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I'm new to this and need to get this out!

Posts: 2
Joined: Aug 2008

First off—Please bear with me…this is my first time on this site (or any like it) and my first time dealing with anything like this. I know I go a little off topic, but I wanted the story out there for you all to understand. Along with that, I feel like I’m just whining and have almost not posted this for a few days but really just need to get it out and share. Thanks for reading.

My friend was just recently diagnosed with lung cancer. I work with him, he is 55, and I’ve known him for about 2 years. We’ve only been good friends the last year or so. He has always kind of been a loner and I’m rather new to the area so don’t really know many people my own age (I’m 27) so we used to have dinner together and hang out playing cards and talking about life. He lived a crazy life and we shared some great stories!

He’s a great guy with a great heart, but he has made many very bad decisions in his life. Who hasn’t?? But he had a drinking problem, drugs, etc. Most of this was many years ago, but recently he has started drinking again occasionally. Along with that, he’s had chronic back problems, a few surgeries and some severe depression. Needless to say, to begin with, he wasn’t an incredibly health person. His PCP seems to think that medication is the best resource and he abuses it, yet she keeps giving him stronger medicine. It doesn’t make any sense to me. (And I’m sorry for going off topic, but this is all how it started 3 weeks ago)

I got a call on a Friday that he was in ICU at a local hospital. He had overdosed on Oxycontin. It was very scary and I immediately went up there. I knew that it was going to happen. I had seen him earlier in the week and he was doing horribly. Looked terrible, had lost even more weight (he lost 60 lbs over the last year—another thing his doctor didn’t seem concerned about), was not really coherent or at all “with it.” But neither I, nor the owner of my work knew what to do---how to handle it. (I should also point out that I work for a small family owned business and he has worked there for 30 years….everyone sticks together and our bosses are amazing people that treat employees like family) After being in ICU and numerous tests, x-rays, etc they found something that appeared to be a lump on his lung and without even having the proper tools to do full testing they were saying cancer. He then got transferred to a bigger, move advanced hospital where they did proper testing and found Stage IV non-small cell lung cancer. He has a large tumor on the upper quarter of his lung and also another large tumor on one of his adrenal glands, and another that is not as big on his other adrenal gland. Needless to say, the prognosis is not good. After days in the hospital they came up with a care plan. They gave him his first chemo treatment last Wednesday, more to keep him comfortable than anything. When they finally released him from the hospital he had 13 prescriptions and it was a lot to keep straight. He lives alone, has never been married, has no kids, and really only one other close friend. Along with that, he has one brother that he hadn’t spoken with in many, many years. During this ordeal I ended up calling his brother, not knowing the whole story, but figuring it’s family and they only have each other so he should at least know what was going on. His brother has since visited a few times, called a few times, but really isn’t involved in his care.

So how do I play into all of this? I know what it feels like to not really have anybody and I didn’t want him to feel like he was alone. So every single day since that first day in the hospital I make sure I go see him, even on the days when after work all I want is bed….or to go see my friends and have a drink. I call him numerous times a day and have become his health care proxy. When he came home, I got him all sorted out, cleaned his “bachelor pad” of a house that hadn’t been cleaned for years, sorted his meds, and I try to make sure he eats and is taking care of himself. Along with that, I’ve been printing him info on his cancer that he requested and other resources that he may find helpful since he doesn’t have a computer and we don’t really have any support groups close by. I also am the source of information for the people I work with, so while I’m working all day I give people little updates and answer all their questions, etc. And truly, I am getting overwhelmed. VERY OVERWHELMED. I am exhausted everyday. I just want to get some sleep, but I’m not able to sleep well. My back, shoulders and neck are killing me and I don’t know what to do. A few people at work have brought some food by his house, which I thought was very sweet, but overall very few have gone to visit or even called him, yet they go on and on about how worried they are. It’s becoming bothersome to me because they call me daily asking to know everything, and I just wonder….is it because you like the freakin’ gossip?? If you really care so much, STOP BY! It’s a short drive. I understand everyone has their own lives, their own issues, and their own priorities but come on people. I try to treat people how I would hope they would treat me, and is that what they would want? It’s weird because I’m trying my hardest to understand. I know that some people don’t like hospitals, but when he came home, they could have visited. He has nobody, and everyone knows that. Along with that, (and I know I’m being selfish, which I feel terrible about) but if someone would say they were stopping by to check in on him and make sure he’s eaten, spend some time, etc…. I could get a night off! I don’t at all think he’s a burden (and I truly mean that, I love him he’s a great person)….but I also know that if I burnout it is not going to help either of us. People have said that maybe coworkers don’t know what to say in this situation and are uncomfortable, but GUESS WHAT??? Neither do I! I’ve never dealt with anything even remotely close to this, and I’m just making it up as I go along hoping I’m doing the right thing. It’s very difficult, but it’s not like we sit and talk about him dying everyday. He actually is, for the most part, in good spirits. He is realistic about what is happening and he’s not miserable everyday. I sit and talk to him like I did everyday before he got this diagnosis.

