Near The End?

I posted yesterday that I wished my Dad would move in with me. He had his 2nd ressection done in April after we learned of regrowth this past Feb. June 6 will mark 1 year ago when his journey started.

Anyways, my dad was going to have a 2nd dose of radiation, they felt he was strong enough and he did really well the first time. It was suppose to start yesterday, but he starting declining this week. Major right side weakness. So we took him in for a blood count today....and they did a CT scan...he couldn't even walk...this is the first time we needed a wheel chair. The poor guy! I feel so bad, he's very aware of the changes happening and unable to speak at all. I literally had to help him to the bathroom and to get dressed today. This entire time he's been able to ALL of this on his own....but things have changed.

The CT Scan revealed so much swelling on his left side that it's pushing over to his right side...the normal brain. He can't have radiation with a brain swell like this. He has opted out of any oral chemo or any chemo for that matter.

Today we talked about Pallative Care...possibly hospice?  They wanted to admit him today to Pallative care floor...and I refused and took him home. Home..to his house, where he wants to be.

What am I thinking? I can't be a 24/7 caregiver and I'm not sure anyone in our family can. But I just felt so bad for him and I couldn't dare put him in the hospital to die. We were told things could go really bad for him this weekend...but it also may get better with the upped dose of steroid. I am hoping that works and he at least gets his strength to walk.

I just don't know...the doctor said we are coming to the end of this journey and those words have just crushed my heart of any hope. How in the world do I stay postive? He is not living a quality life that he has stated...and it's obvious he's not getting any better...maybe a little...but not the quality I know he's hoping for.

It's just so hard. I am having a social worker call me to set up visiting nurse etc for him. I'm going to try my hardest to try and keep him at home...I wish he'd come to my house though...but I keep thinking how this beastly cancer has taken so much from him this year, his job, his ability to speak, play his guitar in his band and belt out the Elvis Tunes that he has sung since I was a little girl. He can't go fishing or even go outside to his porch and watch the sunset. How can I take him out of his home...it's all he has left.

Thanks for listening...I pray for all of you beating this disease, the people who are just starting, the ones in the middle and those of us near the end. I also send major hugs to all who have already lost.

Jill

Perhaps you should look into getting a power of attorney for his medical situations  - that would enable you to take your dad wherever you think he should be (including your house). It's practically impossible to manage things from far away for someone in your dad's condition.

I do have Power of Attorney for Healthcare for my Dad. But making him come to my house  may just as well be putting him in Pallative care at the hospital. Plus I have two children that are 8 and 11...I'm not sure they need to be around this environment either. No matter what decision that is made, it's going to be hard. There is no good answer when you are at this point. But thanks for reminding me that I have that paper, I didn't realize I could use that to get him to my home.

Thanks,

Jill

Hospice can be very helpful in this situation, making regular house calls for at home care. If and when the situation calls for it, they can make the transition to a hospice location for the remainder of palliative care. Hospice is very different from a hospital, but either would likely be psychologically difficult for your father at first. Most people I know who have experienced hospice were very pleased with the environment. Your doctor should be able to coordinate with hospice to start at home care and most people find that insurance covers all the costs. Things like walkers and other equipment are often provided for free. Are the doctors attempting to control the swelling with steroids? Steroids can make a dramatic difference to symptoms such as these and there is no reason for your father to needlessly suffer. Maybe a dose adjustment would help? All the best to you and your father.

Jill I'm not help here, but I understand your heart ache. Your dad sounds like my brother- remaining on his own in his home is so important to him also. BUT - with two small kids you must be realistic. As suggested - get on board with Hospice - they will be an amazing help.

I dread the day when I have to make this decision and your story is another one of the heartbreaking messages that are so often posted here. Thank God for this community of support. They will guide you and help you sort this out.

Hugs to you and your family.

Eileen

Jil,

I am so very sorry to hear about your Dad.  You are faced with horrible decisions and I truly wish there was some way to make things easier.  I agree that hospice could really help you at this point.  Please keep us informed and remember  you have friends here.

God Bless you all.

Connie

Follow your heart, you know what is right to do for you and your father deep down inside. We only get to do this once. I want my Mom (lung and stomach cancer stage IV) to live whatever way she wants while she is here, I want her to die in her home if that is her choice. It will be hard for me and my siblings (and kids) but I have alot more time than she does. That is kinda how I have to do it. My dad died last August, Mom used respite through hospice because she was so tired. They cared for him in the hospital while she rested. Up until then he had been at home. It was gonna be a day or two. He passed away two hours after she left the hospital. He died in the hospital without her. It really put her in emotional termoil.

I don't want regrets like she has. Maybe I'll have to change my mind when it gets bad for her (and me). I'm gonna try my best to do what she wishes. I am scared and honored to be a part of Moms journey. I will pray for you and your Father. What a lucky man to have a daughter so full of love. Take care of yourself as well, Jilby.

Maggie 

 

Jill:

 

Maybe if your Dad's insurance will pay he can have an aide stay with him. Some insurances offer different coverage for the hours they will cover. I had my husband home for 2-1/2 months. I had to work but dropped to part time so I had the aide in the morning and if she stayed I paid her the additional amount. I came home in the early afternoon so he was never alone. When the Hospice Nurse recommended he would have to be admitted I only agreed if I was able to stay. They provided me with a cot and bedding.

I wish you the best, and God watch over you all.

Best regards

Hi there;  how  are  you  today: i  hope  all  is  going  okay  we  are  here  for  you  God  bless

            FAIRY  DUST

Jill,  I'm practically in the same boat as you except with my mom who now lives in my home with my husband & I and 6 & 9 year-old!  It is so hard & some days I barely have strength to do anything or care about anything (like today!).  Whatever help you can get, look into it - whether it be hospice, home health, private agency aids.  Anything to help you.  Steroids could turn him right around - I've seen it in my mom.  Just 2 wks ago after Gamma Knife, she could not walk or feed herself with her right-side shaking so bad (she looked like a Parkinson's patient).  I had my old baby monitor in her room for 3 nights in case she needed anything - I was totally exhausted.  My poor 9-year old started crying in school for no apparent reason (highly unusual for her). This disease is soooo evil!  I received pieces of advice from others who have taken care of their parents & the one piece I hold onto is "no regrets".  I know I am doing everything within my power to help so when the day comes & mom passes on, I will NOT have one shred of "what if" or "should have"!  Whatever your comfort level is with your own personal situation, go with it the best you can & you won't have regrets either!  And most importantly, you are NOT alone! :0) Nikki