Roller Coaster from H*** continues for my dad

LivingFaith

An update on my dad.

We thought last weekend after his party was going to be the end. He had all the signs, the preist came, and dad was ready too. No words had gone unspoken. He made it through the night, but on Sunday he was a mess, falling, not making sense, ect. We were afraid because it was not safe for him to be at home. Dad refused to go to the hospital.

Monday came and mom got him to the doctor. His BP was 80/40, O2 sats of 82%, Hgb 7.1, severe dehydration, and mental status change. Off to the hospital he went. Since his change happens so rapidly the dr and us wanted to find out what was going on. Oh if we only would have known.......

This is the part of knowing when "Enough is Enough". They pumped him up with fluids, 2 units of blood, antibiotics, and O2 thinking all the action from the parties coupled with the dehydration and crappy blood counts where the cause of the delirum. He got CT scans which showed mets in both lungs now, more liver, the primary tumor is pressing on his trachea and voice box (dad can only whisper) and the dreaded BRAIN METS!

That's a game changer. "my dad" isn't coming back. He was relesed from the hospital now but is suffering with delirium, aggitation, anxiety with moments of being totally lucid. It is scary. We were not prepared at all for this. The fluids and blood perked him up so he can walk around confused and scared. Shame on us for prolonging this for him. He wouldn't have wanted this in a million years. It is a different kind of losing of the dignity. He is angry at us for putting him in the hospital to "get rid of him". He insists he isn't dying and wants to make all these plans for next summer. I could go on with all the other mean and koo koo things he says but won't. I have to believe this is the brain mets talking not my dad. He wants us to promise him all these things that we can't so we lie to him just to keep him calm. I hate that. I feel like we are betraying him in some way. We are sticking to all the plans concerning how my dad wanted to die and live out the rest of his life, that he made weeks ago. That was my real dad, this isn't. I hope we are doing the right thing by honoring his before brain mets wishes, instead of these crazy wishes he talks of right now.

Please pray we can keep him calm and comfortable. Pray that God speaks him name soon and we can all be at peace.

Words can't describe this part of the journey but I will say it is tourture! There will be no more iv's, or blood, ect. I don't think it is fair to try and prolong his dying process. Enough is Enough. His body knows what to do from here, it always has, we need to honor it.

Sorry to be so negitive, but I want everyone to be aware of what can happen if we try to interfer too much with the process. The hospice nurse gave us great advice when she said, dying is not a medical event but too often we make it one.

Peace my friends,
Deb in NE

Donna70

so sorry Deb
Deb,
I am so very sorry you and your Dad and your whole family has to endure this. Just stick with your original program. They can give meds to keep your Dad out of pain and maybe even more sedated. It is not like you would be keeping him from saying his real last words not with the mets doing such a number on his lucidity. I know what you mean that you feel you went too far but he had to go to the hospital otherwise you would not know what was really going on. Now talk to the drs about keeping him peaceful. He needs to be watched, my Dad had mets in the brain at the end and he seized but finally he could not walk around. When he is lucid just sit quietly with him. Just make sure you and the drs are on the same line of thought, death with dignity and peaceful. thoughts and prayers are going out to you. take care,
Donna70

sal314

So Sorry for What You All Are Going Through
Deb,

My heart goes out to all of you. From what you've describe, what your dad is doing is very common from what I've heard and read. I can only imagine what it must be like to see your father acting and saying things that are so "out there". Yes, you must rememember, it isn't your dad speaking, but the illness! I know that doesn't make it any easier, but I'm sure your father really has no idea what he's saying or doing at this point.

Is there any medication that they can give him to help him remain calm? I know you probably don't want to drug him up any more than you have to, but if it helps him and everyone remain relaxed and keeps him safe, maybe it's worth it.

You, your father and all of your family remain in my prayers. "This too shall pass."! Hang in there! Jesus Loves You and is with you in the midst of this!!!

