The Family Caregiver Forum
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Welcome to the NFCA's Family Caregiver Forum - a place where all family caregivers can post questions, receive support and communicate with others.
InTheMiddle
Posts: 35
Joined: Jul 2010
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Tuesday July 27, 2010 8:10 PM
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DRIVING ME NUTS!!!
Hello, all!
I am feeling real stuck in the middle and feel like singing the cookie song "Squeezed in the middle, smack dab, in the middle!" At least it makes me laugh a bit. He went home yesterday, but kind of forgot to tell his brothers that he went back to the hospital Thursday and has stitches in his back and is not to do any lifting, etc. I went by the house and this crazy man had gone out to an organic food store and complained about the prices. His brother just got home as I got off my cell phone and I asked him if he had told him.
NO, NO AND NO! His brother said he needs to see someone, but I am tired and they need to do it. His sister did not really want to talk with me saying she just got home and would call me back. SURE!!!
Now it is "I am going back to work!!" I left that alone, but his job will kill him. They don't care and he might forget and do heavy lifting. I was informed by someone in the HR dept. not to let him as they have seen cancer patients trying to work and they push them and stress them out until they end up in the hospital, or worse.
i am trying to have a meeting with his family and my girls, but it is so hard as they are in denial in some ways, too.
To Tigger, thanks for the information. Yes, it is postrate cancer, stage 4 with psa leves of 1800.
I did talk with my new pastor today and he understands and it was nice to have his support. He wants me to take 15 minutes every day in silence to just relax with my eyes closed. I will. Right now, the EX is still at his house and I don't know if he will be back tonight. I told his brother he needs to as I need to see his dressings. He told me he looked at them and they are fine. Now, HOW CAN HE SEE IF THERE IS ANY BLOOD OR WETNESS LOOKING IN THE MIRROR??? You have to look at it close up to see if there is bleeding.
SCREAM!!! I QUIT!!!! It will be three months next week on the 4th and his doctor has to send something to his job as the Family Medical Leave expires on the 8th. He has sick leave and someone needs to get it through his head how bad he is. The cancer has spread to the lymph nodes and the bone.
My girls need their dad for as long as they can keep him around. Two of the best oncologist have told him with good care, he could live 5 - 10 years, but if not, he will be doing good to make it to his 60th birthday next year.
Thanks for listening. Gaby and Colette, I hope things are going well with both of you. Take care.
JJ
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Tigger
Posts: 44
Joined: Jul 2010
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Tuesday July 27, 2010 8:42 PM
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JJ, three words... Social Security Disability.
First you need his medical records. Get them by fair means or foul. What I discovered is that when they hear that he is over 50 and terminal, they fast track. I can send you a sample of what I pulled together if you would like.
It takes time for benefits to begin but they will try for the earliest possible date. LET THEM. You will likely need any sick leave that he has accrued in the event that there is a gap.
My partner is a programmer. He deals with the down time by working on an application that manages inventory for a Food Shelf. Your ex needs to find something that can keep him engaged.
I know that this shouldn't all be falling on you. Still, your daughters are your daughters. Sit down with them privately and talk about what kind of support resources they might be comfortable with. Group support can be wonderful, especially for people with no experience with therapy. You feel MUCH less singled out.
The ex needs to hear that you have limits on what you are willing to do. Sit him down NOW and explain it in no uncertain terms. If he refuses to pursue help, engage the hospital. I can about guarantee that they have a person specifically designated to help with psycho-social issues.
Stage four patients can get what I refer to as a "Case of the F**K ITS". This is a clear indication that they need mental health help NOW. Been there, done that. Not fun but necessary.
JJ, hon, you have no idea how much I admire you for taking this on. I KNOW all too well how un-fun this is. I actually think I have the easier road. There's VERY little chance that my partner will be alive this time next year (but I will keep praying for that) even if we did everything perfectly. The fact that I love him so very much lets me ignore many things. You are doing this out of the goodness in you and your faith. I don't know that I could.
