A Family Member Tells it like it is…

Hello Everyone!  I do hope your new year is going well.  I am looking forward to hearing from you in 2014.  I also want to take this opportunity to especially thank those of you that taken the time to write comments on my blog.  My goal was to offer you a place to share your concerns and to give support.  Today I am sharing an incredible example of just how powerful this can be.  Jeannie recently responded to a blog post that I had written some time ago, so you may have seen her entry .  She has given me permission to share her comments again and so has Lauren, the social worker I asked to respond.  Please share your thoughts on this important issue…

Comment written on the blog from Jeannie:

Not sure if this is the right forum, but my elderly Mom is going through chemo now for OVCA stage 3c after extensive surgery at MD Anderson. I’m doing everything I can.. .she lives in another state and I fly back and forth like she’s down the block… have nurses, sitters, other relatives with her at all times. I can’t move there and have offered for her to come live with me till chemo is over but she refuses. So the problem: She constantly complains about how bored she is… she’s been very active and independent until all this doing all her own yard work, babysitting great grandchildren etc. She’s surrounded by people all the time… lots of multi generational family coming and going which she loves. I bought her a laptop to use in bed because she had spent a lot of time on genealogy and facebook etc online, before. My daughter, who has more disposable income than I, has hired a personal “concierge” for her so that anything she desires appears quickly. WE bring her cross word puzzles, any food she wants that can be reached within an hour, any movie .. book… etc.. .you get the idea. She has everything she could ask for yet she still is complaining about being lonely and bored. She’s almost like a child… it’s so stressful for me that I have developed something like colitis and can’t eat – losing weight almost as fast as she is. Any help would be so appreciated. Thank you.     Jeannie

Response from Lauren:

I am Lauren and I’m a clinical social worker at a cancer center in Greensboro, NC.  It just so happens that I’m also Patsy’s daughter.  Of course, my own personal experience with cancer is what led me to work in the healthcare care setting and I often hear many situations that are similar to yours.  First off, I want to share how absolutely wonderful it is that your mother has so much love and support from her large family and friends.  That truly is a wonderful blessing.
When you ask your mother what she feels she needs, what does she say?  What does she indicate as her biggest concerns at this time?
I would really recommend you share your concerns with your mom’s oncologist and get connected with a clinical social worker at her center.  A clinical social worker can assess for psycho-social/emotional needs and find ways to support the whole family.  Many people going through the cancer journey (and even more often in older adults) experience depression or symptoms of depression.  Often in older adults, feelings of loneliness or boredom can be a sign of depression. It is important for her healthcare team to rule out depression or address symptoms just like they would any other physical symptom.
From what you’ve shared, it sounds like independence is really important to your mother and she may be feeling a loss of independence/control.  A good technique may be working with your mom to help her identify ways that she can maintain her independence and possibly explore what energizes her.
I would say it’s equally, if not more, important that you and your family receive caregiver support.  I’m sure you’ve heard over and over again that “you’ve got to care of yourself so you can care for her”.  Although easier said than done, it is really important! Are you connected to any caregiver support groups?  Are you able to balance care giving duties with your other family members?  Sometimes it’s really hard to know how to “help”…yet the most important thing is to be present.
You are doing an awesome job as a daughter/caregiver!
I would love to hear from other survivors and caregivers that may have experienced similar situations???
 Lauren

Response from Jeannie:

Lauren’s reply hit me squarely between the eyes….  I was taking care of everything I could possibly think of except for her psychological spiritual needs… WHAT was I thinking?  I would just tell her she could talk to me… and try to listen but, of course, I’m really not the best person for this. She’s trying to be brave for me.  I have since called her church and having calls into the various drs and centers for resources that may be helpful. I’m so glad I posted to your blog.  May never have figured this out on my own. Thank you and Lauren so very much.   Couldn’t see the forest for the trees!

Jeannie

Have you experienced this?  What are your thoughts??

Patsy

3 Comments

  1. CRJ

    This is awesome and so important. I sought counseling as well as a caregiver for my mom when she was ill. It is hard because you think of them first before you think of yourself. I was having stomach cramping from not eating and indescribable stress. It is important to take care of everyone’s needs including the patient and the caregiver….but it is so easy to forget.

  2. Debbie Norris

    This was great. I have been both the caregiver and the patient. My mom had 3 different cancers in 6 years. She got so tired of us asking her if she needed anything and what we could get or do for her. Last year (April 2013) I was diagnosed with ovarian cancer and now know why she would get so annoyed. Having control is something both sides have very little of in this situation. As a daughter I could control what I did to help my mom stay as healthy as she could while she had treatment. As a patient all I could control was when I shaved my head and how/what I ate. Independence and control are important for both patient and caregiver. Talking with each other and really listening can help both parties have some control over an uncontrollable situation.

  3. Inge heatham

    Hi, I have just found your blog and only had time to read about your mothr’s cancer journey. You are an awesome daughter. But, PLEASE look into ‘Tears of Phoenix’ (You Tube) and/or Rick Simpson. I have had Ovarian cancer III in 2001. Then all was well until 2010. Re-diagnose. (Tumor on lung, and aorta) which is in-operable. I’ve had 1 round plus 2 chemo’s. (Carbo?Toxil and when I became ‘resistant’ we tried Doxil, which looks like Hawaiian Punch and was just as effective, for me. So. Nothing else to try. EXCEPT ‘Tears of Phoenix.” This is my 4th monthOFF chemo and ONLY the ‘cannabis oil’. It’s ingested NOT smoked. Vapors help with debilitating nausea and also creates life saving ‘APPETITE.’ Where chemo was driving CA 125 numbers UP, cannabis brought it down WITHOUT those horrid side effects. Please research.. for your mom. My son did.

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