Blessings,
Sally

BMGky

You have done and are doing the right thing.
So sorry you and your family and your Dad are having to go through this. I lost my parents through dementia before their physical condition ended their suffering. It is very hard. The things that they said and did I knew were from their illness. Your father sounds like a wonderful man and if he could, I am sure he would not have you all go through any of this. Just give him those hugs, stay nearby, and continue showering him with love. We will pray for his comfort and peace and for your family's understanding and comfort as well. Mary

Unknown

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paul61

May God bring peace to your Dad, you, and your family
Deb,

I am so sorry you and your family have to go through this. I am sure your father would want you to honor the wishes that he stated when he was of sound mind.

I think the best thing you can all do for him now is to be there for him during the lucid moments and to work with hospice to help him remain calm during those times when the abnormal cells in his brain generate irrational thoughts.

I will continue to pray that, when the time is right, God wraps his loving arms around your Dad and brings him lovingly and gently into the light.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED

sandy1943

Hello Deb, My heart goes out
Hello Deb, My heart goes out to you and the family. I'm sure it is torture. Sometimes our desire to try just one more thing, gets in the way of our reasoning. From other post I've read, it is probably the mets to the brain that is causing his problems. Just remember all the things that were said and done during the good times. These are the memories that will stay with you.
Your comments do not come under the heading of " negativity". It is under the heading of " I'm hurting and need to talk" You know we are all here for you. We're hurting along with you today.
Sending hugs and prayers that God will hold ypu close and give you and your family the comfort you need,
Sandra

LivingFaith

sandy1943 said:

Hello Deb, My heart goes out
Hello Deb, My heart goes out to you and the family. I'm sure it is torture. Sometimes our desire to try just one more thing, gets in the way of our reasoning. From other post I've read, it is probably the mets to the brain that is causing his problems. Just remember all the things that were said and done during the good times. These are the memories that will stay with you.
Your comments do not come under the heading of " negativity". It is under the heading of " I'm hurting and need to talk" You know we are all here for you. We're hurting along with you today.
Sending hugs and prayers that God will hold ypu close and give you and your family the comfort you need,
Sandra

Thanks
Thank you for the kind words and prayers. It helps so much to feel the support of all of you. Sandy you are right when you said "I'm hurting and need to talk"

I've been praying so much for clarity of this part of the journey. I also needed to thank God for the EC journey. As hard as that sounds, I've been blessed in many ways these last few months. I got the chance to become very close, have deep meaningful words of love, with my father, as well as meeting some wonderful caring people along the way. Telling God what I have been thankful for has brought me some of the much needed peace. Maybe the "Thank You God" part was one of the missing pieces in my journey to peace and comfort?

Thank you EC Board Friends as well!

Deb

K_ann1015

LivingFaith said:

Thanks
Thank you for the kind words and prayers. It helps so much to feel the support of all of you. Sandy you are right when you said "I'm hurting and need to talk"

I've been praying so much for clarity of this part of the journey. I also needed to thank God for the EC journey. As hard as that sounds, I've been blessed in many ways these last few months. I got the chance to become very close, have deep meaningful words of love, with my father, as well as meeting some wonderful caring people along the way. Telling God what I have been thankful for has brought me some of the much needed peace. Maybe the "Thank You God" part was one of the missing pieces in my journey to peace and comfort?

Thank you EC Board Friends as well!

Deb

I love your post
Deb
I love your post.... it is (I think) a miracle that with so much pain, there are some rays of light. I think we all hold our family members closer and are quicker to acknowledge the source of all the good in our lives after going through cancer scares. It doesn't always make sense --esp to me---but I know God just wants us to confide and lean on him. He doesn't want us to suffer.

you may highlight for new comers to also search out the positive when possible--it is usually lurking where one least expects it! blessings to you both..

Kim

Tina Blondek

I Know What You Mean
Hello Deb and family
When I read "If we only knew", it totally hit home for me. Mom and I have said that about my dad many times since his passing. I agree, enough is enough. Bring him home, keep him comfortable, give him the blessing he needs to go to his "new home." I am so happy you have hospice with you. That nurse is 100% correct. Let his death be quiet and peaceful. Hospice will help you all through this difficult time. We will be thinking of you and praying for you. Keep us up to date.
Love and Hugs,
Tina in VA