(((hugs))). You are in my prayers.
Edited: Tuesday July 27, 2010 at 8:44 PM by Tigger
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InTheMiddle
Posts: 35
Joined: Jul 2010
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Wednesday July 28, 2010 3:00 PM
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Hi, Tigger.
Actually, he could retire from his job now. He wants to work. Advice was given, but as the saying goes "You can take a horse to water, but you can't make him drink!" He is not private sector and I am leaving it up to my girls and his family. I am bowing out.
I cannot take another day of him treating me just like he did for over twenty-six years or more. When I agreeded to this, I was led to believe by the doctor that his being at my home would be very short term.
I told both girls this morning that I was not going to care for him anymore. I will not take him to the hospital or doctor appointments. Let his two brothers and his sister take some leave and do something. I know that my girls are his legal next of kin, but I am not and he is making it known that he does not want me doing things for him, even thought he does not understand most of it. This man had not been to doctors or dentist, does not read any medical books or self help, does not want to hear any medical information and does not want to comply with his current care.
They can let him go to his house and have the doctor sign for a nurse to change his dressings twice a week. I have to take care of myself. This is the first time in almost three months that I have worked on my novel and preparing it to send in for my copyright. This is what I do to keep from becoming bored. I am published and want to get this second one finished as I have a third book in the works.
I may not be the greatest writer, but the work is mine and I am proud to have published a novel.
This morning, he called and within five minutes, he wanted to argue. i hung up the phone after a few minutes as I do not need my blood pressue or sugar to go up.
I can be there for my girls, but this is a man who will not even give his children durable medical power of attorney, let alone the oldest power of attorney.
I am very sorry he is ill and could have an early death. This why I crawl to the doctors to maintain my health. I have missed my appointments on three occassions in order to get him the medical help he needs. Not again!!!
I cannot get him to understand how is immune system is compromised due to the cancer and his work place is not the greatest environment. I know as I used to work there many years ago and have friends who still work there. One is getting ready to retire with 40 years of service.
Thank you for giving me information for him. I will pass it to my daughter and maybe she can get through to him. I just feel like a doormat and I had stopped being one for him a long time ago and I have to stop this.
Take good care of yourself,
JJ
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InTheMiddle
Posts: 35
Joined: Jul 2010
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Thursday July 29, 2010 12:10 AM
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Helo, again!
Guess who is back at my house tonight? Yup! Our daughter picked him up on the way home from work and guess who was not ready when she got there? She needs a taser or a cattle prod to get him moving. I have little to say since some people don't know how to say "I'm sorry."
I really do not expect for him to do that since he has NEVER said that to me, the children or anyone that we know of....ooops! He did say it five years ago when I kept him over here after major surgery. After three weeks, I sent him home as he was very rude.
I told my daughter to find a support group of men for him. He has tried to make small talk and this is because I talk to the television. I was not speaking to him, but he tried, but it would be nice to hear "I AM SORRY I WAS MEAN OR RUDE TO YOU. I KNOW THAT YOU ARE JUST TRYING TO HELP ME." Fat chance!
Anyway, edited eight chapters of my book. It is a murder mystery. My first book was romance. Not a big seller, but it is published. However, I started a short story for a contest and it is about two caregivers who meet in the waiting room at a hospital. Still developing the storyline, but yes, about wonderful people who give of their time and life to care for a sick family member or friend.
The world would be a dismal place without caregivers. Keep up the good work as I know that some of you feel just like me, but we keep going because we care. I do care about him, it's just that my health must come first. My A1C went from 6.4% to ^.9%. This is for my blood sugar. I will have to work real hard to get it back down.
Hey, Colette, have you ever met another caregiver in the waiting room and they talked to you and you helped each other?
Now I must go as it is after midnight and I need to try and get eight hours. Thanks for all of your support and I hope that my two cents to others has helped them.
JJ
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