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: 38
Joined: Jul 2010
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Monday July 19, 2010 12:05 PM
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Hello. This is my first time doing this. I did write in the New Member Chat Room. My issue is that four days after my youngest daughter's wedding, he dad had a bio and found that he has stage 4 postate cancer and the next day he almost died. He now has tubes in his kidneys and was given 18 - 36 months to live. He came home to his oldest daughter's apt. where I also live. It is now over two months and I need a break. has anyone out there taken care of an ex? His daughters and his siblings asked me since I am home and he needed one floor plus has sterile dressings. At first, there was a nurse coming in and a physical therapist.
Now I change his dressings IF he will let me. It has become a fight as he has had double infections that compromises his system. We are doing everything we can to extend his life expectancy including getting rid of one doctor who would not even examine him on the two visits he saw him after being in the hospital. He does have the best cancer doctors in our area, but he is in deep denial and overwhelmed by everything. We are just as overwhelmed and his oldest is doing everything she can for her dad.
My issue is that I want my life back. Am I wrong for feeling like this? I was planning on getting my passport, saving for a trip and other things. I can't even think straight. I really need a break and he has gone to his home now for two overnights, but there have been days when I am really stressed out. He lied and went out one code red day and when I thought something had happened to him as he told me he was not leaving the building, I went to search for him and having COPD asthma, I forgot and went out for just a few seconds, but it affected my breathing.
It is hard as he has said some very mean things to me about four years ago and his girlfriend was harassing me even though I did not know he had a girlfriend. Really did not care that he had one, but we have two children and our youngest was in college out of state. We still had to care for her medical and financial needs. This led to him saying that he never liked me, wanted me, etc. and now I think he regreats saying those things, plus he claims he never said that to me in the first place.
My oldest is upset with how I feel. On one hand, being a Christian, I am doing the right thing, but as his ex, I want out. I even asked her to find a place close by on her timeshare where I could go for a few days. Right now, he is at his house, but I have not been able to focus on things. Even if he goes out, I just find myself sitting around not doing things as it is just relief having him out of the house.
Please let me know if this is normal, or I need to sit down with my girls and talk about this again. He is to go into the hospital for a procedure that may lead to surgery and he is upset about that and need support. I wish his siblings would assist, but I know that he is not telling them the truth about the cancer, but it is not my call to tell them.
Thanks for anyone who takes the time to read this and responds.
JJ
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Chipper
Posts: 3
Joined: Jul 2010
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Monday July 19, 2010 2:18 PM
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Hi JJ,
The assistance your are providing him is comendable. Caregiving is exhausting work, and it sounds as if your biggest battles are with your exH's attitude.
You can't control what he says and what he does. Unless his illness is causing cognitive problems, his decisions may be lousy, but they are of sound mind.
You can control what you are willing to do by establishing boundaries. These are your boundaries delineating what you are willing to do, not his.
For example, you can say, I am willing to help you so many hours a week. Period. You could say, I am willing to do these specific things, and make a list.
Enforcing boundaries is difficult when someone is in crisis, but is he creating the crisis? He could tell his family and get additional support from them. He could take better care of himself. He could follow doctors' orders. He could submit to dressing changes when he needs them so that he doesn't get an infection.
Go ahead and make plans for yourself and follow through. He does.
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Former caregiver to two women with Alzheimers (now deceased.) Spousal caregiver 12 years, now divorced.
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InTheMiddle
Posts: 38
Joined: Jul 2010
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Thursday July 22, 2010 8:26 PM
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Thanks Colette.
Yesterday was hard as I had to contact the doctors about him. They had to see him today. He did not want to go!!!! Excuses, excuses, excuses!!!! No money in bank, no money for parking, etc.! Guess what? We had money for parking and gas!
I was up at 5:30 a.m. to shower and get dressed to leave by 6:15 a.m. His appointment was at 7:00 a.m. He took his time! We just got to the hospital at seven without me getting a ticket as I do not speed and the city is money hungry!
If I was not with him, he wouldn't have told the doctors anything about what is going on with him. This is the hard part. He had to have tubes placed in his kidneys to save his life as the cancer is blocking the way from the kidneys to his bladder. I have to clean where the tubes enter his body with sterile dressings. He does not want to to change them. I guess he is scared that I will find something wrong and he has to go back into the hospital.
Things went well, but he has a few stiches. Guess who tried to go to the gym with stiches when we got home? YUP! I had to sit down and have a long discussion with him. We are trying everything to help him live five to ten years longer than the one doctor told him 18 - 36 months. Two other top oncologist said that if he ate well, exercised, went to the dentist, foot doctor, and primary doctor, he can live the longer period of time. I told him that his attitude is taking a toll on his daughters and he needed to act like he wanted to be here. This man would not have been in their lives if I had not insisted on it. They still resent that he would not go on trips with them. My oldest wanted him to go to Disney World with us two years ago, but he has this thing about the place. They want to have memories with him...pictures, but he doesn't get that.
