Monday, March 8, 2010

What Can You Do?

For years I never really thought about care givers much. I knew people who called themselves care givers and I just kind of glossed that over. How hard could it be? You’re there anyway; what’s so hard about helping someone out?

I am not afraid to admit when I am wrong and I have to tell you I was not only wrong on that one; I was so hugely wrong it was what slang now refers to as an EPIC FAIL. You all know by now that my mom suffered from Lewy Body Dementia (LBD) for about the last ten years of her life. As the disease progressed Dad gave up much of his life in order to care for her. My sister and I who live close helped as much as possible. But, Dad is not one to ask for help from his kids easily. It goes against the way he was raised. So it was quite some time before the truth began to sink into my thick skull.

As I spent more time with my parents I began to see. When Dad had open heart surgery in the summer of 2007 I understood perfectly. Yeah, care giving is a lot of every day stuff. But it’s an added weight of responsibility. It’s keeping track of medications and doctor visits. It’s comforting and calming when the loved one’s disease rears its ugly head. It’s being available 24 hours a day.

All entwined with the day-to-day responsibilities is the emotion. Watching a loved one suffer is hard; not being able to do anything to lessen the suffering is excruciating. Sometimes I think the toll on the mental health of caregivers is harder than the physical toll.

Thomas B. Grayboys is the author of Life in the Balance; a book about being struck in the prime of his life by a couple of devastating diseases. (You can read my review of his book here) He is a physician so he is acutely aware of what he faces. But, he is also a husband who is acutely aware of how his health affects his wife. He recently made this statement, “This journey with Parkinsons/Dementia ain't no picnic. Lest you hear whining about the "why me" syndrome, look to the right and see someone worse than yourself. My first book was lean regarding spousal support. If we do a sequel, we will address this issue.” It’s a potent reminder that illness doesn’t just affect the person who has it.

Despite the hardship of care giving most any care giver will tell you that they do it willingly. They may be tired and weary, but they would never walk away from the job. When you love someone you give until you just can’t anymore.

What can you do to help a care giver?

1. Offer to help out with household chores or errands.

2. Bring meals they don’t have to prepare.

3. Stay with their loved one even for a few minutes to allow them to step back from responsibility and renew.

4. Call them just to say, “Hi, how are you doing?” But, be cognizant that it might not be the best time to talk.

5. Ask about their loved one. Be careful to talk about their loved one as a person and not a disease.

6. Learn about the disease that is affecting their loved one.

7. Be a listening ear. Sometimes there is nothing you can do to help, but listen.

8. Remember that just because they talk about problems doesn’t mean they are asking for solutions. Sometimes they just need someone to hear what they are going through.


  1. Tamara is 100% correct. I love givers are not asking for solutions, just for someone to listen and care.

  2. Having had both of my mothers become the primary/sole caregivers for their husbands, one with Lewy Body Dementia, I am acutely aware of the physical, mental and emotional toll it can take. And then when the loved one passes, there is such a sense of relief which leaves them with guilt to deal with on top of grief. Being there in whatever capacity you can is invaluable to a caregiver. Offering positive support through their grieving process and letting them know that it is reasonable, normal and certainly not wrong to feel relief at the end is valued beyond measure.

    Thank you Tamara for your thoughtful insight and for putting Lewy Body Dementia before the public.

  3. Thank you both for visiting and commenting.

    Anonymous #2 I was struck by your comment at the end that reassuring someone who is grieving and feeling guilt that what they are feeling is normal and not wrong. That is so very true, and so easy to lose sight of when you are in that process.

  4. Thank you for your words, they are greatly appreciated. This is a very lonely disease people don't like to be around because its the long goodbye which is sad. On the phone with my friends and our children I try to be really happy and talk about them and what there doing. I have almost forgotten what a normal life is like, going out for a cup of coffee and feeling light hearted. It is certainly an experience where God gets your full undivided attention. I once read when Jesus is all you have Jesus is more than enough. Thanks again and God Bless you.