Doesn't Look Good

• By jmichelle
• Posted March 13, 2009 at 9:14 am
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Dear Gigi,

I am not an expert so I don't want to say that he can't come back from this. I can only speak as to my experience and from others who have been in a similar situations. Miracles do happen every day... know that!! But also be honest with yourself that unfortunately this beast takes our loved ones from us everyday as well. I am concerned, as I stated the other day, that he is so weak. What does his doctor say? What about the hospice people...didn't they start this week as well? Please contact his Doctor and ask those specific questions. If he has stopped eating and drinking... that is not good. He will need to have IV fluids to keep him going.

I pray that your Dad can beat this and I pray that you will find strength to get through this. I lost my Mom a month ago... I have walked in your shoes. I never gave up hope and neither did my Mom. You can send me a personal message if you want to talk some more.

Jodi

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• By Family4Me
• Posted March 13, 2009 at 9:52 am
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Hi Gigi,

I agree with Jodi, if you haven't asked hospice, you definitely should. They should be able to give you some realistic information. I too have been in your shoes..lost my dad 10 days ago. Did hospice give you the "blue book" when he started hospice care?

Remember, miracles do happen. Hang in there..sending prayers your way.

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• By irmaly
• Posted March 13, 2009 at 11:44 am
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Gigi, know that you and your family are in my prayers every day. Has Hospice come in yet? This is very important in my opinion.

I want to add another thought.

After fighting sclc for a year, there was no evidence of the cancer, and yet my father grew weaker and weaker. He ended up falling, having a seizure, and continually losing strength. In the end he could not walk, talk, or swallow.

He, too, was a fighter and did not want to stop trying the beat the cancer. I asked Dr. West what could be causing my father's continued neurological problems in spite of no evident cancer. He suggested we consult a neurologist and also suggested the problem could be that the cancer had gone into the spinal cord and/or that there were cancer cells in the brain that were simply not evident on the MRIs. Before continuing any treatment or other therapy, we had a spinal tap conducted on my father. Indeed, the fluid sample indicated the problems standing, walking, confusion, etc. was the result of the cancer going into my father's spinal fluid. At that point, we knew not to proceed with further treatment or therapy. Yes, this was very hard, but at least we KNEW where we were, what the problem was, and didn't put my father through such hard therapies in his weakened state, therapies which would have offered no more quality NOR quantity of time.

I am not suggesting you have a spinal tap done for your father. I am just offering this as a suggestion for you to ask your doctor about before proceeding.

I also want you know it will be okay. I know that's hard to hear and understand right now, but it is true. My father died peacefully surrounded by family, thanks in large part to Hospice. The truth is his death was much easier than what we all went through (him included) the last few weeks. What an advocate you are! You should be very proud of yourself--I guarantee your father is very proud of you.

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• By DESIGRAM
• Posted March 13, 2009 at 3:45 pm
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Hi everyone, yes hospice was called but he sent them away saying he wanted to continue treatment. Two days later he is no longer coherent nor even trying to eat. I don't understand but Irmaly what you say makes sense. Maybe it is in his spinal fluid. It is just about everywhere else. He has been getting IV fluids. I am pretty sure we will be calling Hospice again. He now has a couple of sores on his back even thought we get him out of be everyday. But because he does not move around to much himself it is not enough. I told my stepmother I can't see how he can possibly continue treatment this way and she said she did not want to take my hope away. I told her I would always have hope. The family is starting to gather. My sister is coming in from out of state, my niece also. it probably may be last time they see him. His sister has already said her goodbyes. Friends are dropping by to pay their respects. It is so, so sad. Then try to explain it to a 9 year old. Gigi

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• By irmaly
• Posted March 13, 2009 at 5:38 pm
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Gigi, I don't know how all this works, but if he is no longer coherent, I would be tempted to call in Hospice again. The reason I say this is for the ability to get the drugs that will help him so very much. I am so sorry.

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• By sheilabgood
• Posted March 13, 2009 at 7:33 pm
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So so sad. That 9 year old will live and learn. To die is part of life. I pray for you and your family and celebrate the time you have/had with your father.
My heart is out to you. God Bless.

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• By pattyp1
• Posted March 13, 2009 at 7:46 pm
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hey Gigi,
the 9-year old in me cried in pain when my daddy got sick - as I am sure yours did also - but, as along as your daddy is breathing, you should have hope and know that you are the luckiest person in the world to have your daddy with you
hope, prayers, and hugs
Pat

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• By Family4Me
• Posted March 13, 2009 at 8:58 pm
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Hi Gigi,

I can say that I do understand what you are going through. We had to explain this to our 7 year old and 3 year old who were both Grandpa's girls.

CALL HOSPICE..you need to get hospice involved. They will help your Dad and the rest of your family get through this. Dad's social worker even gave us tips on how to talk to our kids about what was happening to Grandpa.

We lost my Dad 10 days ago, 3 weeks after he started hospice care. For 3 weeks there was help available when we needed them, and we could call whenever we had questions come up. In the end, my Dad passed away peacefully with his family around him. We believe that the cancer had invaded Dad's brain the few days prior to his death. He was confused and forgettful (how do you forget you're dying?). He had lucid moments during his last day on Earth and is finally pain free.

Hang in there..you will get through this. Now..take a deep breath and yell DAMN CANCER!! You'll feel better for a couple of minutes..seems to help me.

