If you could do it all over again....

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If you could do it all over again....

by coxforever on Fri Jul 05, 2013 07:20 AM

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If you could do it all over again, what would you do for your loved one, what would you say before this brain cancer ends the fight?  

I'm caring for my mother who has GBM IV and I follow my gut instinct when I'm prompted to do something, I do it.  Lately, all of the to-dos that are pressing (My Mom's finances, appointments, meals, clean-up, grocery shopping, etc.) and my 3 kids are taking my focus away from t-i-m-e with my Mom.  Plus, I get the feeling she wouldn't mind some of her own space back every now and then, my sister and our families have moved in to her house to take care of her and her declining condition.  

Thank you in advance for your ideas on making the most of the time I have left with her.  If you could do it all over again.....

RE: If you could do it all over again....

by coxforever on Fri Jul 05, 2013 10:14 AM

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I really wish I could figure out how to delete this message, it suddenly feels so inappropriate. Please understand, I mean well. If you can telle how to delete a message posted, I would appreciate it! :)

RE: If you could do it all over again....

by jon4156 on Fri Jul 05, 2013 01:19 PM

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...I'd do the exact same things.

The real world tends to get in the way of things we'd rather be doing, but there's no resolution to that unless you have enough wealth not to work and can hire others to do those pressing things.  You don't have to be physically with your loved one all the time.  Taking care of those pressing real world issues relieves their burden and is probably worth as much as a good conversation.

RE: If you could do it all over again....

by coxforever on Fri Jul 05, 2013 07:47 PM

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Thank you @jon4156 , really, REALLY needed to hear that.

RE: If you could do it all over again....

by SarahGrey on Sat Jul 06, 2013 02:57 AM

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Hey, no worries about posting anything here.  Chances are, if you have a question, many other people do too.  ;)

I posted something on June 23rd about my advice for everyone.  I don't know if you'll find it helpful or not... 

Wishing you all the best with this...  :(

Sarah

RE: If you could do it all over again....

by SarahGrey on Sat Jul 06, 2013 03:16 AM

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PS - two other bits of information that I learned and felt was important to pass on...  I was VERY happy to have learned these things...

1)  Despite all the changes you may see your loved one going through (physical, mental, emotional, etc...) never, ever forget they are the SAME person they always were.  Just now they are struggling with a "monster" in their brain.  :(   But they are the SAME.  They still FEEL exactly the same.  So, if you get frustrated or angry, don't talk to them in a way that you wouldn't have when they were healthy.  Never treat them in a way that you wouldn't have when they were healthy.  They can't help if they've become handicapped.  They can't help if they get confused.  They can't control much of their bodies at times...  It's not their fault.  It's never their fault...  It's the ******* cancer...  :(  Even at the end, if/when they're comotose or nearly so, always talk to them and treat them as you always did - with love and respect...

2)  No matter what, and even through a seizure, they can hear you!  In my husband's last two months, he had his first grand mal seizures.  We were in a rehab facility and I was with him every minute and when the seizure happened I didn't know what to do and the nurses were minimally helpful.  But I stayed beside him as the seizure was going on and kept talking softly to him.  I kept trying to make eye contact and I looked at him softly and lovingly and not with the freaked out and scared feeling I had.  I softly told him to keep breathing and try to relax and he would be ok and it would be over soon.  After the first, came the second within a few minutes...  I did the same...  After the seizures, he fell into a deep, snoring sleep (as the nurses said he would) and I kept talking to him, gently and softly.  I joked and acted normal and tried to "bring him back" and I believe it worked.  Even as he was snoring, I saw his eyebrows begin to respond to me...  After he awoke hours later, I asked if he could see and hear me through the seizures?  He said yes and that it DID help him...  And that even as he was snoring and out of it, recovering, he heard everything and it helped.

Remembering all of that, as my husband neared the end of his journey, I kept talking to him...  About a week before he passed we were holding hands and he couldn't keep his eyes open.  I was talking and talking and finally shut up.  lol...  The moment I did, he lifted our hands and I asked "you want me to keep talking?  I'm not talking too much??" and I laughed.  He squinted his eyes as if to say "no."  And I kept on talking.  :)  About nothing and about everything... 

