “What do you find fun and what gives you pleasure? It is different for all of us. I enjoy Wii games—I love the Wii Fitness Plus activities. They are fun. “

Tick.  I love my Children and grandchildren.  I love the patter of little children’s feet in the passages of our home, the sound of children’s laughter, and their little arms around my neck.  I desperately miss my UK grandchildren.  I am permanently miserable when I think of them.  I miss them with every fiber of my body.  Sometimes I am so weepy that I cannot even Skype with them.

I am so happy that Lanie and Tom have moved to Johannesburg.  Now we see them and the girls on a regular basis.  We spend a lot of quality time together.

Yuri, our youngest grandson asks his Mom whether he can’t come visit his Oumie every day before school…

Liza (the youngest daughter) and her husband have finished sailing around the world.  I look forward to flying down to Cape Town to visit with them.  As soon as Vic is able to cope without me we will fly off…

Vic finds the noise a little distressing.  But the little ones know Aunty Vic is ill and are so good!

Carol is right.   I enjoy having the grandchildren around and I deserve to have my grandchildren around me.  Grandchildren are the joy of my life!  And I love playing Cityville on Facebook.

Consider meditation/yoga.
Carol wrote:  “Research has found that taking time to meditate and to engage in yoga is beneficial in reducing stress.”

Maybe one day when I have time… and the energy.

Don’t be a martyr.
Carol wrote:  “Martyrs may be noble, but they really aren’t much fun. You can’t do it all and you shouldn’t have to. Find help if you need it.  Are you in a support group? Check the Alzheimer’s Association link to fine one near you. Join it—it will help to find others who are going through what you are. “

“Is there someone who can come in for a few hours and let you take a break? Someone from church?  A friend? There are people who would love to help us, but we don’t ask. Ask. You owe it to yourself and your loved ones!”

My dearest friend, Gillian, wrote:”I would like to half your work and cares.  Put you in a bed for sleep therapy.  But I know you won’t trust a soul with your family”.  Few people know me as well as Gillian does.  I cannot leave Vic.  There is that beautiful John Lennon song “He ain’t heavy, he’s my brother”.  Vic ain’t heavy she is my baby.

I am trying to get Hospice involved.  Danie does help a lot and so do the boys.  Esther bathed Vic on Tuesday whilst I was at a meeting.  The church and I deserted one another some time back.  I don’t have many friends.

People have their own lives.  We live in a world where we don’t have time for other people’s problems.

Only a mother who has watched her child suffer will understand the despair of another mother.  Will understand how difficult it is to face every day, the depth of despair when you cradle your vomiting child in your arms….to say “Just one more hour baby” when she begs you for pain medication…

Smile or laugh each day.
Carol Blackwell wrote:  

We do.  Today I watched Rango with the boys.  It was so funny.

Cut yourself some slack.
The wise Carol Blackwell wrote:  “Everyone has ‘blue’ days. It’s OK to have a ‘pity party’ once in a while. It just doesn’t help to let those days happen too frequently. Also, don’t beat yourself up. We can’t always be calm, patient, understanding and saint-like. We are all just doing the best we can. Wallowing in guilt for occasional impatience won’t help either.”

This week I am truly wallowing in self-pity.  I have been guilty of impatience, I have lacked understanding.  I am petrified that Vic’s pain and suffering will continue for many more years.  It is strange that Vic is having a better week than she has had in three months.  As Esther said, her eyes are bright and she has mobilised pretty well.  She is less tired… What if this vicious cycle of pain and suffering continues?

Don’t lose hope.
Carol Blackwell wrote:  “There IS a cure for this awful disease. Out there—somewhere, someone is working on it. We just don’t know it yet. It will come. Keep the faith, baby!”

Just as there is no cure for Alzheimer’s at this stage there is no cure for Osteogenesis Imperfecta.  But there may just be a cure for the adhesions that I believe will ultimately cause a fatal obstruction.  Today I found a website where a doctor who claims great success with the treatment of frozen abdomens.  On the surface it seems very positive.  http://www.prweb.com/releases/2012/5/prweb9432209.htm

Anyone who has ever wrestled with God can understand the bargaining prayer. I have bargained with God all of Vic’s life.  If there is a cure I will do this or that…. For MANY years I have put the Church and God ahead of Vic and my family and yet all my love and commitment has resulted in further pain and suffering.  I know this paragraph will result in many emails or comments but I ask of you “Do not judge me if you have not walked ten miles in my moccasins!”

So for today and maybe the rest of the week I will hold onto my new hope.  “Hope removes the blinders of fear and despair. Hope opens up our minds and allows us to think positive under dire circumstances.”  Until I receive a reply to my enquiries…

To all my friends, cyber friends and family thank you for your support and love!  Yesterday I considered stopping the blog as it has opened up fears that I have suppressed for so many years. I however think it is something I must do – for myself.