Alone and losing my mind

3 Posts | Page(s): 1 

Alone and losing my mind

by Aurelia5 on Tue Jan 22, 2013 02:58 AM

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This is my first post. After a bad experience with a chat room,and several other sites, I worried I wouldn't be able to find a forum with compassionate, sympathetic people who care about helping others. The people in the chat room were all very self centered, cold hearted and downright rude. I was amazed anyone would want to go there, but they were all similar, so maybe that was it. I read some of the posts and replies here, and saw very nice people, and people that are in the same boat I'm in. I have extensive experience as a caregiver, and also unfortunately, have experience with some of the most horrifying medical side effects you can imagine. I want to help other people who don't know what they are seeing to understand these side effects, and how to get rid of some of them. It makes me happy to be able to help someone, and have them acknowledge that I have. And I believe in letting everybody know how someone has helped me. Mutual positive reinforcement is so important in helping keep one's sanity when dealing with something as horrible as cancer. This is one of the problems I have, is that except for one friend on the other side of the country, I am alone to take care of my husband who has terminal prostate cancer. His family is neither wealthy nor nearby, though they are very supportive in any way they can be. I basically have no family. I am writing now because I am scared to death. Our history -- when my husband was diagnosed at 52, we were so young and we thought, healthy, that we hadn't gotten life insurance. We don't have kids. So immediately we went through all our savings on the doctors and medication, because we didn't have insurance either, and quickly found out who in his family cared and who didn't. His father, who is worth over a million dollars, very reluctantly gave us some money, and later, when we were again desperate, and REALLY not wanting to call him, we had to, and he wrote Brad, my husband, a note telling him not to bother him in his retirement. Fortunately we have one friend who saved us from homelessness, and has let us know he won't let us sink. In the last five and a half years, since Brad was diagnosed, he has, due to his amazingly positive attitude and the fact that the pain killers they give him work, managed to get us fully insured, completely set up with social security benefits, because I am disabled as well, and able to pay for a move to a place we hopefully can rent for years. We are now at 300% below the national poverty level, but are comfortable. Anyone needing help with getting social security benefits, or needing help with insurance, I'll be happy to help you through it. But he is very sick. The treatment for prostate cancer is antiandrogens, which completely remove all the testosterone from his body. And testosterone is what keeps a man strong and vital, pain free and energetic. He is none of those. He is like an eighty year old man, but still has the amazing positive attitude. Because, you see, he has to take care of me. For the last 22 years, he has treated me like a queen, done all the household paperwork, taken care of everything that needed to be fixed, and at one point was supporting my elderly parents, as well as running two businesses. I have been spoiled, wasn't allowed to do any of the paperwork, he did everything, and I loved every minute of it. Irresponsible? Unbelievably. Guilty? As guilty as can be. You can not come close to imagining how much I love this man, but to say that we have spent only 17 nights apart in 22 years. I love him more than the flowers love the sun. He has even managed, with our friend's help, to find life insurance so I will not be stranded. But it is not going to be available until April, and though he swears he's fine, he's been acting very differently, and that's part of why I'm scared to death. If, heaven forbid he didn't make it until next summer, I will be out on the street with a house full of furniture and two cats, and about two thousand dollars. Add to this the fact that I had to have surgery for a torn rotator cuff tendon in my shoulder last July that came halfway undone and I am having surgery again in a week. I will be in a sling for six weeks. One of the other problems is that even though I'm only 56 years old, both my knees need to be replaced, because the pain of standing and sitting is too much to endure. Then there is my back and my neck, and another thing that I believe is caused not only by all the pinched nerves in my back, but by sheer stress. It is full body pain, similar to what fibromyalgia is supposed to be but ten times worse, so that I literally hurt all the time throughout my whole body. I constantly feel like I've rolled down a set of stairs, or been beaten with a chain. And it never stops. The huge fear I have right now is that with the three surgeries, I need to recover soon enough to be able to take care of Brad if he starts getting worse. That's going to be about a year before I'm whole. The one thing I don't yet know how to do is find people to come help us. The insurance says to talk to the doctors, the doctors say to talk to the hospitals, and the hospitals say to ask the insurance. I am in too much pain to continue, and after my surgery, my posts and replies will be short, since tapping out long letters is practically impossible with one hand. I thank anyone who made it all the way through this post, because writing it down helps to get it out of my head. Aurelia

RE: Alone and losing my mind

by herrmajo on Wed Jan 23, 2013 07:25 AM

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Talk to social worker at your hospital, they will help you open some doors and show you how to connect with people that can help.

Sorry for the crappy road you are on.

RE: Alone and losing my mind

by AnneLilja on Wed Jan 23, 2013 07:54 AM

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I'm so sorry to hear about your very difficult and complex situation, but happy to hear that you and your husband love each other so much. I don't have any practical advice for you except to try to get help through a social worker. I wish you both the best of luck.. Sincerely, Anne
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