Wednesday, February 10, 2010

Turning the brain upside down

I am feeling particularly "unpostworthy" today.  It's not that I'm feeling bad or down on myself.  I just feel quiet, a bit tired, and not much like writing. 

But there is something that is on my mind so I will write about it.  I talked to my cousin's wife this morning.  My cousin, who I have written about before on this blog, has a brain tumor, glioblastoma multiforme Stage IV to be exact.  He and I grew up together, played together, and have remained close over the years.

The brain tumor was diagnosed not long after he retired.  He noticed his golf game was off one day and then in another week found out that he had the worst diagnosis that one could expect when it comes to brain tumors.  He underwent surgery, radiation, and chemotherapy.  He has been on a lot of medications.  The upshot of it all is that he is alive, but his cognitive skills were compromised. He cannot walk without help, has rages that alternate with quiet, has difficulty reading and with forming sentences. 

His wife has become his savior.  She has taken care of him, watched over his therapy and care with great tenacity.  She has a spiritual side that is uncompromising.  I believe that without her energetic input his quality of life would be much less.  Perhaps he would not even be alive.

But she also says many things that I find to be strange.  She believes that dead neurosurgeons are living in his brain and are helping to cure him. This morning she told me that my cousin's mood had improved greatly since the dead surgeons took his brain, turned it upside down and shook it.  I resist rolling my eyes as I'm listening on the phone.  I keep quiet and listen but not without judgment.  I have to remind myself that he would likely be dead without her. 

And now her mother who is 92 has suffered a stroke.  She will be taking care of her as well when the mother gets out of the hospital today.  I do not believe that I would want to do all of this that she is doing.  I think that I would become a hostile martyr.  Perhaps this is just another example of my own selfishness. I know that I have great compassion for those who are caregivers for loved ones.  But knowing how much self-sacrifice is involved and how her every moment revolves around my cousin, and now her mother, seems totally stifling to me. I am awed by her unwavering commitment which I am afraid that I may not have.

24 comments:

  1. Interesting. My post today is the complement, or maybe event the opposite, of yours. And yet there is truth in both.

    I hope your cousin's wife has a good team of supportive relatives and friends. I have noticed that can make all the difference.

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  2. Boy, Syd, I wouldn't be able to handle that either. At all.

    The ideas the wife has are kind of batshit, but I guess whatever gets her through the day.

    I am very sorry about your cousin.

    SB

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  3. Thanks for an honest post, Syd. It is stifling to be a caregiver with no respite. Your cousin's wife sounds overwhelmed. I know I couldn't do it. I don't have the patience necessary, and I need too much alone time.

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  4. Well you found a worthy topic to write about. I pray for your cousin, his wife and her mother. What a wonderful gift she has given.

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  5. I had so many of these same feelings when I went to visit my sister last month in Florida. She is definitely end-stage and her husband is extremely devoted and caring but a little wacky about it all. I guess the care-givers pick up a little of the unreality from their loved ones .. maybe it is a survival technique.

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  6. There are people that can rise to that kind of challenge and there are those who can't. I think I fall somewhere in between. I'm always scared that I will start experimenting with their pharmaceuticals.

    Please keep us posted on what is happening. The dead neurosurgeon thing is definitely out in left field. But you never know...

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  7. I truly truly hope she has a support system. For me, part of being an effective care taker is realizing when I need to ask for help. She sounds like an amazing woman who loves her husband. Maybe the dead brain docs are a visual for her?? Is she communicating with HER doctor?

    Wow...I do not know how I would do.

    Namaste

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  8. Hmmm. Too much. Overload. And soon to be increased. Doubled. Too much.

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  9. It's hard, lonely, and thankless work. Whatever gets her through, more power to her. There is a point where self sacrifice is not healthy, but some people feel the responsibility heavily.

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  10. wow, prayers for your cousin and his wife... wow

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  11. Well it makes you wonder, doesn't it?

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  12. I'm happy that your cousin's wife seems to have a spiritual connection that helps her along the journey. If she has unorthodox ideas of how things are accomplished, more power to her. She sounds like an interesting lady. Blessings on your cousin and family.

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  13. We are not able to comprehend what is possible through God's grace. Who knows? Maybe there are dead neurosurgeons in his brain. It sounds like a good support group might do her a world of good, though.

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  14. I'm so sorry about your cousin Syd.

    Caregiving takes a very special person. My family all shared in my grandfather's care for about 6 weeks before his passing. Even with several of us sharing for a short period, it was a very exhausting task - and my grandfather was a saint.

    Sending strength and peace to both of you.

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  15. Such a tough prospect -- are there any alternatives she might consider? It does sound overwhelming and her hold on reality might get more tenuous.

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  16. I think I'd like to hear a bit more of what your cousin's wife has to say. Aren't her words somewhat alarming?

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  17. Yikes. Are there any services she can use? This sounds kinda dangerous to me.

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  18. I am so very sorry there is so much pain in that family. My prayers are active for them, as well as for you, in hopes of you being able to accept something that appears totally unacceptable. I think you are exhibiting inimitable courage in the face of all these problems in your cousin's life.

    It almost seems as if HP has allowed cousin's spouse to have exactly what is needed in order to provide the dedicated care offered to your cousin, as well as to an aged mother recovering from a stroke. The other stuff this wife comes out with - is of course - fantasy - but maybe this is the only way she is able to process the reality of her dedicated care to needy persons. God bless her!

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  19. Great post. I don't know how I would be if I ended up having to take care of a love one. This has given me thought for the day.

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  20. im sure she really needed some1 to listen. i think its really cool that she feels she can speak like this with you without fear of being dismissed.
    listening to her is a great act of service.

    i know carers can crack if they do not take time out. i hope she gets breaks every now and again. there is a support group for carers

    http://www.carersuk.org/Home

    probably loads. lots of online stuff.
    god love er. thats a tough call.

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  21. It is amazing what we can do when we come from love. Although you may think you are too selfish to take care of someone in this way you may be surprised at how your thoughts change when presented with situations such as your cousins wife has.

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  22. I've been thinking about your cousin's wife ever since I read your post this morning. My heart goes out to her and your cousin and entire family and the hard time everyone is going through. I spent 4 years working for a man who was ill with cancer. Even with extra household help, morale support from friends, Al-Anon and having regularly scheduled ME time, Caretaker Burnout was never far away. Constant Care for a person who lived in fear from Cancer and whose brain & body was under the affects of large doses of Chemo was emotionally and physically exhausting at the best of times. For him as well as the care-takers. From what you've written here, I'm feeling concern for your cousin's wife that she may be in danger of Caretaker Burnout and in a strange and roundabout way, signaling a need for help.

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  23. I am sorry to hear about your cousin. It is a good thing you have the program to guide you.

    Your posting also reminds me of gratitude.
    I don't have a fatal disease. This helps keep me in the right frame of mind.

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  24. I love the story you relate but, as a caregiver in the past (but not to the extent of your cousin's wife), I can only offer that you get unsuspected strength to get through what must be endured.
    Before, and now, I can assure you I can't imagine how I would/did deal with it.
    Blessings and aloha...

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