We are also working on all the final wishes and such which I’m trying to help him sort out. There are many things I should know as his health care proxy and I’m fine with that, overall its going ok, a bit stressful, but he’s taking it well, and we are moving along. As sad as it is, it needs to be done and we both understand the importance. It is a little difficult going over things like his will, where his money will go (if there even is any after all the medical costs), his car, etc because his answer is “I want you to have it, you are the only one that really cares about me” which makes me feel uncomfortable. I’m only bringing it up so that everything that is supposed to be answered is answered. I think I may try to get some help in that area because I don’t want him (or anyone else) to ever think I’m doing this to get something out of it. I know that he knows it, but I still feel awkward asking him all those questions. And I also don’t want there to be an issue of why he named whomever he did.

Lastly, he ended up in the hospital again last night. He had a follow up chemo appt, and besides him being incredibly tired & oftentimes constipated, along with a very low appetite he has handled the chemo well so far. But apparently at the doctor they found a blood clot in his lung and his heart rate went up to 160. Although it went down again, they kept him overnight in CCU and he’s staying again tonight so they can monitor him. He really just wants to be home and tonight I felt he gave me a little attitude when I left because he was lonely and I was so exhausted I really couldn’t stay for long. I explained it’s a 35 minute drive and I worked all day and was just exhausted, but I wanted to at least see him and bring him his Fixodent! I know that the attitude wasn’t really directed at me, but it made me feel like a terrible person for not staying.

The thought of him living alone also scares me, but there is nothing I can do to help him. He does have a visiting nurse two days a week but I also worry about his depression kicking in and all those meds surrounding him. I mean, what if? Although he didn’t TRY to kill himself when he overdosed, who knows if he ever would. He sometimes is in so much pain that he just keeps taking pills until it goes away, or something worse happens, which is what happened last time. (Although honestly, I think I’m over thinking this too much today just because he was not in a good mood today) And also, how is he going to LIVE…pay rent, get food, etc?? Never mind his medications….It’s all too much. We set up a fund for him at work and hopefully the employees and great customers will help out. That is one benefit to a small town—everyone knows everyone, and has for long enough that they truly care. But I just don’t know if it will all work. He tried for Social Security and Disability but they said he’d get a check in February…..not very promising when you have a far progressed form of a terminal cancer.

Ok…so that is my rant/getting it all out. I just needed to share some of this and it’s hard because most of the people I know around here are people I work with and I’m not trying to badmouth them, but lately I feel a bit of stress and I wish they would just HELP! It’s driving me a little crazy!

Anybody have anything to say or any questions please let me know….hopefully this rant helps me or someone else. From what I understand it’s just as crazy and overwhelming for everyone so here is my story so far---it’s only been 3 weeks. I know I need to look out for me too, but I just can’t imagine him not having a visitor for one whole day so I make myself do it. I know that I’ll get better and move on…..and the fact that he won’t ever have that opportunity is what drives me to be there for him now.

