#33163 01-30-2004 05:27 AM | Joined: Nov 2003 Posts: 59 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Nov 2003 Posts: 59 | Hello,
I don't know what else to do with myself right now and I need some guidance.
Joe's daughter,my sister in law Patti has been battling systemic lupus for 14 years.She has been hospitalized for the last 9 weeks.This hasn't been uncommon for her because of the degree of her illness.We received a call from the priest at the hospital early this morning that he had to give her the last rites because they couldn't get a blood pressure reading on her.Joe and my husband are at her beside now.They don't expect her to live the day.Although we were well aware that she was terminal,she wasn't anywhere near this.I'm at a loss to try to help Joe deal with this.
We've been so caught up dealing with his cancer and his horrible diagnosis that she has sort of taken a back seat in the last few months.He expressed to us his deep feelings of guilt this morning.How can I help him deal with all of this?Has anyone been through a similar situation?I feel guilty just being on the computer while they are sitting at her death bed,but there is isn't anyone to watch my children.Also,she has a 14 year old son,What can we do to help him??She has been ill since he can remember and he is aware of what would have eventually happened to her,but this came out of the blue.I thought they should have taken him to the hospital to say goodbye to her,but my mother in law who, has been caring for him deceided not to do it.She doesn't want him to watch her die.I think he's going to be very angry.
Can anyone give me insight??Thank you all again for listening to me ramble.I just don't what else to do.
Patty
Caretaker of Joe,10/03 malignant melanoma of the tongue.
50% tongue removed,left radical neck dissection.11/03.Recurrence
to jaw and neck and multiple mets to major organs 1/2004
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#33164 01-30-2004 06:15 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Patty
I really don't know what to say to you all... BUT don't any of you blame yourselves... Lupus is a constant war... I'm sure your sister-in-law would never think that you put Joe above her.. It's much more compliated than that and you know it.. Could you not all speak with someone from the church as a family you need help now.. on the ground support.. PLEASE e-mail me if you need to.. I have Lupus and am awaiting more laser surgery on my tongue.. I can only offer that and my prayers.. which are heartfelt for you all...
love and big hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#33165 01-30-2004 10:36 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Patty, I am so sorry to read your latest news. I think you may be right that her son will be angry if he doesn't get to say goodbye. But has anyone asked him what he wants? At 14, and especially after dealing with this all these years, I think he should be allowed to make the decision. It's not necessary for him to be there at the moment of death, but he should have a chance to see her briefly and say goodbye if that is what he wants. I'm so sorry. You have such a heavy load to bear right now. I wish I lived close enough to help you in some way. Please know that my thoughts are with you. Rainbows & hugs,  Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#33166 01-30-2004 10:44 AM | Joined: Nov 2003 Posts: 59 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2003 Posts: 59 | I just received the call from the hospital,my sister in law passed away @3:30pm.My nephew didn't get to the hospital in time.I'm glad that god was merciful and took her quickly.They said she was in great pain at the end,but she knew that her family was there.
Thank you Rosie and Helen for your responses.I wish I knew what else to say.
God Bless You All.
Caretaker of Joe,10/03 malignant melanoma of the tongue.
50% tongue removed,left radical neck dissection.11/03.Recurrence
to jaw and neck and multiple mets to major organs 1/2004
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#33167 01-30-2004 10:47 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Patty, I can't imagine the level of stress this puts on everyone, I am truly in sympathy for you all.
NOBODY should have guilt. You all need each other and guilt is not a worthwhile feeling. As for helping him deal with this, I don't believe you need do anything except be there as a loving family member. Certainly there isn't much that can be done about the grieving process except let it happen. I imagine Joe will see his own situation reflected in the process. Many would seek spiritual support at a time like this and people in the Church should be available if you ask.
I'll be thinking about all of you.
Take care
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#33168 01-30-2004 07:07 PM | Joined: Jan 2004 Posts: 134 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2004 Posts: 134 | Patty,
I am so sorry and send my condolences to you and your family. You all are in my prayers. I truly am sorry.
Please email me if I can do anything for you.
Stephany
Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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