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Joined: Jul 2003
Posts: 235
didier Offline OP
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Gold Member (200+ posts)

Joined: Jul 2003
Posts: 235
Thanks everyone. The reason I may sound a little rough around the edges at this point is because three of her doctors have contacted me and basically said that she really needs to be more responsible for herself. I realize there are many factors to recovery that are challenging -- both physically and emotionally.
For the longest time I coddled her and that clearly didn't help the situation. I let up on the reigns some time last year in an effort to get her to start living again. Shortly after treatment she was honestly doing quite well -- driving and working a bit. Then she stopped everything: driving, walking, working, keeping herself clean, taking care of her pets, etc. She was medicating herself and calling different doctors complaining of different ailments in order to get all sorts of meds -- including morphine. This wasn't a pretty picture. I finally got that under control with the help of some docs and by adapting my caregiving technique. I've toughened up, I've had to. I honestly belive that had I allowed her behavior to continue, and if I continued babying her, she would be in a much darker place. Perhaps I was overprotective and, as a result, I am partially responsible for some of her behavior. I don't know. Wo. Way off topic, but I felt the need to explain.


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
Joined: Dec 2003
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Dave,

Don't be too hard on yourself or your mom. Much of the stuff patients and caregivers go through after such a traumatic period is different in every situation and for every person. Just remember that you both did what you needed to do at the time. You were great in all you did and especially with both of you having to deal with your father's issues and ultimate passing. I remember well how tough things were for you.

I read some of my file at the doctor's office today looking for something and saw and the glorious remarks about how well I cared for my teeth and mouth and how horrible it would be to not follow through with repair work after radiation with big bolded letters saying "LIFE OR DEATH" and I was stunned when the insurance company said it was only cosmetic and they would not pay a penny. I fought for two years to cover the back teeth that were pulled out pre-treatment, even though it was only a few hundred bucks. I am now preparing for the battle to finish this last piece of business!

Hang in there, if you don't fight, they win without effort.

Greetings from me, by the way,

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Mar 2002
Posts: 1,140
Likes: 1
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Mar 2002
Posts: 1,140
Likes: 1
Didier, Ed is so right - you must not second-guess your actions. Having been caregiver for both my mom and dad too, there are certainly things I wish I had done differently, but I am at peace knowing that I did the best that I could, and what I thought was best, at the time. We find ourselves put in a role for which most of us have no training. From where I sit, I think you must be applauded for doing, and continuing to do, a most remarkable job. The strength and compassion you have shown over this long, long, haul set you apart from many. Your parents did something very right that you have been so dedicated in caring for them. I didn't understand as a child when my grandmother would talk about people earning stars for their crown, but I do now and you must have hundreds!

Joined: Jul 2003
Posts: 235
didier Offline OP
Gold Member (200+ posts)
OP Offline
Gold Member (200+ posts)

Joined: Jul 2003
Posts: 235
Thanks, everyone. I truly love you guys. You have no idea how much help you've been over the past few years. You've been my shrink, my friend, my educational resource and more. Thanks again.

Best regards,

Dave


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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