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#195297 - 10/25/17 09:01 PM Needing Some Guidance  
Joined: Jun 2017
Posts: 4
lbarnette Offline
Member
lbarnette  Offline
Member

Joined: Jun 2017
Posts: 4
Maryland
Hello all, I am needing some guidance and support in trying to care for my mom, age 63, who lives in FL. First a little background...

This past June/July my mom was diagnosed with Stage 4 SCC and had a total glossectomy, pectoral chest muscle flap replacement of the tongue, lymph node removal in several spots on the right side of the neck and had a PEG tube placed. It was an extensive 7 weeks that she spent in the hospital and the in-hospital rehab facility. I live in Maryland and flew down to be with her for the surgery and the 1st month post-surgery. We went through a lot in that time and had some very dark days. I thought the rehab facility was really a blessing with its care and attention to everything she had going on. (My mother's insurance does not cover a lot as we are finding out now that she is home and I feel lucky to have had that opportunity for her.) Since mid-August, I have been at home with my 2 young kids and doing all that I can virtually to help her. My husband's job makes him travel a lot so I am trying to do the best via Skype, text messages, emails, and phone calls but I know it's not the same as being there with her. I wish that I could have her move here but she has state funded insurance and moving would take her away from what resources she does have and all of her doctors. All of our family is spread out across the eastern seaboard. There is no family nearby and my mom doesn't have many friends. She lives with my stepdad but their relationship is less than ideal to put it nicely.

My mom has told me several times that if she knew what her life would be like now...she would have chosen differently. The inability to talk and have people understand her really takes its toll on her. The fact that she has a PEG tube and doesn't eat like she used to also sends her into some dark moments. We have laughed, cried, yelled and discussed so many things yet in her core she isn't able to accept what has happened to her much less make strides to heal. She also tells me she doesn't remember anything from the hospital so the time I was down there is very blurry to her.

My mom used to deal with life by drinking. And she did so right up to the morning of her surgery. Without the alcohol, she is now so much more aware and present in her life but....there is so much she never saw because she was under the influence so long. She now wants to change so many things about her life but doesn't feel like she has any power or control. She is so angry at my stepdad because he doesn't understand her affected speech. She is bothered by EVERYTHING that he does and he is the only person that is there to assist.

I have called her doctors and insurance company to ensure that her health questions & concerns are addressed, I have helped in dealing with issues as they come up, helped her create a list of questions for her doctors appointments, sat with her on the phone and Skype for countless hours during daily tasks, hygiene etc. I am trying to do everything I can to support her but at the end of the day...it doesn't feel like it enough. She gets disappointed if I have to get off Skype or do something with the kids. We are spending 4-6 hours some days on Skype and I am trying to do all that I can for her yet my family here too.

What am I missing? What could I be doing better? What do I continue to say? What shouldn't I say?

I have come from the 'we are lucky to be alive', 'I feel so blessed that you are here', 'some people can't talk at all so I am thankful you have some communication', 'it's ok to feel angry', 'you have an army behind you'. I have even tried to get her to post on this site so that she could hear others' stories. If someone's story isn't exactly like hers, she cries. She is alone and angry and feels like there is no one there for her.

When it comes down to it, I am lost on how to get help her arrive to any level of acceptance.


Daughter of mom who had Stage 4 SCC, age 63
Total glossectomy 07/07/17 w/ bilateral ressection, required tracheotomy, removal of lymph nodes in neck & permanent feeding tube
Mom passed away 1/2/18


#195298 - 10/25/17 11:45 PM Re: Needing Some Guidance [Re: lbarnette]  
Joined: Jun 2007
Posts: 9,934
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,934
PA
WOW! You certainly have your hands full. Thank you for taking the time to explain everything in such detail. It may not seem important but when asking questions we need to know the whole story to be able to provide effective replies.

