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Emotionally and physically spent

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

Not even sure where to start here. This has been a week from He**!!!!!!!!!

My dad has been deteriating so quickly it's making my head spin. He started getting numbness and weakness on his right side. I've noticed it was getting worse for about two weeks. I finally got him to mention it to his hospice nurse...

She did a "field test" a week ago yesterday... On Monday he started slurring his words..
~ points toward stroke symptoms right??~
I was watching him closely. He was becoming more tired, agitated. He kept blaming it on not working.

Fast forward to yesterday his hospice nurse came in as she does weekly. I made my concerns known. She then called his oncologist that has been treating him for his stomach cancer. He said to take him to the ER to have a ct ran to check for a stroke... Little did I know that would be the lesser of all evils in my opinion.

After sitting in the ER waiting room for about 4 hours we finally get taken back *they did put him in the pediatric ER to prevent him from being sick while waiting to get in a room. They did the ct scan and blood work monitored him..ect.

Many "emergent cases" came through the er so we were shuffled room to room waiting and waiting.. 8 hours into our wait the doctor finally came in, told us he was sorry that the ct film got put in the "nonemergent" pile that would be read by neuro the next morning. But Good News NO stroke... So we were elated for about 2.4 seconds. until we were told he has mets to the brain.. I still haven't recovered...being 24 hours later.. I walked out to the parking lot sat on the concrete and cried...

So now after everything else we've been through here we are going into Radiation to treat dad "asymptomatically" Im really wondering if it's all worth it anymore. Prognosis very grim.

I am so beside myself the strongest man I've ever known is nothing but a shell of who he was. Now he can't even raise his own head. I am doing his feedings every 6 hours Jtube. Giving him steroids *for the brain swelling i forgot to mention* I brought him back home this evening. Yesterday he was doing things for himself..

I know it's a matter of time but is it even worth trying anymore..radiation i've heard so many bad things about it. The hospice nurse is even telling me that we will be lucky for him to last through the radiation 10 sessions he goes M-F so two weeks.

I just don't even know what to think.

Anyone have any suggestions Please Help!!!

grandmafay's picture
grandmafay
Posts: 1638
Joined: Aug 2009

I'm sorry you are having so many tough days. The decision to continue treatment or not is your father's to make. That is probably the really tough thing. You don't want to discourage him, but you hate seeing him as he is today. Continue to take things a day at a time or even sometimes a minute at a time. If you haven't already, have a gentle talk with him letting him know that you will accept his decisions. Sometimes we just need to give them permission to go. I know how hard that is. I told my husband that he could go whenever he was ready, and that I would be alright. Hang in there. Fay

ketziah35
Posts: 1154
Joined: Jun 2010

I just wanted to let you know that I was praying for you and thinkng of how you were doiing.

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

I just wanted to let you know that I am thinking of you. I have been in the same boat as you with my dad. I agree, it is your dad's decision to stop or keep going with treatment. I also agree that you have to let him know you are ok with his decision, no matter what it is. He needs the peace about this. We all know as daughters, caregivers when enough is enough, but the patient, or victim of cancer has to feel the same way we do. You are doing a great job. You are doing the best you can. Your dad knows this in his heart. Look at his quality of life, is it worth the quanity of days, months, years he is going through. My dad did not want to be a burden, even though we told him he wasn't. He did not want to spend his days in a recliner, suffering in pain, being on pain meds that made him out of it. You are not alone, we are always here for you, Keep in touch when you can.
Tina in Va

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

I'm just wondering if you have any experience with brain mets whatsoever. I am wanting to know what to expect and seems like the doctors and even hospice aren't willing to go there. I know in the last week My life has changed drastically. I've been by his side 24/7... I Had to pull myself away tonight for about an hour dyed my hair just to get a minute to myself.

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Hi Angel
No brain mets, but liver mets. As for what to expect? In our case it was a long 3 month decline. My dad lived on morphine for pain relief, he had bad side effects from it. I feel your dad will have a similar experience. You will all know when enough is enough. I am sorry to hear that hospice will not help you with regards to your dad's brain mets. Glad you got to dye your hair! I know how crappy I feel when my hair does not look good. You have to give yourself some me time. I was not there the night my dad passed, I left him at 430 and he passed at 850. I think he planned it that way. When I got there he looked so peaceful, he even had a smile on his face. He had suffered for weeks with badly swollen ankles and legs, he hated it. As soon as he passed, his ankles and legs went back to normal size. This is why he was smiling, I just know it! I am praying for you all daily. Tell your dad it is his choice, let him do what he wants to do. This is his disease, not ours. Keep in touch. Many hugs to you all.
Tina in Va

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Faithful_Angel,
The only thing I can add is, do you have, or does someone have, his power of attorney and medical power of attorney in order, and perhaps a DNR if that is his wishes?
If mets to the brain, and he is not going to be "all there" as hard as that is to even SAY, someone, you if that's the plan, which is what the paperwork is for, has to be there to step up and make those decisions to continue on with treatment and radiation, or not.
I agree, the choice is your dad's to make, whether to continue treatment and what is and is not worth it, but at some point, I had to face the fact that I may NOT be the right one to make the calls anymore, as I may not be in my right mind. Therefore, I have my wife and she has medical power of attorney over me, as that is a realistic need to have in place.
Just thought I would add this. It brings ME a great deal of peace that if I go to that place where I am no longer able to make sane decisions for myself, that she knows my wishes, feels the same as I do about living on a machine and quality of life, and can make those decisions for me, when it's time. Only then. I hope this might help.
-Eric

KateNTx
Posts: 39
Joined: May 2011

It's almost fitting that we are at the end together. I'm with you.

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

Yes Eric,

We have done much planning and I have several copies of his DNR...with me at all times. And I am also his POA... This is the most difficult time in my life but with the moments I have with my dad we do talk alot. I know his wishes and they are being upheld. At the moment he's not doing as well mentally as I'd like he's seems to be backsliding and now fighting for quantity vs. quality. This is wieghing heavily on my heart but everyone deals with this differently. I can't say what i would be like if it was me. So I am doing the things that I can to be the supportive and loving daughter.

I know his final wishes. Up through the point of having him cremated, where that will be done, and what he wants done with his ashes.

He's definately taking that final journey even if he doesn't want to accept it one of us has to.

Much lovexxxx
Angel

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