I asked him just to hug his girls and tell them that he is sorry about cancelling all the doctor appointments his oldest made for him. He thinks that his cancer is just genetic and it would not have made a difference ten or fifteen years ago. WRONG!!! My father had postate cancer, but they caught it in time and he had surgery and was fine. One of my uncles did, too. I am trying to get through to him that regular health care even with the cancer is still necessary.
I went to see my diabetic doctor and let off some steam as my blood sugars are off and I should have been down at least 15 pounds since March. Now I am gaining weight and I just need a break.
Thanks for listening everyone. Gotta go! My family needs me. Keep me in prayer.
JJ
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colette
Posts: 374
Joined: Jul 2009
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Thursday July 22, 2010 9:48 PM
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JJ,
I am going back to the initial post.
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. . . I know that he is not telling them the truth about the cancer, but it is not my call to tell them. . .
I think it IS your place to tell ex's siblings when he refuses to tell the truth. If this is something that could run in the family, they would need to add it to family medical history.
My opinion is that a family meeting needs to be called and the facts need to be laid out. Their brother/father has a medical problem that needs to be dealt with. The caregiving is something that needs to be shared, not "dumped" on one or two people, even if it is only to give the main caregiver a break for a few days to a week.
A counselor/ombudsman at the hospital can make this happen. They understand the denial patients undergo, and the stress caregiving can put on one person.
Children (even at adult age) do not understand how caregiving can take a toll on us. Personally speaking, my children believe that dealing with their aunt is easy, and I make it look like A PROBLEM. Of course they do not walk in my shoes. Their relationship with their elderly aunt is a far different one than the one I have with her as caregiver. They are not with her 24/7.
I want my life back where I am seen as mother to my children and wife to my husband. I am tired of being a caregiver -- the ONLY one who takes the responsibility of handling my SIL's finances, giving her her meds each night (Hubby would not know what to do if I dropped dead tomorrow. Nor does he want to be told.), transporting her to and from doctor's appointments, being the "mother" that has to explain to the doctor the reason for the office visit b/c SIL says, "I do not know why I am here" although she has had Montezuma's revenge all night.
Your feelings are yours. No one can argue about how you feel. Until your oldest has "walked a mile in your moccasins, she has no idea how you feel and why. I hear you. There was a divorce decree which sent you and EX on your own ways. Now your children and his siblings are bringing you back into a life you thought was in the past.
You are doing the Christian corporal work of mercy -- Healing the Sick. First, you MUST look after yourself. As in the 10 Commandments I referred you to, "Put on your oxygen mask BEFORE attempting to put on someone else's mask." You personally have to find refuge from time to time. One lady on here who cares for her husband has gone to a retreat and now goes to Yoga classes to keep her head clear. Maybe you can find something similar?
Take care.
Colette
xoxoxo
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Family Caregivers are not paid because they are worthless; Family Caregivers are PRICELESS!
(paraphrased & source unknown)
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Tigger
Posts: 46
Joined: Jul 2010
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Tuesday July 27, 2010 7:50 PM
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Hey JJ- I'm new here too but you and I are facing some similar things.
My current partner has terminal lung cancer. He was diagnosed a year ago. Without a lot of chemo and a lot of radiation, he wouldn't be here now.
There is a strange denial that goes with cancer. I think that it is because cancer and death are often the same thing. On the other hand, I am a cancer survivor.
I was diagnosed VERY early and had a very good response to treatment. I was lucky. But even though at the outset I knew I was in a really good position to beat it, I went through a period of depression, anger, sadness, and denial. Fortunately, my doc caught that right away and got me help. I can't take most anti-depressants so that help was essentially talk therapy but it made a world of difference.
One of the things that my 55 year old partner has had real trouble with is the feeling that he has lost control of his body. People touch him in places he considers inappropriate and it is less than helpful when it is another woman. Where I can, I step in and do those things but I can't always. Your ex may have some discomfort around being so vulnerable with you.
Heaven knows I have no concrete answers. I'm having struggles of my own with being the caregiver to my partner. What I am certain of is that the issue is resolvable.
See if linking him up with a cancer support group or online site is helpful. Prostate cancer is a uniquely male issue and it may be helpful for him to find men to talk to about it.
What everyone has said about boundaries, limits, and so on is true and correct. As my partner becomes more limited in his ability to care for himself, I will be calling in family and anyone else I can find to pick up at least a part of the load. Those additional people may not provide direct care to him but if they are available to be with him for an hour, that is an hour that you can use for yourself.
There is simply no book called "Caring for a Cancer Patient Perfectly". I know, I have looked high and low for such a book. I struggle constantly with thoughts that I am not doing enough, good enough. What I am hearing is that you don't have to do this perfect.
Make a point of scheduling time every week for you. It's important.
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