From an outsiders view, I see many problems going on. First, you are stuck in the middle and your mother has come to depend on you. Ive seen many children tend to their parents affairs when the parent becomes seriously ill. Unless the parent has ongoing serious medical issues, usually the child takes care of the parents business for only a couple weeks, maybe months but not forever. Her husband should be the one picking up the slack and taking care of all these things. In my opinion, since he lives there he should be her caregiver which includes all the billing and insurance tasks as well.

I think your mother needs a therapist or other mental health professional. Its nothing to be ashamed of! Many cancer patients need a professional to help them get past whats happened to them. Many facilities offer a special person to help cancer patients. She would also benefit from interacting with other cancer patients in a support group. I kinda expect to hear your mother will refuse due to her speech. That is NOT a reason to isolate yourself from society!!!. Its just like the stages of grief, dealing with a cancer diagnosis and all it entails takes its toll and eventually the patient will find they can accept whats happened. Depression is quite common with OC patients and their caregivers too. Its sounds like your mother is depressed and very lonely which can be a terrible thing for the elderly. Many patients get angry and lash out at the closest person. Their anger is really at themselves for getting sick which usually isnt anything anyone has done purposely, people just get sick. Its unfair to you for her to get disappointed when you must attend to your own life and children. There's only so much of you to go around. Since your mother can Skype then she should be able to use an app called Speak It. She can type and it will say whatever she types. This can be used to make phone calls. I had a close friend who used it successfully for years and loved it. I knew her so well often I knew what she was going to say before she finished typing and clicked for the app to say the words. Im sure your mother could easily use this to start doing more of her own business. It would also help her to communicate better with her husband. Sometimes people need to step up and make difficult decisions. If your mother is really that miserable where she is then maybe she would be happier making alternative life choices. Somehow she needs to stand on her own two feet and stop trying to guilt you into doing more and more for her. As an adult with your own family its unfair to expect so much of your time every day. Ive always thought... everyone needs a reason to get up in the morning. Maybe its time for you to not be quite so available and let your mother rediscover what makes her happy and whats her reason to get up in the morning.

Feeling sorry for yourself can be debilitating and make patients miserable. Its completely normal for patients to focus on all the things that are now different and things that make her life harder. This can easily be a source of negativity that spreads and can bring even the sunniest person down. Im sure your mother has many things she can still do very well. Eating is a big social event in most peoples lives. But, not everyone is able to eat normally. I know many OC survivors who live dependent upon a feeding tube for all of their intake. This is a huge hurdle to overcome. It takes lots of time and patients must always pay attention to how much they take in. Patients also often have different issues with their feeding tubes. Many clog or cause nausea which are things that can usually be easily fixed. This is another reason why its so important for her to meet other patients, especially people who have feeding tubes. That could be something they can bond over. I hope that one day your mother will be able to figure out something positive she can do to discover a new routine.

Over the years Ive had plenty of my own struggles. I use a feeding tube for the majority of my daily intake so I know partly how your mother feels about not being able to eat like she used to. One thing Ive learned that has helped me tremendously... by helping others it also helps me. I never would have believed it if I hadnt experienced it myself. The Oral Cancer Foundation's founder Brian Hill did something for me that at the time I didnt quite understand. Years later, I can see by Brian asking me to help him monitor this online support forum, he actually was giving me my life back. When I got sick for the third time in 3 years and required a life altering surgery to remove half of my jaw, my chances of survival were slim. I credit Brian and the kind members of this forum in helping me to see I couldnt just quit until I had at least attempted to survive. I went thru a heck of a hard time and suffered more than I thought anyone could endure. It took me a very long time to get back on my feet. I was no longer able to do my former profession, I wasnt physically able to do much of anything I had done before. I lost my reason to get up in the morning. But one thing I still did every single day... I always checked the forum and said hello to new members. After being home alone for almost a year recovering, I didnt go out much anymore. Being disfigured from having my jaw removed, complications from the surgery, and many after effects including mobility issues kept me close to home. Plus everywhere I went people stared and whispered behind my back. Brian showed me such kindness and compassion by asking me for a favor, to help him with this forum. After helping thousands of people for years, Brian knew all too well that by helping others it also helped him to mentally better manage his side effects. If your mother is well enough maybe she could volunteer to help other cancer patients. Im also a volunteer driver for the American Cancer Society (when I have time) driving cancer patients to their appointments. Thats a great way to help her get back in touch with others. To me, its always a good feeling when I know Ive helped someone who needed a hand, provided info, or let someone in despair lean on me.

