now what

neeie
neeie Member Posts: 6
edited March 2014 in Caregivers #1
Now what my husband has SCLC and since Aug we have had surgery, radiation, and chemo. The doc said he wanted him to have 6 treatments no less than 4 we are going for our 4th treatment and doc says that is it because he is too sick to handle anymore, so i said now what he said well we will watch him? And i said and then what he said well i told yall that there is no cure. What the ----!! that is not what i wanted to hear. Now all i can do is watch and try to be positive for him. he did not say anything after that and i know it must be tough, he already starting giving the kids things he wanted them to have and i asked him what he was doing. he said just wanted him to have that, i said we were nowhere close to that he did not say anything. So NOW WHAT? i just want to scream and run away. All i do is stay in the house to take care of him. Sometimes i just want to run as far as i can so i can cry and cry and don’t have to be so strong all the time. The son he gave stuff to does not even realize it, i know the kids are all grown up and have their own family but i just want to slap them and say what is wrong with all of you. So what do i do now i am so scared that something will happen and he is my whole world? So i don’t sleep well and it seems that my brain won’t stop thinking about anything. Just won’t stop at all. i tell him every day that I LOVE HIM. Sometimes he just yells at me about nothing and i know he can’t help it because he does say he is sorry and that he just can’t help it. He does not talk a lot about it and i can’t imagine what he is feeling. Well sorry about going on just needed to vent. Keep thinking that one day maybe can be at a beach or cabin and just go blank for about a week.

Comments

  • skipper85
    skipper85 Member Posts: 229
    #2
    You Need Help

    Hello Neele,

    You would benefit from seeing your family physician and explaining your situation. He can prescribe an anti-depressant or anti-anxiety medication for you. It's what's keeping me going (husband Stage IV). I know exactly how you feel about needing to get away. There are respite programs out there - have your husband's doctor hook you up with hospice. They are wonderful. They will help you guys through this. Hospice is not only for the patient but for the family as well. Your kids may be in denial or may not realize how much you need them. My husband doesn't tell me what or how he's feeling either. I don't even know if he comprehends what the doctor told him after his last hospital stay last week. He was recuperating from the anesthetic and on pain meds. He refuses to use the oxygen or spirometer but today he said he will start drinking the Ensure again.

    Again, please see your family doctor and get your husband's doctor to contact hospice. It will make a world of difference to you. They may even be able to help you with a respite program where you will be able to get away for a day or a few days.

    We are here to help you through this. You are not alone. You can vent all you want anytime you want. Sometimes a good cry helps. Keep us updated.

    (((HUGS)))

    Skipper
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #3
    Agree with skipper
    Neeie, I hear where you are coming from. You are surrounded by people but you are going through this alone. Posting at this site and receiving supportive, guiding responses is a great thing to do, but it is only one of many options open to you right now.

    Your husband seems to grasp what is happening to him. I don't know your family dynamics but perhaps it is time to sit down as a family, or make individual phone calls, or whatever works best for y'all, but to get this out in the open. Deal with it as a unit, not as individuals. There is strength in numbers.

    Skipper is right in that hospice is there for not just the patient but for the family. I don't see where you have an actual prognosis or suggested timeline, but hospice does not just come in at the very end of a patient's life unless that is family and patient's wish. They can be involved much earlier.

    You need a clue on what to expect and the doctor can/should help you there. If he is not forthcoming with that information, call and speak to the nurse or nurse practitioner in his practice. In fact, in many places they must make the recommendation to hospice.

    It is okay to get out of the house and run and scream and cry. If your husband can be left alone, at least get out in the yard or walk around the block several times a day. You must take care of yourself, Neeie, or you can't be there to take care of him. Find a church or call your own minister: he or she likely has training in just this situation and can help.

    Yes, you feel like you are losing your mind because this is overwhelming and your mind would rather be anywhere BUT there facing an impending loss. Most of us have been there at some point in our lives.

    As his caregiver, it is up to you go forward as you wish this to end: this can emotionally battering or it can be a healing, nurturing experience for your family.

    You will be in my prayers, Neeie. Let us hear from you.

    Hugs.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #4
    Giving
    I don't post as often these days, but I felt a need to share this with you. About three days after my husbands first surgery and we had received the stage 4 dx along with the "treatable, not curable, life shortening" speech, I walked into the hospital to find a friend sitting with my husband. This friend and my husband had the same collecting interest. They were discussing how Doug was going to disperse his collection. Talk about a shocker. Thank goodness I had a number of things in my hands. I turned around, and by the time I had set everything down, I had realized that this wasn't about me. He was trying to come to grips with his dx. Later, we were able to talk about it more calmly than I would have been earlier. My first reaction was to kick the friend out of the room, screaming at both of them. Later, we were also able to laugh about it. In the end, Doug continued to collect. During the last few weeks of his life, I encouraged him to give those special things to those he wanted to have them. Yes, in the end, I did lose him, and yes, that was my greatest fear. He died in October of 2009, but he lived longer than anyone expected. He was glad he didn't dispose of his collection early on because it gave him something to do and talk about besides cancer. I actually received a new addition to the collection in the mail the day after he passed away. It was a trade and I had to call to find out what I owed the sender. I was also able to follow Doug's wishes for some of the items including a donation to a museum. I think giving things away is very common. I can tell you that it didn't mean that Doig was giving up. It just meant that it was something he needed to think about. He still fought to buy as much time as possible. He still wore his bracelet that said hope. I'm sorry this is so long. I probably wrote this as much for me as for you. This is hard, and I am sorry you are having to deal with it. Take care of yourself. Know that you are not alone. Get whatever help you need. Fay
  • karenbeth
    karenbeth Member Posts: 194
    #5
    so sorry
    I am so sorry, neeie. Your post hits close to home as I am terrified I may find myself in the same place soon. I think you received some great advice from people who have been there. Don't be afraid to keep asking the doctor or the nurse practioner questions if you don't feel they have been clear on something, or are not communicating enough information. And please keep venting here or elsewhere--don't keep it all inside. My thoughts are with you.

    Karen
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #6
    We Are Here For You
    Hello and welcome to our caregivers family. Oh my goodness!! I was ready to scream after I read what your husband's dr. told you. What kind of a dr. would tell their patient that? Not a very good one. You need to get a 2nd opinion and fast. Do not feel bad about coming here to vent your feelings. That is what we are here for. We are here to listen. I am hoping you are feeling a little better now that you have gotten all of that out. Have you ever considered starting a journal? One for you and your husband? Most times it is difficult to express our feelings, but we can write them down. I did this for my dad and mom, and it proved to be very helpful. My dad passed away in March from esophageal cancer, but he and my mom grew so much closer his last 16 months. Thanks to that journal. Yes, do continue to tell him you love him. Communication is very important. Please consider getting a second opinion. Keep us updated. We will be thinking of both of you.
    Tina in Va

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