• anxiety

    Asked by jennjd00 on Monday, March 25, 2013


    My brother has AML M-6. He has been in the hospital for a little over 6 weeks now. He seems to be having some hospital delirium. He says he wants to go home, he tries to get out of bed, sometimes he refuses medication, sometimes he tells us he is not going to make it out of the hospital. There are times he tells us things like he is locked up in a room and cannot get out. he has not been eating much and has been sleeping a lot. He has been very ill and I think much of this is from all he has been through(chemo, hard time getting his WBC up, infections etc.). Has anyone experienced any of this while long term in the hospital and if so what did anyone do to help? medication?Therapy? I have brought up his favorite music CDs, brought in a TV to have him watch a few comedy movies. Any suggestions you can give me would be so helpful and greatly appreciated.

    7 Answers from the Community

    7 answers
    • nancyjac's Avatar

      From what you post, it sounds to me as though your brother is very rational. He had been in the hospital for 6 weeks and he wants to go home and is not wanting to die in the hospital. He wants to get out of bed. He feels as though he is locked up because he is not allowed out of bed and not allowed to go home. All of that is perfectly sane and reasonable.

      A friend of mine died of stomach cancer earlier this month. He felt much the same way. He wanted to come home from the hospital and we moved heaven and earth to make that happen. We had a hospital bed and oxygen equipment delivered to his house and we arranged for a nurse to come daily. He died at home surrounded by family and friends and his beloved cats.

      over 4 years ago
    • carm's Avatar

      I can hear you concern in your words and I know how distressing that behavior can be. I am an oncology/end of life nurse and I have seen that behavior all too often. I would hope that the staff is giving him an anti-anxiety medication. If not, I would recommend requesting a benzodiazepine like Ativan or even better, a drug called haloperidol. I won't mention the name of this delerium you describe here, only tell you that it can be controlled with these medicines if needed. This behavior can go longer than a few days. Personally, as a nurse, I let my patients act it out because I understand its profound and necessary meaning. However, as a family member, you might not want to, and would be better off using medicines to combat the anxiety. Contrary to a prior post, I do not agree that the behavior is rational, and you are most correct and extremely astute to describe it as delirium; you can tell that you know his personality all too well. I wouldn't be surprised to hear that he might also be picking at blankets or clothing also. If you need further information, I am here to help. Best of luck to you, Carm RN.

      over 4 years ago
    • SMT4's Avatar

      I can see both you and your brothers side of the equation. It sounds as though you are doing everything you can do to support and bring him comfort during his stay. I think bringing bits and pieces of home to his room is helpful and can make the transition of staying in a hospital as oppose to your own house a little better. I think he is like all of us hospitals don't become friendly and comfortable the longer you stay. Is there a way that he can change his scenery in the hospital? I didn't see you mention anything about isolation or reverse isolation so is he able to leave his room and visit the hospital gardens or cafeteria during the day just to get out and see something new ? That might help to give him some different scenery. Just a suggestions.

