Caregiver Advice - Caring For A Loved One With A Brain Tumor

I came across an article today that I felt said a great deal about what it's like to be the caregiver for a family member that is faced with a brain tumor.  Even though it was written about Alzheimer patients and their caregivers, it very clearly expresses what the caregivers of brain tumor (especially GBM, or glioblastoma multiforme) patients experience as well.

"Family caregivers assisting a person with deteriorating brain functions experience several common emotions during the middle to later stages of this disease. The person closest to the ill person may feel guilt for past misunderstandings that can not be resolved now, sadness as he no longer sees his loved one showing the recognition of his presence that accompanied their earlier relationship, sadness as each ability to care for themselves is diminished.
The family caregiver moves through stages of denial, anger at the "roll of the dice" that made their loved one vulnerable to this disease, questioning of their faith, anxiety about his future and his ability to deal with the challenges ahead, fear of the financial burden caused by long term care and embarrassment over changing behaviors of the ill person.
Support group meetings offer families an opportunity to express these concerns in a safe environment where other caregivers will understand and perhaps offer hope for the future...a changed family dynamic where people make adjustments in their roles, find sources of strength, accept the physical and mental losses that accompany this disease and know that they are not alone."

Here's the link to the story.

There is such a storm of emotions that you experience on a daily basis.  So many changes in daily routines that need to be addressed, doctor appointments, medications that need to be administered, prescriptions that need to be filled, medical forms and releases to be filled out, insurance statements to organize and medical bills to pay ... and then the added stress of taking care of the needs of children and other family members.  Keeping extended family and friends updated on the condition of your loved one, maintaining a presence at your job (since you are now the breadwinner of the family, and disability payments don't kick in for 6 months after the diagnosis), etc.  It's overwhelming, to say the least.

I can only look back, from the vantage point of 3+ years later, and say that I could not have done what I had to do without God's help.  The sensation of being "carried" through that period of time is one that lives in my memory.  Not that I and my family weren't experiencing all that was happening to us and around us - we most certainly felt the heartbreak and confusion of dealing with all that GBM's can dish out as they tear through the brain - but even when things seemed the worst, there was the sense of unseen support.

If you are struggling with issues as a caregiver, make sure that you surround yourself with a support team for yourself.  You will need to have people that you can call on; whether that's to talk to over a cup of coffee, come and stay with your loved one while you run to the story or the pharmacy, pick your child up from school or take them to soccer, etc.  Sometimes it difficult to talk openly to people about what is happening in your family and in your life at this time.  But it's very important that you take advantage of your resources, in order to keep yourself from burning out.

You owe it to your loved one to be the best caregiver that you can be for them.  You are stronger than you realize, but remember that you don't have to go it alone!

I've Moved!

I guess I didn't post about this on this blog, but I have moved to a new blog.
Yes, I started a new blog as part of moving on with my life.
While this blog has focused mainly on my grief for the past two years, along with some of the changes my daughters and I have gone through, I feel like it has run its course.
The new blog is called "Starting Over ... Again" and I feel like that is what I have begun to do this summer.
This summer marked the two year anniversary of my husband's death.
While I know that there is still healing to be done, I feel that my daughters and I have made huge strides in that area.
So to make a clean break, I started a new blog.
Here it is:

Starting Over ... Again.

I hope you will join me there.

You can also follow me on Twitter:

Or you can check out and "Like" my new blog's Facebook page.

I hope to see you there, or around, soon!  :)

Answering Questions Children Have About Death

Kids may have a lot of questions about death.  I know Rachel did.  She was 8 years old when Robby died, and even though she didn't ask many questions early on, she has asked many questions over the course of the past year (and asked some questions more than once.)  Her biggest fear was that something would happen to me, and the question she asked the most was "What will happen to me if you die, Mom?"

Here's a book that might be helpful for those who are answering questions and trying to explain death to a young child:



Here are some typical questions that may be asked by the child when a parent has died:

Is death like sleeping?
Death is different from sleeping. When you go to sleep your body still works. You still breathe and your heart beats and you dream. When a person is dead, his or her body doesn't work anymore. Remember that children who are told that death is like sleeping may develop fears about falling asleep.

Why did they die?
If the death was from an illness, explain that the person's body couldn't fight the sickness any more. It stopped working. Make sure your children know that if they get the flu or a cold, or if mom or dad get sick, their bodies can fight the illness and get better. Their bodies still work. Explain that people do not usually die when they get sick. Most people get better. If the death was from an accident, explain that the person was hurt so badly that his or her body stopping working. Explain that when most people get hurt they can get better and live a long, long time.

