| | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I am the POA and Health Care Surrogate to a long time client. She will be 96 in Aug and has zero family and only one friend who is 86 herself. First part of May she broke her hip and now has pneumonia, congestive hearth failure and other problems as well. She was totally dependent and lived alone before she broke her hip. Now she is totally bed dependent; can't do anything herself and I even not only have to cut her chicken up (that was her favorite) but I have to mostly put the food on her spoon and make sure it gets into her mouth. I argue everyday with her nurses and doctors just about everything. About her hydration; about her calories and weight loss; about her meals; about her trouble breathing and expelling lung stuff; about her care. They just don't seem to be as concerned as I am and this is considered to be a very good hospital. Every day I see her slip a little further away and I just know THAT phone call is coming. How can all this be happening so fast just because she broke her hip. I just hope I'm not the last to die in my family.
Sorry to vent but this is tough to deal with.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | It is tough to deal with and sorry you are going thru it. No easy answers....she's 96 and breaking a hip is a big deal at that age...then there's the bed dependence which effects...well, you know all this. Hang in there. It's a tough job and you're a good person to take this on.
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Wow David - that is a lot to take on. Good for you stepping up and being her advocate. Even the "BEST" hospitals don't always have the best nursing care. My mom was in Johns Hopkins a few years ago to have the "whipple" surgery for pancreatic cancer. One of us stayed with her round the clock due to terrible nursing care. Her surgeon was #1 but the rest of her care, not so much.
I work in a hospital and I won't even give you the statistics as to how many elderly start a downward decline that they never recover from due to a broken hip. Hang in there!
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Just got back from the hospital and after talking to her docs and seeing her laying there every muscle struggling for every breath while I guess sound asleep, I finally gave into their recommendation to DNR, which if you have ever had to do this it means "do not resuscitate", do not do chess compressions, do not shock, basically let her life come to the end. No one should ever have to make that decision.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | David,
your compasion and strenghth are amazing.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | David, I think we all should make that decision but for ourselves in our health-care proxies or living wills. Takes the burden off of our care-takers and families.
Kudos to you for bearing this burden for another.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Hard indeed David. I watched my Dad slip away after signing his DNR and it was very hard even though I was sure that it was what he wanted.
Please everyone...do get that Living Will and Health Proxy signed to help make those who care about you know your wishes.
Sorry David for this most difficult time.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | David, you are very kind to be helping your former client. Everybody out there needs to have someone in their corner advocating for them in times of need. What a selfless gesture. That decision was very humane. The poor woman has lived a long life and this must have taken too much out of her. Hope she gets the care every person should be having. She is lucky to have you help her. You have done the right thing with such a terrible burden to be placed on yoru shoulders.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | David - My heart goes out to you! It's been a while since I've been on this forum but I remember how compassionate and caring you've always been. Your experience was so similar to my son's and your posts and updates and the courage and compassion you showed everyone were always so uplifting. Your long time client is truly a fortunate lady to have such a caring friend watching out for her. Take time to care for you, too!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Since July 2nd where I gave the DNR approval she perked up for a few days. I even brought her High School senior class yearbook, circa 1937 (Jim, maybe you went to school with Margaret. lol) to the hospital and we looked at pictures and she told me all sorts of detailed stories. She can't remember if she ate breakfast but she can go back 73 years with ease!
She still wasn't eating enough and I finally convinced her PCP to install a nose tube which she pulled out the first night just like I did. Then suddenly she took a huge turn for the worse. Required forced oxygen and fell into a almost coma like sleep. I then had to approve removing EVERYTHING except her oxygen and was convinced that we let her go peacefully. I was told Sat it would just be a matter of hours and she's still hanging in there as of this am. Now I feel that I am starving her to death but all the docs say this is best for her. This sucks!
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2009 Posts: 88 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2009 Posts: 88 | You're right David this type of care-giving, signing DNR's, and letting them go is not fun. I have been caregiver to my husband's grandmother and what you are experiencing is exactly what I went through. I was also close to my father-in-law when he went from Alzheimers. It really SUCKS all the way. So sorry you have to go through it but I'm so glad you as the someone stepped in to do it. All these individuals without someone need help like you. Some of what she could be experiencing and we went through this is her body actually may be shutting down little by little, but in real life it happens quickly within a few days. They become disoriented do to the body not eliminating the waste and such. True to what the doctors are saying there isn't much you can do except wait for them. I hated this end of things and could handle all the rest. God bless you for who and what you are and do for everyone.
Bonnie
CG to daughter Brandy age 31 initial dx 10/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Margaret J White, 95 and 11 months, passed peacefully this am at 5:45.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | David, Im sorry for your loss. You are a very good hearted person to have helped Margaret in her final days. May she now rest in peace.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | David,
What a wonderful and caring man you are. Margaret was fortunate to have you as her friend. She is another Guardian Angel watching over you now.
Hugs,
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | What a kind person you are David. People like you are hard to find. Like Shelley said, Margaret is your Guardian Angel, now and that should make you smile.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Feb 2009 Posts: 88 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2009 Posts: 88 | May God bless both Margaret and you also David for your kindness and help in Margaret's last days. May she rest in peace in Jesus loving arms.
Bonnie
CG to daughter Brandy age 31 initial dx 10/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | David - You are an Angel here on earth for all the care and compassion you've always given to others. I'm sure Margaret is at peace and lovingly watching over you now. God bless you.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | David,
I'm very sorry that your client...friend has passed away. She was an exceptionally lucky lady to have you there to watch over her and make the hard decisions that you made. I'm sure she so enjoyed going through her yearbook and telling you those stories. Funny how the memory works, isn't it! You, thankfully, did what we would all want someone to do for us - you treated her like you would want to be treated. Wouldn't the world be a wonderful place if we all did that. Sorry for your loss but I'm sure she is peacefully watching over you now. Take care.
Nancy T
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
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