Anonymous user (not verified)

Sunshine, here is a suggestion:
You say this is a small town, small family business you guys work for, etc.
OK...so get ORGANIZED. Call a meeting of his friends and co-workers and tell them what you posted here. Ask for commitments of specific blocks of time and/or specific needs he has to have met.
EXAMPLE: Joe comes on Sat. a.m. from to 8 to 10 and takes care of...(fill in the blank...) Fill as many time slots as possible and lay a guilt trip on people if you have to.
NEXT: Get legal help! You have no legal authority in his life and that's gonna be a major bummer if his family has any problems with what happens to his assets later on. Look for pro bono or hardship legal agencies.
Find any and all agencies that will contribute to his care and practical needs. Don't forget charitable institutions like churches, etc.
It simply is not realistic to expect yourself to cover every base. But you may be the one who can get a plan of delegation in place that will cover his basic needs and keep you from certain burn out. Good luck and God bless you for standing in the gap.

Posts: 2
Joined: Aug 2008

Thank you for your suggestions. I'll look into something. I also asked someone today to "cover" for me so I could go to the beach on Sunday. A much needed ME day. And thank you for the legal suggestions! I'll look into that or see if someone can help me.
Lastly, it means an awful lot that you said it's not realistic for me to cover all the bases. I keep telling myself that if I just go and do it, I'll be fine....all the while my body is telling me NO. Yet, I'm saying I'm just weak and forcing myself. It's quite difficult! But thanks again!

Posts: 1
Joined: Aug 2008

Hello, my name is Shirley, and I also am new to this site, your letter was the first one I read. I want to say that what you are doing for your friend is really wonderful. I am a retired nurse and am now a caregiver for my long time boyfriend who has lung cancer. First off, find out from the hospital or Doctor's office what any other plans for treatment they have for your friend, if they have done all they can do, have them refer you to a program called Hospice, or call a social service and ask for Hospice programs. This is a medical program for end stage (no more treatments) for terminal patients. They come to your home and visit and get anything you need, meds, hospital equipment, o2 machines, ect. they are wonderful help. NOw, if you get hooked up with Hospice program, they have sources, attorney's ect that will come to house and do the legal work, such as Wills, ect. for your friend, so that way you may fill better when your friend leaves his things to you. SEcond, someone (you) or his family needs to become his Durable Power of Attorney, that way you can tt Social Security Dept. any doctors, anyone about his money or financial worries, or anything. BECAUSE, as you said, how is this man suppose to live financially if he doesn't have a check coming in, someone needs to push, and push hard for him to get that Social Security check starting to come in. Now back to the part about how he wants you to have his belongings, car, ect. that is PERFECTLY fine, it is his wishes and no one else's business. If he has a close family, they may resent what his wishes are, but too bad, they aren't the ones taking care of him. Remember, if anyone says anything negative about the situation, let them cast the first stone, and then ask them to go over there and care for him 24/7, sooooo, let them all shut up, or stand up!!!!! This advice is to you from me, I am not an attorney, but I have been in your shoes and this is what needs to happen to protect your friend and look out for him. I had been with my boyfriend for eleven years when they discovered his lung cancer. It is now going on four years now and he is still suffering from cancer and under Hospice care. It was very difficult being JUST his girlfriend and trying to get things done for him, financially, ect. So an Attorney told me how I could help him, and that is why I am telling you the legal steps, it is the only way SS and others won't jack him around, they probably are aware of his severe and terminal condition, and also aware that if there are no legal heirs, wife, children, ect. they do not have to pay out any bucks. You also can discuss with your friend about what he wishes to leave you, a car, his house, those two things can be transfered to you after his death by a simple Transfer on Death Deed. With a car, just go to title place and have them add on a TOD to title, costs $5.00, then pay an attorney $75.00 to make a house deed listing you as beneficiary under a TOD. That was you avoid wills and probate court, also, is he has a bank acct. you can have a TOD on that also, WHATEVER are his wishes, like I said, no one's business but you and him. But don't waste any time on getting this done, because as a nurse, your friend may not be around long. BUT that is what they thought about my boyfriend, and he has surprised us all, three years later, all kinds of treatments, radiation, then cancer spread to his brain, and he had whole brain radiation, then his hearing is almost gone and now the other day we were told he has a large tumor behind his left eye and will be blind soon. This is one tough man I have, he just will not give up easy and that is why I love him. Don't ever think this is easy, it is very hard, even for me as a retired nurse. PLEASE take this into consideration, if you put yourself out there, commit to him as his caregiver, you just can't quit, it isn't possible, because your own personal feelings get in the way. Honestly, there probably isn't one day that I don't think about running away, but I don't. I promised him and God that I was gonna be here, and I will, but it is hard and gets harder every day. I have no personal life outside of this house because he cannot be left alone, he is a very high fall risk. He has fallen twice and once broke his nose, and I was right here too! What you have done for him is commendable, and you will be repaid, IF not here on earth, then surely in heaven. BUT from me to you, think about it alot and know your own limits. And whatever you decide is best for you and him, don't ever feel quilty, because God knows in your heart how you feel, and he won't led you anywhere he doesn't want you to be. If he brought you to it, he'll get you through it. God Bless You, God Bless your friend. Hope to hear from you. Best wishes.

