Dad's in a nursing home....how do you handle the guilt?

johannabubela · Experienced user Joined: 11 Jan 2009 Posts: 67

His stage IV rectal cancer is progressing, despite the aggressive chemotherapy. We'll find out what more we can do this week, but I think anything at this point will be palliative.

After surgery last week to try to remove as much metastatic cancer from his bladder as they could, he is now in a nursing home as I cannot care for him as he needs at home. I put him in one that is close to his doctors and the hospital, but it is a little way from me (about 20 miles). I am struggling with the guilt of visting him or not visiting him daily. When he was living on his own, he NEVER came to our house even though he came to town every day, so I don't think he feels the need to see us (and yes this was after his cancer diagnosis). But now that he's in the nursing home he expects me to go see him every day, and lays a good guilt trip. That's very hard for me time wise - but a part of me feels like I need to make the time, even though it will just about put me in the crazy house. To top it off, when I visit him, he fusses about me not staying long enough, even if I stay 2 hours - that's 3 hours out of my day, and I work full time and have a family to care for!

I've made sure he has a cell phone so that we can talk on the phone and I can check on him or he can call me if he needs something.

Today I didn't go see him because I am sick and have a fever. His white cell count is low, so I don't think it would be wise to go see him, plus I feel so terrible. But when i talked to him on the phone he didn't seem to care or understand that I am sick myself today. How do you deal with the guilt - guilt for not visiting every day, or guilt for not taking care of your own needs and family to take care of his?

This guilt is eating me up - any adivce?

Johanna
_________________
Daddy's story:
12/08 - colonoscopy, mass biopsy neg
12/29/08 - surgery, very adv rectal cancer, 13 lymph nodes, 12 pos, perm colostomy
3/16/09 - Began FolFox
5/16/09 - Changed to FolFiri
9/23/09 - final round of FolFiri
10/4/09 - arthritis in spine
10/23/09 - mets to bladder, worsening in liver and pelvis.

star · Senior User Joined: 02 Sep 2006 Posts: 232 Location: Ohio

Hi, So sorry to hear what you are going through, you have to remind your self its not your fault that your father has cancer, you have to keep on doing what is the best of a terrible ordeal and not feel any guilt.. You also got to remind your self cancer can do a lot of things to a person brain,.. Just do what you can as you said you have other responsiblilies and you have to be shared around..
I think you are doing a great job under tough situation... be kind t yourself and put it all in Gods hands... and look to him for guidance, peace, and comfort... he loves you, your family and your father, and he knows the situation.. LET GO AND LET GOD...

BEST WISHES TO YOU .....AND KEEP UP YOUR STRENGHT...

GOD BLESS YOU ..................ROB

johannabubela · Experienced user Joined: 11 Jan 2009 Posts: 67

Thanks so much for the reply, Star....I will try very hard to keep your words of wisdom in my mind.

I never had any idea how hard this disease is on everyone involved, not just the cancer patient.

Thanks for your advice!

Johanna
_________________
Daddy's story:
12/08 - colonoscopy, mass biopsy neg
12/29/08 - surgery, very adv rectal cancer, 13 lymph nodes, 12 pos, perm colostomy
3/16/09 - Began FolFox
5/16/09 - Changed to FolFiri
9/23/09 - final round of FolFiri
10/4/09 - arthritis in spine
10/23/09 - mets to bladder, worsening in liver and pelvis.

mike281 · New User Joined: 04 Nov 2009 Posts: 1 Location: UK

Hi Johanna,

I'm very sorry to hear about your Dad and I can sympathize with your situation. I had a terrible row with my Father over the way he was treating my mother in the last few weeks of her life and it made me stay away from their house for all but the last week.

On the last night I cradled her all night in my arms while she cried with the pain. Even though we called out our doctor for morphine shots it was taking little effect by then. That was 9 years ago and I still bitterly regret not spending more time with her but you just can't turn back the clock and correct your mistakes. I wish I could.

Anyone in your situation will go through an enormous range of emotions and if you are a loving and caring person, as I'm sure you are, there is always more than a little soul searching. You can only do as best as you can within your limitations. Your Dad is lucky to have you to visit him. Many don't. So please try not to beat yourself up when you are doing your best for a loved one.

If I can help in any way or you just need to chat I am here for you.

Best wishes - Mike Hargreaves

REB

I understand how you feel. My mother is in the advance stages of Alzheimer's. It is hard for me to see her like that. The woman I knew as my mother is gone and just a shell is left. I have to make myself go see her because it is so hard to see her that way. She doesn't even know who I am any more. I feel guilty that I have to force myself to go see her.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor & Temporary Colostomy
11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil), leucovorin & oxaliplatin. Also Avastin
04-09-08 Finished Chemo, 04-28-08 Colostomy Reversal
06-02-09 1 Tumor on outside of colon & 2 in the adipose tissue - same cancer- SUV 5
06-23-09 FOLFIRI and ERBITUX chemo.
08-18-09 Tumors have shrunk. SUV 1
10-26-09 Tumors gone.
11-25-09 Finish FOLFIRI - Jan 2011 Finish ERBITUX?
Age Diagnosed 40. Current Age:42

johannabubela · Experienced user Joined: 11 Jan 2009 Posts: 67

REB, I can understand so totally. It's the guilt that is the worst. And now, he's really getting confused, so he's even more unlike himself, so that makes it worse. The normal him is pretty grouchy and demanding, so it's easier to be disgruntled. Now he's more childlike, so it tugs even more at the heartstrings. My greatest fear is that I will get Alzheimer's or something similar and be a huge burden to my daughter and husband.

The doctors have taken him off the morphine, as it seems he is not in that much pain. Hopefully that will fix some of the confusion and lethargy, but time will tell.

Thank you everyone for your kind words. I pray for you all, too!

Big hugs!

Johanna
_________________
Daddy's story:
12/08 - colonoscopy, mass biopsy neg
12/29/08 - surgery, very adv rectal cancer, 13 lymph nodes, 12 pos, perm colostomy
3/16/09 - Began FolFox
5/16/09 - Changed to FolFiri
9/23/09 - final round of FolFiri
10/4/09 - arthritis in spine
10/23/09 - mets to bladder, worsening in liver and pelvis.

johannabubela · Experienced user Joined: 11 Jan 2009 Posts: 67

Mike, you're right. There is a long list of emotions we are all going through. And yes, you are right, there are a lot of people who don't get visited.

Thanks for the offer to vent - I'm sure I'll take you up on it at some point!

Have a great evening!

Johanna
_________________
Daddy's story:
12/08 - colonoscopy, mass biopsy neg
12/29/08 - surgery, very adv rectal cancer, 13 lymph nodes, 12 pos, perm colostomy
3/16/09 - Began FolFox
5/16/09 - Changed to FolFiri
9/23/09 - final round of FolFiri
10/4/09 - arthritis in spine
10/23/09 - mets to bladder, worsening in liver and pelvis.

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