Will you die? Will I die?
Children are looking for reassurance. Let your child know that most people live for a very long time. Children also need to know who will take care of them if a parent or guardian dies. Let them know who to go to for help if there is a family emergency.

Did I do or think something bad to cause the death?
Maybe your child had a fight with the person who died. Maybe your child wished this person wasn't around to get so much attention from other family members. Maybe your child said, "I wish you'd go away from me," or even "I wish you were dead." Reassure your children that saying and wishing things do not cause a death to happen.

Will they come back?
"Forever" is a hard concept for young children to understand. They see that people go away and come back. Cartoon characters die and then jump up again. Young children may need to be told several times that the person won't be back ever.

Is she cold? What will he eat?
Young children may think the dead body still has feelings and walks and talks under the ground. Some children might imagine a cemetery as a sort of "underground apartment complex." You may need to explain that the body doesn't work anymore. It can't breathe, walk, talk or eat anymore.

Why did God let this happen?
Answer questions related to God and your faith according to your own beliefs. You may also want the counsel of your clergy. It's okay to not have answers for everything. Children can accept that you, too, have a hard time understanding some things. It is best to avoid suggesting God "took" someone to be with him, or that "only the good die young". Some children may fear that God will take them away too. They may try to be "bad" so that they won't die, also.

Returning to School
Going back to school following a death can be difficult. You can make this easier by helping your children with possible answers to questions and remarks. Schoolmates may not always be sensitive to your children's feelings. Tell the child that, if they don't want to, they don't have to answer questions. Explain that others may be uncomfortable talking about the person who died. Your home can be a place where you and your child can talk about and remember the loved one. You may want to talk with the school principal, your child's teacher, the school social worker, or counselor, to plan for a surviving child's return to school. You may also want to discuss what information you would like shared with his/her classmates.

Taken from How Can I Help Young Surviving Children

"Learning to Breathe Again"

Find it at Amazon.com

There is a book that I have been meaning to find - it's written by Christian singer Tammy Trent, and it's called "Learning to Breathe Again."  I found a bit about it online, and wanted to share what I had found.  My next stop is the website of the local library, to see if I can't reserve this for the next time I venture in there to pick up a DVD or book.  :)

"Christian singer/songwriter Tammy Trent and her husband had a fairy-tale marriage, right up to their romantic vacation to Jamaica in September 2001. But on a routine diving excursion, her husband Trent never resurfaced and was later found dead, changing Tammy's life forever. She took a year off from music to grieve and begin healing, and is now using Trent's story as part of her testimony and ministry. Tammy tells her story in her brand-new book, Learning to Breathe Again, in which she tells of their wonderful romance, Trent's tragic death, and how she has been picking up the pieces since.

In the following excerpt, we pick up the story two weeks after Trent's death and shortly after the funeral, when Tammy is returning to her Nashville home. She had asked a neighbor, Shannon, to pick her up at the airport and take her to the house.

We didn't say a lot on the ride from the airport. But when we pulled into our neighborhood, I began crying. Shannon reached over and took my hand, but neither of us said anything. She pulled into the driveway. "Are you sure you don't want me to go in with you, Tammy?" she asked.
"I'm sure. But thank you, Shannon."

"If you need anything, you know I'm here." She lived just a couple of doors away.
I nodded, thanked her, and gave her a hug.

Then I punched in the code to open the garage door. Hearing the familiar noise as it rumbled up, a morsel of memory flashed through my mind: Trent and me coming out through the garage, carrying our luggage to the car, big smiles on our faces and happy to be on our way to Jamaica.

My eyes fell on Trent's yard shoes, lined up next to the door leading into the house. He wore them when he was mowing the grass or working outside, and he always took them off before he came inside. I looked at those shoes and pictured Trent leaving them there, lifting out one foot, then the other.

I opened the door and stepped into the house. Everything was exactly as we had left it. There was the DVD lying out beside the TV: Patch Adams. We had watched it together the night before we left for Jamaica. Trent loved that movie, and we had both wiped away tears at the end, where Patch loses the love of his life.

I walked quietly through the house. I didn't weep uncontrollably, but the tears rolled down my cheeks, and occasionally I covered my mouth to keep from sobbing aloud. I sat down in the living room and looked around, then I got up and walked through every room on the first floor.

Finally I started up the sixteen stairs, clinging to the stair rail to pull myself up every step. I stepped into our bedroom and looked around at everything as though I'd never seen it before. And yet it was all so familiar: the pillows arranged just so on the bad, the picture on the dresser, Trent's underwear on the floor. I smiled, remembering how I'd said, "Honey, pick that up," but in the rush to leave that morning, he'd obviously forgotten it.