Posts: 1
Joined: Aug 2008

I am 52 and my husband is 61. He was diagnosed with Pancreatic cancer at the end of April while we were on a road trip to pick up our youngest son from his first year of college. I thought that he would be sick, really sick for a year and that he would get better and we could continue our life, all the dreams that we planned for. He was a big guy, 6' 2" 275 pounds, full of life and fire. On the trip, I noticed that he was really tired, didn't want to go places, do things, etc. But because he loves me so much, he did more than he felt like he could to make me happy. We started chemo full of hope and like your friend developed a blood clot, actually 2, but it was the one in the liver that caused the doctors to discontinue the chemo. He now weighs 175 with weight dropping daily and we fight about eating, drinking, waking him up for medication. Because of the liver malfunction, he is confused, disoriented. When he stands up, he can't find the couch right in front of him and he forgets to put one foot in front of the other to walk. I put the commode right next to his bed because it is too hard to walk him to the toilet and he almost fell a few times. I feel like my husband has already died and his body just hasn't caught up yet.I try not to think about the bills and debt because the days are so precious that each one could be his last. When I feel tired or sorry for myself I keep telling myself that in a few weeks I will be all alone and will be wishing that I could be washing his back or feeding him soup, so that I do this. I think about all the fights over dumb things and all the time we wasted. Now every moment is precious. I keep thinking that this is a bad dream and that I am going to wake up and everything will be back the way it was just a few months ago when we were planning to put the house on the market and head off to New Orleans in our motorhome to spend football season with our son at tulane and then travel around the country. Don't worry about the money because if your friend survives, he can deal with finance stuff when he is better and if he doesn't, then let them try to collect. Thank you all for listening, I need to go check on my husband, it's 5:40 am and I have to wake him up to give him medication and he is going to be pissed and yell at me to leave him alone, I just keep telling muself that this isn't my husband, it's cancer and what is left of my husband and that if he was healthy, he wouldn't be yelling at me.

Posts: 20
Joined: Sep 2008

First of all, take a step back. What you are willing to do for your friend is a wonderful gift, but not one you can give alone. My husband has terminal cancer and I get help from friends and family for his care because one person can't do it alone. My advice is look into Hospice care. Hospice is wonderful, they have nurses and caregivers that will stay with your friend when you are not therem they will moniter his meds, get him counseling and can even provide alot of comforts such as massage therapy and Reike. Hospice generally takes what the insurance company gives as payment and can even give you support as well. Don't be afraid to let the people calling you about his health that if they want to do something for him, they can cook a meal and stop and give him som company as well. It never hurts to ask, all some one can do is say no. Also ask his brother to be more involved, this is not a one person job, as the old saying goes, "It takes a village".

Posts: 7
Joined: Aug 2008

The sad part is no one can help him, but we can do what we can to make things easier for him along this journey. Hospice is of course a good idea,but at what point,pallative care is first,look into that. I believe he needs not to be alone,could his brother help out by staying with him a few days a week or is that out of the question? Don't try to do it all yourself,,use whatever help you can,its got to be a joint effort by all, whoever all may be!!!I have to say your being non judgemental is great,maybe some have turned their backs on him,but you have hung in there and I am sure he is grateful. He may qualify for some medical assistance,meaning meals, rides to the facility, etc.use all the tools ,and smile alot,make him laugh, as it really helps, even in a sad situation!!! i WILL SAY SOME PRAYERS FOR YOU BOTH, Gene

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