And in his final days, I kept his favorite music playing 24/7 (softly).  I couldn't tell when he was awake or asleep and figured if he was up at 3 am and would be going crazy with nothing to do, at least he could listen to his music.  And again, I always talked to him...  always held him...  and I never let him forget for a moment how much I loved him and would always love him. 

Oh - and when it gets to that stage, I've read (and also did) that if you're going to leave the room, just say "hey I'm going to get a drink, I'll be back in 5 minutes."  or "I'm going to take a shower, I'll be back in 10 minutes"...  Just let them know you didn't abandon them and approximately when you'll be back.

Oh!  I have a third thing.  :)

3)  If/when it gets to the point when they can't keep their eyes open...  and the **** nurses in the hospitals and rehabs ALL need to listen to this one...  Before you touch them, just say "hey, I'm going to touch your face" or "I'm going to sit next to you now" or "I'm going to swab your mouth with water..."  One nurse at our hospital was very lucky I didn't deck her when she suddenly shoved a suction hose in my husband's mouth - without any warning - and then nastily said to him "don't bite it!"  WTF???  Imagine if your eyes are closed and you can't open them and some ahole shoves something like that in your mouth?  Grrr...  (yes, I'm going to send a letter...)   ;)   (that nurse was a special piece of work, on several occasions actually - which is why my letter will be especially detailed)...

Anyway...  Sorry if I've gone on and on too much here.  I just really think these things can help a lot of people...  This disease is so horrid, anything we can do to help our loved ones is soooo important...

Wishing you the best,

Sarah

Carolynbmaes Carolynbmaes
(Inactive)

RE: If you could do it all over again....

by Carolynbmaes on Sat Jul 06, 2013 04:31 AM

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Wow that was lovely SarahGrey , thank you for sharing.....carolyn

RE: If you could do it all over again....

by coxforever on Sat Jul 06, 2013 05:35 AM

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SarahGrey I hope you know what a gift your message is to me, to us all. Thank you. This is the kind of stuff I want to know. I do feel like my Mom is exiting and a new version of her shows up everyday. I'm having a hard time not withdrawing from her a bit. It feels like a fine line I have to balance, her confused self, her strong self and her frustrated self and all of the stuff in between. I will be sure to read your other post with advice, you have a way with words and your knowledge is a light.

RE: If you could do it all over again....

by bftgirl on Wed Jul 10, 2013 11:34 AM

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My dad passed away on April 12, 2013 from a GBM. He was dagnosed in March of 2012 so we had just over a year with him after his diagnosis. The last four weeks of his life my brother and I dropped everything and stayed with him. We had the most amazing four weeks together! We laughed and told stories and made sure that he left this earth with no regrets! My brother has five children and I have three so I totally understand where you are coming from. It is so difficult but I promise you that you will be so thankful that you took care of your mom and spent those final days with her. There was nothing left unsaid between my dad and us and it brings me so much peace now. The last words we said to each other were how much we loved each other and that we would see each other again. Don't waste one moment with her because you won't be able to get it back! It is a hard place to be in because I felt so guilty for being away from my husband and children but I had a great support group who helped me during those days. People think we are crazy for having done this but my dad wanted to go on a boat ride one last time - my brother and several of my dad's friends literally picked him up and put him in our boat and took him for a boat ride three days before he passed away! The hospice nurse told us there was no way we would be able to do it but we did and he loved every minute. He could barely speak because he was so weak but he thanked us several times for fulfilling his last wish! My advice is to love your mom and fulfill her wishes. May God bless you and your family during these difficult days! Will keep you in my thoughts and prayers.

RE: If you could do it all over again....

by Bee_Rich on Wed Jul 10, 2013 12:26 PM

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Every body,

Thanks for this info, as it helps me (a patient) help me talk to my wife about issues that will arise. Helps to prepare both of us for the inevitable

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