I hope some of these ideas can help your mom to adjust to her "new normal".



Christine
SCC 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 smile
#195410 - 11/26/17 10:36 AM Re: Needing Some Guidance [Re: lbarnette]  
Joined: Nov 2017
Posts: 19
trisha Offline
Member
trisha  Offline
Member

Joined: Nov 2017
Posts: 19
I don't know what you could do better. I know as my husband's caregiver I feel the same way. What can I do? The hardest thing of all is realizing maybe we can't do anything except be there with love and support.


trisha baker
#195412 - 11/26/17 02:04 PM Re: Needing Some Guidance [Re: lbarnette]  
Joined: Oct 2012
Posts: 931
gmcraft Online sad
"OCF Canuck"
gmcraft  Online Sad
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 931
Toronto, Canada
Trisha,

I was my husband’s caregiver for three and a half years and I would like to share my experience with you. I was his “case manager” throughout. Yes, I certainly made his intake of water and feeding my business. I kept records of everything. It included a list of medications he was taking, the dosage, the problem it was prescribed for and the dose. Whenever he had to go in for a procedure, I printed out the list and handed it to the nurses. It made things so much simpler for them and for me. Because my husband took his medication through a feeding tube, I always checked with the pharmacist that any new medication he was prescribed could be crushed or could be tube-fed. That, I learned was important because if we were not careful, John could overdose on some of the meds because of the way it was administered. I learned about possible side effects of meds and watched out for those. For example, when he was hospitalized for pneumonia, he had symptoms of serotonin syndrome and I was able to discuss the case with the hospital pharmacist. When John was going through radiation, I made sure he had his saline soaks several times a day. I kept track of his blood pressure and temperature daily and kept a record for the visiting nurse. I discussed with his palliative doctor about why John couldn’t be put on hydromorphone (because he had hallucinations when he was given that in hospital). I talked to his friends about how we could better socialize since John could not eat or drink but would still like to see his friends.

Sometimes doctors assume that the patients would be able to tell them everything but that’s not always true. My husband was so muddled sometimes that he would not be able to talk about the doses of his meds accurately, for example. He could not always advocate for himself because he was physically so weak or he might be embarrassed to admit to something, like feeling dizzy at the moment he was talking to the doctor. I learned what I needed to learn by following this forum and by talking to all the professionals. I made sure I took notes and wrote down questions for doctors ahead of time. At doctor’s visits, I would tell the doctor that I had a certain number of questions ( three, or four, or five) so that they would know not to sprint out of the office becfore I had finished.

There’s a lot a caregiver can do. It helped me greatly in coming to terms with John’s illness. I was playing a very active role and that was how I stayed even-keeled. It is something you can do too, not only for your husband but for yourself.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
#195771 - 02/27/18 09:47 PM Re: Needing Some Guidance [Re: lbarnette]  
Joined: Jun 2017
Posts: 4
lbarnette Offline
Member
lbarnette  Offline
Member