In our bathroom, I rubbed my hand along the big bathtub we'd shared so many times. I imagined Trent sliding under the surface, holding his breath. There were candles all around the edge of the tub, and I noticed a little matchbook leaning against one of them. Not knowing why, I opened it up, and there, in Trent's writing, was a message to me: "Hi, TT!" He'd drawn a big heart around the words.

It was as if he had left that little matchbook for me to find at exactly that difficult moment. My heart lurched, imagining him writing the words.

Inside our walk-in closet, I pulled a bunch of Trent's clothes off the hangers and sank to the floor, burying my face in them. I lay there a long time, weeping and trying to breathe in Trent's scent, trying to feel his presence again in those rumpled clothes;

A little bit later, I walked into our office. I started the computer, and as the screen lit up, I caught my breath when I saw a little yellow square in the lower left-hand corner. It looked like a sticky note stuck there on the screen, and it said, "Tammy is who I dream of. Can't wait to see you."

Can't wait to see you.

I sat there, stunned, by the messages Trent had left for me to find. First the matchbook, and now the computer. I was amazed at how Trent continued to comfort me, even from heaven ..."

Here's the site where I found this excerpt.

You can find Tammy's book at Amazon.com

And the grief goes on ...

In a previous post I talked about the vacation that my daughters and I just returned from ... a week of sun and fun in Southern California, seeing Disneyland and many other fun attractions - and making memories.

But now we are home, Oldest Daughter has returned to college and Youngest Daughter is still enjoying another month of summer before school starts.  I am back to work, having done all the laundry that required doing and weeded the garden that grew dramatically while we were gone.  OK, honestly I've only partially weeded it so far ... but I'm working on it.  :)

Last night I sat down after Youngest Daughter was in bed, and put in a DVD to watch.  It was "P.S. I Love You" - a poor choice for the night, it turns out.  It's always been a favorite, but for obvious reasons has been hard to watch for the past year or so.  Well, I tried it again last night - and the pain was still there.  Cried and had to turn it off after about the first 30 minutes.  Still reminds me too much of the pain of losing my husband.  I have found that I am still on this road of grief ... or should I say, I had a pitstop in Grief-ville last night.  A reminder that it's not over yet.  Far from over ... but getting better.

So here are some thoughts to share, for those who are on this road along with me:

"Your Grieving Heart" - Recover From Grief website

There are three major points for you to keep in mind as you go through your "work of mourning":

• You will have your own unique way of expressing and experiencing grief. As long as it is changing, and moving, and "fluid", it is normal grieving.
  
• WHAMO! Brought to your knees again by intense grief. And you'll wonder if you are making any progress at all. You are. The passage of time assures this.
  
  
  
• It really will come to an end. In it's own time. You will come back to life with loving remembrance in your heart, ready to embrace life again without your beloved at your side. You will gradually feel stronger and more in charge of your life. It really does end.
  

New Beginnings at mid-year

This is a new beginning for me.  July 2nd, 2012.  It's been just over a year since my husband, Robby, passed away and I became a widow.  I am hoping this blog can benefit not only me, but others as well.  For me, I want this to allow me to work through some things as I slowly "hunt and peck" out my feelings and struggles.  And believe me, when you are raising a young child (and a not-so-young child) as a single mom after 20 years of marriage - there will be struggles.  Lots of them.

For others, maybe this can become a window into what it's like to put the pieces back together again.  Trying to make all the right choices, and shouldering all the consequences alone.  God has taught me so much over the past year - well, two years actually.  Ever since Robby was diagnosed with a brain tumor in June 2010, and then his passing in June 2011 and the year since then, my dependence upon God has deepened tremendously.

We had a BBQ over the weekend that mirrored the BBQ we had last year after Robby's memorial service.  Robby passed away on Father's Day last year - needless to say, June was a tough month for my daughters and I this year.  But his birthday was June 30th so we had his memorial service, followed by a BBQ for family and close friends, on that day last year.  This year we repeated the BBQ and were blessed to have several family members join us.  Earlier in the day the girls each made a stepping stone in honor of their dad for the new flower garden we are planting.

It's been a year of great changes.  Well, great as in BIG, not great as in good.  But overall, we have made it through the year in the best shape possible.  It's still a long road - contrary to popular belief, there is no set time limit on grief.  Grief continues to haunt for a long time, although things do get easier (THEY say) as time goes on.  All the first-year anniversaries and milestones have passed.  We are settling into our "new normal" - seems like our normal changes periodically.  Just as soon as we would get used to changes in Robby illness that first year and adapt to those, something else would happen and we would have to adapt again.  And the past year without him has been no exception.  Change is the rule around here, but we are not a Marine wife/daughters for nothing - we improvise, we adapt, we overcome.  Life goes on, and we know that God holds us in the palm of His hand.