      over 4 years ago
    • LisaLathrop's Avatar

      I went through a similar situation during my AML cancer treatment. Initial I had a 2 month stay in NE while my children were in the care of friends in ND. And those 2 months were just the beginning...initial chemo and waiting for a bone marrow match. I BEGGED to go home for Halloween and my youngest son's Harvest Festival play. That brought my spirits up a bit and fortunately my doctor in NE had my treatments sent to my doctor in ND so I did a few chemo sessions there while we were in the midst of a move to NE....Dec. 26th we left. Of course, I caught an infection on the ride down and was immediately sent to the local (unknown) ER for a dose of Vancomycin. Upon arrival in NE, again - straight to the hospital where I stayed, awaited and received my BMT and spent nearly 100 days in the hospital. Those hospital stays were very rough on me. My kids were not able to visit much due to school, and one was off to college. My husband was with me everyday and he started posting every card, letter, piece of artwork (I was an elementary art teacher prior), and decoration sent on the walls of my rooms. The nurses claimed I had the best decorated room on the 7th floor - and it sure brightened my days! If they would only allow a short visit from one of my cats....to cuddle and purr and destress...but no, a stuffed animal to hug and hang onto had to suffice. My husband brought me his laptop and we had a lending library of movies, books, games, and puzzles on the floor. If you haven't started a CaringBridge site (www.caringbridge.org) do so immediately! It allowed my husband to post daily to reach all of our friends and family at once. And when I first woke up each day, he read all the greetings and well wishes to me first thing. That started my day off with a smile - knowing there are so many people out there who are caring and praying for the patient. Not eating and sleeping alot is very normal. Chemo and being sick is exhausting. But don't worry....that will change. Try to get him to understand that food is medicine...he has to keep his body strong to fight the cancer just as much as the chemo is doing. My nurses and doctors encouraged me to walk the halls (yes with my chemo pole in tow)...to get out of the room for a little bit each and every day would do him good. Ask about it. Most doctors will encourage a little bit of exercise...of course, you will need to be with him in case of falls, etc. Soon he will enjoy those little walks and get longer and longer. Once my counts came up, I was even able to walk off the floor and out onto the patio outside the cafe to feel the warm sunshine....yee ha! And remind him, with a good bone marrow match, AML is CURABLE!!! Blessings to you! You might want to also check out the book "Cancer with Joy" by Joy Huber (lymphoma). Her theme is that no one is happy they have cancer but that doesn't mean you still can't be happy...and she turns those awful side effects into "bright" side effects. It's available on my website under "specials" until the end of March: www.cancerkaleidoscope.com.

      over 4 years ago
    • GregP_WN's Avatar

      My father was just like that, except maybe a little more on the delirious side. He was so ill he didn't really know why he was there. But he was trying to crawl out of bed, wanted his shoes and pants, and one time was walking down the hallway when we had stepped out for a few minutes.

      How old is your brother? I think your doing the right things trying to keep him occupied. Maybe kick it up a notch and have more things for him to do, and more people to come see him.

      I hope he gets out soon.

      over 4 years ago
    • LisaLathrop's Avatar

      Hi again. This just came across my email and I thought I'd share (I "cut & pasted")

      Tip #3 - How To Put Joy Into Your Life Everyday

      One challenge for cancer survivors is moving from being reactive to cancer to becoming proactive towards living.

      Tip #3 - How To Put Joy Into Your Life Everyday. What if you could have it every day, not just when you’re feeling great or during holidays and other special times? What if joy wasn’t just a word on a greeting card but instead a feeling inside you? And what if it had nothing to do with the circumstances of the day, month or year.

      So how do you find joy? And how can you put it into your life?

      Setting goals helps. Creative projects like vision boards, wish lists and visualizations are a strong first step. Every great story begins with a thought, idea, theme or thesis. But then the author must dive into developing the main character, which involves understanding their motivation and core values.

      Whether it is a screenplay, short story or novel, the writer must eventually create the ou tline of the journey the main character will experience and the steps and stops along the way of arriving at the destination. Without this, the story simply remains an idea in the writer’s mind.

      If joy is a state of being you wish you had more of every day, it will remain just that...a wish or a longing for. To truly experience joy daily, you must move it from an ideal or vision by taking actions to create it.

      Source: www.wellbeyondordinary.com
      A great source that might be useful to you and your husband

      over 4 years ago
    • jennjd00's Avatar

      First of all thank you all for your responses and genuine concern. God Bless you! My brother's case is a little difficult. He has VRE, he also has Miltonic Dystrophy. They have been unable to get his bone marrow back up, or his WBC back up. He is really not allowed out of his room due to the VRE. In fact when we all visit we have to put robes, gloves and masks on. He still does not eat much as they have to give him Chlorhexadine mouth wash to help him not get mouth sores and this makes food taste bad to him along with all the antibiotics they give him, his stomach gets queasy very easily. His muscles are very weak from his MD and now being ill from chemo etc. I am just so concerned, I want to help but am at a loss. he needs something other than cancer talk, death talk, medication discussions etc. What bit of life, or light can I be allowed to bring into his room he cannot leave? I know he must feel like he is in prison. Not to complain myself, but, he is my twin brother and I am his twin sister. This is so difficult and I just do not know what to do anymore. Can the American Cancer Society do anything to help us?
      I am so sorry for rambling on like this. I just know you all are so helpful and I so appreciate it. Thank you again and God Bless.

      over 4 years ago

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