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• By DESIGRAM
• Posted March 13, 2009 at 10:15 pm
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Hi everyone, I have just gotten home from picking up my niece up from the Philly airport. Fun! Hospice has been called. They are bringing some supplies tomorrow and other things that he will need on Monday. He was in and out today, I guess this is it............Although would you believe he asked if he still wanted to do chemo can he come off hospice. Unbelievable. He is the strongest man I know. I hope if anything ever happens to me I can be as brave. I have been talking to my granddaughter and bringing her over to my Dad's . She wants to be there. I was not sure, but my granddaughter says God has a plan for us all. And even though Pepop won't be here it is just his body that won't be here. Did I tell you she was a smart cookie? I think she is handling it better then me. Thanks to everyone. Gigi

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• By irmaly
• Posted March 13, 2009 at 10:55 pm
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Gigi, know we are thinking of you and are with you. Please keep us updated.

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• By SHAKING2
• Posted March 13, 2009 at 11:19 pm
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Gigi, My heart goes out to you and you family. Your Dad is trying to be so strong and his body is just not cooperating. Know that we are all thinking of you!

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• By MaryRVF
• Posted March 14, 2009 at 8:58 am
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GiGi--I am thinking about you and praying for peace and comfort for your family. I think we are about to go down this final strtch of the path with my mother as well--she is deteriorating daily. (((HUG)) We are here for you!

Mary

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• By jmichelle
• Posted March 14, 2009 at 10:23 am
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Good Morning Gigi,

I just wanted to let you know that I'm thinking of you and your Dad every day!
Your Dad seems so much like my Mom. She was so brave and fought until the very end!
Kids are very intuitive... sometimes more so than us grown-ups. They know what's going on...
I'm glad you've got your family around you. We're here for you!!

Jodi

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• By DESIGRAM
• Posted March 14, 2009 at 11:44 pm
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Today he slept most of the day. He is now not getting out of bed. He hardly talked at all today except to answer yes or no answers. Just trying to reposition his legs causes him extreme pain. You just don't want to touch him. We have to crush his pills to powder form so he can take them with baby applesauce. I can't wait now for hospice to start. Amazing they are only Mon- Fri. Are they not needed on the weekends? The nurse came out to dress his pressure sore but that was it. Equipment won't come until Mon. We are getting him a bed that has an air mattress that will keep the pressure off. So in the mean time we change his position every 2 hours. My granddaughter was saying tonight that she wished there was world where there was not death. I said there would be to many people. She said no it would be HEAVEN. She amazes me sometimes the way she sees things. Thank you all for you kindness and I pray for all of you and yours. Gigi

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• By Julie5350
• Posted March 15, 2009 at 12:51 pm
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My thoughts and prayers are with you. This is exactly what happened to my mom. She was too weak to have chemo, we started her on Tarceva, she was unable to eat and this was the beginning of the end. Hospice came in and they were wonderful. It's been 19 months since my mom is gone and this is the hardest thing I ever had to go through in my life. I was her caretaker. If you want email me at jeljess@aol.com. I understand how you feel. Sometimes they just can't fight it anymore.

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• By Diba
• Posted March 15, 2009 at 3:08 pm
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Hi Gigi,

I am sorry you are going through this. Stay strong. It is a deja-vu for me with my Mom only 9 weeks ago. These next few days are not going to be easy, but stay strong. Call Hospice if you need anything or have any questions - they should have a 24 hour nurse on duty who will at least call you back to explain what you can do to help. One of the things my brothers and I wanted to know was what to expect and when. We knew it was the end of her journey but we did not know what to expect next and more importantly what she might be feeling, sensing or hearing. Hospice was good with that. Remember, even if he does not seem responsive, he can probably hear you and understand what you are saying. I sat and talked with my Mom a lot in our last 3 days together. I sat by her bed and I walked down memory lane reflecting on the happy and funny times and would ask my Mom..."Remember when...." I know she could hear me. I just wanted to fill her mind with memories of her life, funny times, how grateful I was for everything so not to allow her the time to think about any pain or discomfort. I am sure your Dad can hear you. Do talk to him a lot. Take out a photo album of you growing up and talk through the pictures. I know I mentioned this in my other posting, but it was really important for us to tell both of our parents it was OK to let go and that even thought life will not be the same and we would miss them every minute of every day, we would be OK. Even if it did not feel like it at the time. They need to hear this.

I am keeping you and your family in my closest thoughts.

Hugs
Lynn

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• By CeeAnne
• Posted March 15, 2009 at 5:02 pm
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Gigi,
My prayers are with you and your Dad. I lost my mom 17 months ago, and while it seems like yesterday, it does get a little easier to deal with.
The air matress wil make him much more comfortable and be sure to ask Hospice for ANYTHING you might need. My Mom's team was awesome!

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• By DESIGRAM
• Posted March 15, 2009 at 8:44 pm
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Tonight my sister kissed him goodbye and he said phew you smell like garlic, just before, I looked at her husband and he had tears in his eyes so of course I start crying then we busted out laughing. His wife said you think that's bad he tells me in the morning I have bad breath, he said you want me to lie. My granddaughter said just when you think Pepop is gone pieces of him come back. Also this evening it was just he and I in the room and he asked me if I wanted to cuddle and to come lay beside him, then he sang me a song. What a beautiful memory I'll always have to cherish. Gigi

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