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Thread: Dad on hospice and I live far away

  1. #1

    Dad on hospice and I live far away

    My 72 year old father was diagnosed with stage 4 lung cancer with bone metastasis in April of this year. Three weeks into aggressive chemo, he came down with a life threatening infection and ended up in the hospital - seeing his horribly weak state, we all determined together that it was time to stop this. Before the end of his weeklong hospital stay, he decided to halt treatment and go into home hospice, wanting quality of life above all else. Without the chemo, he is feeling better and stronger every day, but surely there will soon come a time when he is no longer well.

    My problem is this: my parents and brother live in Wisconsin, and I now live in Los Angeles. Although I am single, I am 27 and have a life and a successful career there (not to mention an apt to pay for). I work freelance in the TV/film industry and cannot work remotely. My dad has plenty of caregiving support here, but I still cannot bear to leave his side. At the same time, I have been here for two weeks and am beginning to feel utterly useless, unable to make forward progress in my life from here. How do I go back to my home without feeling extreme guilt? What would you do in this situation?

  2. #2
    Administrator Top User lisa1962's Avatar
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    Sorry to hear about your Dad's diagnosis and his difficulty with treatment. I know how sad and concerned you are.

    Every situation is different. Perhaps talk with your Dad. Being he has the support required right now, he probably is concerned about you.

    When my own Mother was diagnosed and going through treatment, i was fortunate enough to be in a situation, as challenging as it was, to make the trip to be there for her every couple of weeks. That is not possible for everyone so you need to weigh what you can and can not do living so far from your family. You can support him from afar, talking with him via phone, keeping in touch with your brother and Mom. Maybe even arranging grocery deliveries for them. You will be amazed that even doing sumple things like that can be a huge help.

    When the time comes, unfortunately that an evident decline is quickly approaching , perhaps you can make a trip home.

    Remember, guilt is a real emotion. Your Dad will not want you to feel quilty. His desire is for you to live your life.

    Ask your Mom what she needs, spend time with your Dad before you head back to California.

    We are here to support you and help answer questions so please feel free to post anytime.

    Lisa

  3. #3
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    Hello LA Girl,

    The very first thing you must realize is that; “Dads take care of children.” (Not the other way around!) I'm sure your dad is still in the "taking care of mode." (Us old guys do that.)
    And your ‘dad’ is sick. You can’t change that and you probably can’t make it better either. But you can love your Dad and you can tell him so. Going back to your life is necessary and I’m sure he will want you to. SO, don’t beat yourself up over it. It is OK to say; “See you in a month(or what ever).” He will understand.

    How do I know all this? I’m 78, Stage4 NSCLC and have a son who lives in Glendale, Ca. While I live in Washington State. He has a life and business that he must take care of, and I sure understand that. It is great when he visits, but also good to see him go “back to the world” (Vietnam speak). I am positive that your dad understands that you can’t just stop the world turning, (or the apartment rent).

    What you are experiencing is “caregiver guilt” and it IS NOT HEALTHY. You must put all of this in perspective. Relieve your mother (I assume) and brother when you can; call often, say; “love you” to your dad and accept that changes in your life are inevitable.

    Oh, we would relate better if we knew your name and your father’s name also.
    Take care of yourself!!! And listen to Lisa!!

    regards, zim (aka icaps3)

  4. #4
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    Hi There,

    I completely understand. My mum has ended all treatment and is stage IV. She also had a week in hospital, due to an enormous infection from chemo. In her case, she has had three different types of chemo, radiation and immunotherapy and she has had enough.

    I am in Australia and live 1,100km from mum. I see her when I can, but I call her every day. We chat, sometimes for just a few minutes (she also is recovering and although weak, is regaining quality) and sometimes for an hour.

    She understands that I have to work and often states how proud she is of me and what I do. I do feel guilt, but I also know that I have to live my life and she would not have it any other way.

    Since her diagnosis, we have had some great times together when we are together. We have had some time away on holidays, and I have flown up, most recently for her 75th birthday which was fabulous.

    So, I can only share with you how I do it, and it is with daily communication, I have consent to talk to her caregivers so I know exactly where she is up to, I tell her everything that I am up to (mostly!) so that she is included in my life and when I do get to see her, we have great times.

    Hang in there and best wishes to you and your family.

    Nell

  5. #5
    Thank you so much Lisa, Zim, and Nell. So comforting to hear perspectives from both sides of the equation. You are correct, he has often stated that he wants me to go back and live my life, he is proud of what I’ve accomplished and would never want to see me give it up. It is just so, so hard to leave.
    Zim, my name is Rachel and my dad’s name is Rich.

  6. #6
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    Well ‘HI’ Rachel,

    See, you are already feeling better!! Hug your Dad, and tell Rich that he is not alone, even if I AM a lot older than he is.

    Regards to you all,
    zim

  7. #7
    Well, I gathered up the courage to return to LA on the 8th. I've been very stressed since then, even though my dad seems to be faring ok, given the circumstances. Hospice seems to be doing a fairly good job keeping him comfortable, and the steroids he's taking are giving him a good amount of energy and even bringing his appetite back. On the other hand, I feel terrible. I miss him so much all the time, and I spend a lot of time worrying about how he's doing at any given moment. I'm afraid to have to leave my job on a moment's notice if things go south. And most of all, I miss being physically close to him, ie. going for walks around the block, holding his hand, watching TV together, crying on his shoulder, etc. I've only been away for 2 weeks, but the pain is horrible. I am sad that I'm missing all this time with him when he is still feeling good and moving around and living a semi normal life. Work has been a nice distraction, but it doesn't make the pain of being without him any less potent. What do you suggest for me?

    thanks all
    Rachel

  8. #8
    Administrator Top User lisa1962's Avatar
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    Rachel,

    Sorry to hear you are struggling and i certainly understand.

    When my Mother was so ill and it was down to a matter of time, being almost 200 miles away, i too couldn't focus on anything and was so very sad i couldn't be with her each and every moment. While i was able to get to see her every other week, it just didn't seem enough. With this said, she wanted me to be at my home. It disturbed her knowing that her condition made me feel so helpless. I called every day, while she was too weak to even speak, my Dad and Sister always put me on speaker phone. I emailed pictures and that made her happy.

    You can only do so much but remember your Dad loves you. Find strength you do not know you have and make each day a one that he is proud of. Make a plan to go see him. If you can make that plan, it may help.

    Lisa

  9. #9
    I was able to be with my Dad. Our son, who loved his grandfather so much, had to travel a lot and he was upset he could not see him as often as he wanted to. My Father totally understood and was happy to hear from our son on the phone very often. It did happen that our son made it back to see him unexpectedly. My Father could no longer talk but knew David was there. David did the talking, Dad listened. He died a few days later but, even tho David was able to be there, those phone calls meant a lot to both of them
    His fight is over. How brave he was. 47 years of love.

  10. #10
    Senior User
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    SO….Hello Rachel,

    It has been a while since we’ve heard from you and about Rich.
    We are interested in your welfare and Rich’s status, so a quick post would be welcome.

    I hope that your “life in the big city” is as stable as it can be under the circumstance. AND I hope that you can get back to your Dad’s side soon. ‘Maybe a long weekend?

    Please let us know..
    Regards, zim

 

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