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!

Just saying "No" ...

Used to be so difficult for me.  I am a people-pleaser, by nature.  I have always had a hard time saying the word "no" ... OK, not to my kids (as I am sure they would tell you) but to others who would ask me to help with projects, take over lessons for them, fill in for them when they were too busy to do what they were supposed to, etc.

But I found out this week that my curse is being lifted.  I can now use the word NO and not feel sorry about saying it!

My mom called me on Tuesday night and told me that there was an important business meeting set up for the following morning in Salem at 8 a.m.  I work with my folks on the family farm, so it isn't unheard of for me to get calls like that.  I was expected to attend this meeting.  I didn't hesitate a moment - I told her that I could not make it at 8 a.m. but would be there by 8:30.  My daughter gets on the bus at 8 a.m. and Salem is 30 minutes away.  A few months ago, I would have told my mother I would be there  at 8 a.m. and then spent the next 1/2 hour worrying about how to make that happen, and then would have ended up calling my sister to see if she could put Youngest Daughter on the bus in the morning (thereby not only messing up our morning, but hers as well.)

I am so proud of myself!  And it didn't hurt a bit.

Another example - I am a member of the local fire department rehab team (we help out on the scene of large, multi-alarm fires by supplying food and water to the firefighters), and we have some training coming up over the next two months on Wednesday evenings.  I got an email this weekend from the director of our Sunday School program telling me that all the teachers (I am one of them) will have some special meetings about our new curriculum for the next 6 Wednesday evenings ... and some of those times will conflict with the rehab training for the fire department.  Without hesitation, I sent back an email explaining that I would be available for about half the trainings, but would not be available for at least three of them due to a prior commitment.  BOOM!  No guilt, no stressing over what I would do and how I would make time for both trainings.  Just explained the situation, and went on with my day.

This is so liberating!  I love being able to say NO with no guilt.  :)
Over the past two years ... well, almost two and a half years now ... I have been at the mercy of everyone else's needs and schedules.  Doctors appointments, radiation appointments, meetings with lawyers and bankers ... everyone it seems had a say in how I spent my day, my week, my month.  But now I am finding that its OK for me to say NO ... in a loud, clear voice ... and let it be.  Not feel guilty, and not stress about what will happen when I say NO.  I have dealt with enough ... I refuse to let others make me take on stress that is not mine in the first place.  That is my declaration for my life right now.  I will choose how my days will be spent, and how I will structure the hours in those days.

I feel stronger already!  :)

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

Gotta love the family!

One thing that I am finding to be very helpful in dealing with my grief and the grief of my daughters is my family members, and our closeness - not just in proximity, but emotionally, too.  We have always been a close-knit family and I am so thankful for that now.

It's tough being the only parent.  I am the most important adult in my daughters' lives right now, and that can feel overwhelming at times.  There is no one to "back me up" when it's time for discipline, and no one to share the joys and small victories with either.  It is very lonely being a widow.  Sure, during the day there is lots of hustle and activity. Lots to be done and distractions are easy to come by.  But when the house gets quiet and dark - that's a different story.  My tears tend to catch up with me in the shower, when I am getting ready for bed each night.

It's important for my daughters (and for me) to have other adults in their lives to help and support them over this difficult time.  And let's not kid ourselves - "this difficult time" is going to be around for awhile.  Every time there is a new milestone reached, there will also be a look backward, wishing that Dad was here to be a part of it.  We carry that loss forward with us from now on.

But having their grandparents, aunts, uncles and cousins close at hand helps to let them know they are not alone, and there are others looking out for them as well.  One of Rachel's biggest fears has been that something would happen to me - that she would lose BOTH her parents.  Making sure she knows that there are family members that love her and would take care of her, should something happen to me, has helped a little to allay her fears.

We are blessed to have my brother, my sister and her husband, my parents, and close family friends whom we consider family all nearby.  The guys are on call whenever I need help with the lawnmower, or a garden tilled, or advice on how to pressure wash the house or start the Traeger grill.  And there are cousins nearby for the girls to hang out with, and enjoy some time away from Mom and her harping at them.  :)

You can't pick your family - God does that for you.  I think He did a pretty good job in my case - I feel very blessed!