Joined: Jun 2017
Posts: 4
Maryland
I wanted to say thank you all for responding to my post. Unfortunately, my mom's cancer returned with a vengeance in early December. Not only was it back on the right side of her neck but it was on the left side and throat as well. This was after a clear scan just five weeks prior. On December 19th, my mom went into the hospital because she felt like she was choking and they discovered a new tumor was obstructing her airway. If she hadn't had a trach, she would have suffocated. Mom stayed in the hospital and went through her first round of chemo in the days immediately after that and while that shrunk the tumors, her body just couldn't get back any strength. Her white blood cell count was terrifyingly low, she was developing pneumonia, she had constant diarrhea as her body wouldn't absorb food, she was nauseous and in immense pain as she always was. I went back down to FL and within 24 hours of getting there, the oncologist gave us the news that Mom needed to decide how she wanted to live out her last days or weeks. Mom opted to go to Hospice and so we arrived there on NYE day at 3:30 p.m. I was by her side each day and on January 2, 2018 my mom passed away. Things happened quickly (at least that's how it felt to me.)

I am thankful that I had those last 5 days with her. I was able to get my brother and dad to see her one last time so that they could have closure. I kept my aunt and uncle informed. I did all that I could to give her comfort and peace and everyone around her. I was able to hug and kiss her. I was able to tell her the things that I hoped she knew but needed to hear. She was tired and done with the disease and while I understood it, it was the most difficult thing I have ever witnessed.

I am so glad that I took the time and effort to be stressed out for her. I know that may sound weird, but it matters. The things that you all are doing for yourself or your loved one matters. It is worth something and while it can seem daunting and tiring, your loved one is appreciative. To have someone in the world helping you, it will always matter regardless of the outcome.

Thank you for responding to my post. It meant a lot to know someone understood what my day was like. I wish you all the best in your journeys.

Sincerely,
Lisha


Daughter of mom who had Stage 4 SCC, age 63
Total glossectomy 07/07/17 w/ bilateral ressection, required tracheotomy, removal of lymph nodes in neck & permanent feeding tube
Mom passed away 1/2/18


#195772 - 02/28/18 02:28 AM Re: Needing Some Guidance [Re: lbarnette]  
Joined: Oct 2012
Posts: 931
gmcraft Online sad
"OCF Canuck"
gmcraft  Online Sad
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 931
Toronto, Canada
Dear Lisha,

I am really sorry for your loss. The final days of an oral cancer patient can be quite distressing to a caregiver. I’m sure it was a great comfort to your mother to hear you tell her how much you loved her and to be able to have the most important people in her life around her. She’s now free of the pain and the fear — I hope you can take comfort from that. The first year after my husband passed, I felt like I was living in a daze. It took time and some counseling for me to finally learn to live again. If you ever feel that the grief is too much for you, please don’t hesitate to seek help, after all, being a caregiver is a traumatic experience.

I hope you will keep in mind what a wonderful daughter you were to your mom. Wishing you all the very best!


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
#195773 - 02/28/18 03:10 AM Re: Needing Some Guidance [Re: lbarnette]  
Joined: Jun 2007
Posts: 9,934
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,934
PA
I am very sorry to read your post, Lisha! I know it wasnt easy for you to come back here and give us the sad news. I know your mother must have felt great comfort in having you there with her. It made a big difference having you close. I know its not easy dealing with everything when losing a parent. You've done everything you possibly could have done to help her which Im sure she greatly appreciated. Your mother was very lucky to have such a loving daughter.

May your mother rest in peace now that she is free from illness and pain. In time, let your memories of happier, healthier times with your mother bring you comfort.


Christine
SCC 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 smile
#195775 - 03/01/18 02:55 AM Re: Needing Some Guidance [Re: lbarnette]  
Joined: Jun 2017
Posts: 4
lbarnette Offline
Member
lbarnette  Offline
Member

Joined: Jun 2017
Posts: 4
Maryland
Thank you Gloria and Christine. I truly appreciate your words and support. Sending much love to you both in your journeys.


Daughter of mom who had Stage 4 SCC, age 63
Total glossectomy 07/07/17 w/ bilateral ressection, required tracheotomy, removal of lymph nodes in neck & permanent feeding tube
Mom passed away 1/2/18



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