new at this hell...I am the wife

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lilli1020
lilli1020 Member Posts: 114
edited March 2014 in Caregivers #1
My husband, Doug, was dx in April, pacreatic cancer w/mets to liver. He had radiation and now waiting for chemo. He is sooooo weak, he had lost about 50 lbs. On so many meds he is in bed 23 hrs/day, hardly no appetite, and in pain a lot. They are doing all they can..he is being treated at Cancer Treatment Centers of America in Zion, Il. I have 1 daughter, 22, and both of our families live across the state or out of state. At first, so many called and visited but now that has dropped off and I feel so alone in this. It's not so much that I need help with him, but someone that I can trust to talk over some issues who understands and may give me a break because I hate leaving him alone, even for errands. I am afraid if I mention hospice, he will balk and think it's the end and lessen his hope. Also, he is a quiet, shy and very personal man and this has taken him down so quick and hard that his head is in a bad place. Anyone out there have any suggestions? I really need some help. Thanks and best of luck to all....God bless!

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  • bingles
    bingles Member Posts: 120 Member
    #2
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    Hospice..
    First of all my heart goes out to you...been there done that and its horrible.
    My husband passed away this past April 21st from Metastatic Lung Cancer....pallitive treatments were his only options and he did not want it.
    When we got back home from the hospital he was doing poorly....pain management was a huge problem for him and his appetite was horrible.
    I had the hospice talk with him and he understood what it meant and we both agreed that it was the best road to take and I am so glad that we did....he only lasted 6 weeks..but with Hospice on board it was a wonderful 6 wks...they totally controlled the pain....supplied us with every possible thing that we needed and all without cost...he was on Medicare....zero co-pays.
    They provided all medications and equipment....and physical help as well...I don't know how I would have made it with out them.
    He passed away at home..comfortable...at ease and surrounded by his family
    We didn't want for anything....other than a cure and that was not to be.
    Don't wait on the Hospice...if its warranted...get on board with them...they can make the whole horrific experience much more tolerable....my hospice even offers berevement counseling for surviving spouses....they follow up for one year.
    Those people are angels.
    Blessings to you and your husband.
    Pat
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #3
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    Been There
    I, too, have been there and my heart goes out to you. My husband passed away in Oct, 2009 from colon cancer after a six year battle. We didn't call hospice until the last month. I wish we had called sooner, but my Doug chose to wait. Our hospice did allow for palliative care, but a dr has to say the patient has 6 months or less. Since we live in a rural area there is only one hospice service available here. Some areas have more than one. Even if your husband is not ready for hospice, you might want to call and talk with them. They have services for the families as well as the patient.

    This is a very difficult time. My husband always told me that he thought my job as caregiver was harder than his. I don't know about harder, but it is really hard to watch our loved ones in pain. It is hard to believe that we will somehow be able to live without them if they don't get better. Losing them is one of our greatest fears, yet watching them live in pain tears us up. We know that we have to take care of ourselves or we can't care for them, but knowing that doesn't mean we do it. Please do try to care for yourself, though. Try to find a friend who can sit with your husband at least a few hours a week so you can get out even if it is just to go grocery shopping. If you can't find a friend, hire someone. We found that our friends really did want to help. They just didn't know how. Tell them you could use a break. Ask a friend to go to lunch or invite them over. Those hours when they are sleeping can get oh so lonely. Come here to these boards and find support or just vent. There are many here who have been there or are still there. It helps to know that you are not alone, and sadly, you are not. Take care, Fay
  • AnnaLeigh
    AnnaLeigh Member Posts: 187 Member
    #4
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    We will listen, support you and offer help
    Hi Lilli,

    I am sorry you are having to deal with your husband's illness and the loneliness that often comes with caregiving. But I am so glad you have found these discussion boards and can access all of the experience and wisdom of the members here who have gone through what you and I are currently dealing with.

    There are many home-health service providers and home-helping agencies in your state where you can hire someone to come and stay in your home while you are out running errands or just help with daily duties like laundry, grocery shopping, cooking, and cleaning. A few are - Visiting Angels, In-home services finder.com, Care pathways.com, Addus Healthcare. Just search for "Home and respite care" on your internet to find an agency that offers services in your area.

    You may want to ask the social worker at Cancer Treatment Centers of America if there are group meetings for caregivers or if they can refer you to another agency that can put you in contact with a support group. Many caregivers also find that working with a therapist can help sort out all of the stress, grief, feelings of being overwhelmed, and anxiety that seem to come hand-in-hand with being a caregiver.

    We are not professional (paid by the hour) caregivers who get to go home at the end of the day to another lifestyle and the emotional burden we carry, along with the physical burdens, can easily seem overwhelming at times. We need all of the support we can find and someone to help us deal with our emotions so we can let them all out before they become too much.

    There are so many compassionate and caring people on this board who are always willing to listen and help. We hope you will write again and let us know how you are doing.
  • lilli1020
    lilli1020 Member Posts: 114
    #5
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    AnnaLeigh said:

    We will listen, support you and offer help
    Hi Lilli,

    I am sorry you are having to deal with your husband's illness and the loneliness that often comes with caregiving. But I am so glad you have found these discussion boards and can access all of the experience and wisdom of the members here who have gone through what you and I are currently dealing with.

    There are many home-health service providers and home-helping agencies in your state where you can hire someone to come and stay in your home while you are out running errands or just help with daily duties like laundry, grocery shopping, cooking, and cleaning. A few are - Visiting Angels, In-home services finder.com, Care pathways.com, Addus Healthcare. Just search for "Home and respite care" on your internet to find an agency that offers services in your area.

    You may want to ask the social worker at Cancer Treatment Centers of America if there are group meetings for caregivers or if they can refer you to another agency that can put you in contact with a support group. Many caregivers also find that working with a therapist can help sort out all of the stress, grief, feelings of being overwhelmed, and anxiety that seem to come hand-in-hand with being a caregiver.

    We are not professional (paid by the hour) caregivers who get to go home at the end of the day to another lifestyle and the emotional burden we carry, along with the physical burdens, can easily seem overwhelming at times. We need all of the support we can find and someone to help us deal with our emotions so we can let them all out before they become too much.

    There are so many compassionate and caring people on this board who are always willing to listen and help. We hope you will write again and let us know how you are doing.

    Thank you so much. The
    Thank you so much. The burden is so heavy, but your suggestions are great. I will check some of these out. Best of luck to you too!

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