The Hospice Conversation

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leesag
leesag Member Posts: 621 Member
in Ovarian Cancer #1
First, no, I'm not ANYWHERE needing hospice care. I still plan on returning to school, cancer free, on August 22nd. However, it occurred to me that it would be easier to get honest responses from my husband if I broach the subject of hospice while I'm still healthy. (It's hard to tell a very very sick person that it would be easier on you if they went to a Hospice Center instead of home hospice care.)

How did I start talking about it? I asked him if I could ask a really hard question. He was holding me in his arms at the time. He said yes. So I said, If the time comes when I need long term care, like hospice, would it be easier for you if I were home or in hospice care? He held me for a few minutes, and I said, I know I don't need anything like that right now, but the time might come and we should be ready. I don't want you to only think of me, it will probably be harder on you.

My husband, God Bless him, sighed and said, "I can promise you that I will do what's right for everyone." (Extensive mushiness followed ;)

My husband has been my rock and soulmate for the past 13 years, and I trust him implicitly. I'm glad we had that conversation, as short as it was, he now knows that I'm okay with whatever he thinks is best.

It's a hard conversation to have and I'm sure it won't be the last time we talk about it, but the ice is broken now. Hopefully, future conversations will be easier. (Actually, hopefully future conversations won't be necessary!;)

Hugs and Health

Leesa

Comments

  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #2
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    That is a difficult subject
    I need to have a talk with my two adult daughters and like you I am thinking it will be easier if I am relatively healthy at the time. They are so emotional all the time but thanks for sharing because hopefully it will spur me into getting done what needs to be done.
    Colleen
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #3
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    Cafewoman53 said:

    That is a difficult subject
    I need to have a talk with my two adult daughters and like you I am thinking it will be easier if I am relatively healthy at the time. They are so emotional all the time but thanks for sharing because hopefully it will spur me into getting done what needs to be done.
    Colleen

    It's important to talk out this stuff while it still is far off.
    I made a point of talking to my sons and husband regarding my feelings about "dying at home". Personally, I don't want that for my husband. I don't want him (or my grandchildren!) to think of a hospital bed and me wasting away there every time anyone walks into any room in our house. Me, going home to die, isn't something I want for my family.

    My home reflects so much of who I am; I don't want to mar that for them after I am gone. But had I not made that point to my family, they would have surely brought me home to die within the comfort of my home. Now they know I would rather die in the sterility of a remote location like the hospital than leave behind an unhappy memory here where my family has always felt safe and loved and happy.
  • NCEllen
    NCEllen Member Posts: 115
    #4
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    Forward thinking ...
    ...for anyone who may need to face that decision one day. Thanks for the post - it's worth the discussion depending on the situation for each individual.
    This subject came up yesterday and my daughter and I had a chance to talk about it since both my husband and I might need to make these very plans someday down the road. My daughter has a friend who is traveling home to NC today from Florida. After failing all attempts with many treatments and chemos, her friend has chosen home hospice to be near many friends as well as immediate family.

    There is a wonderful Hospice facility near our city (uplifting, comforting, home-like setting) that I would choose instead of home care at my house. Our house sits high on a hill and it would be hard for some family members and friends to 'get up our driveway'. The drive is a little further to the Hospice House than my home, but it would be easier on them - there's a nice living room like lobby, a chapel etc.. Besides that, something tells me I would still (even at that point) feel obligated to have my whole house cleaned for visitors and the fridge stocked with food! ...I suppose it's still a little early to get on the road that heads to the bridge, but worth including in 'da family business'.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #5
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    Thanks
    for posting this Leesa. You chose the perfect way to have the tough conversation.

    I have yet to be able to bring this up, although I keep wanting to. I used to think I would only want to die at home, but lately have been thiking differently. And for the reason that I just don't want to put my kids and husband through any more hardship than neccesary. But, knowing my husband, he would sleep and camp out at the Hospice room, and although they are nice here, nothing like what it is in the States with lot's of comfy beds and space. So, it is really up to him, I guess, and I trust he will make a decision that is best for everyone, not just me.

    Anyway, I have an appointment to go and see the local Hospice place, and talk with them about details. After I see the place, I plan on bringing up the subject.

    I hope none of us ever need Hospice!

    kathleen
  • clamryn
    clamryn Member Posts: 508
    #6
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    Tough Subject
    Hi Leesa, I have been thinking about the whole Hospice thing and I keep going back and forth. One of my friends was in hospice center and it was very very nice. My friend had 3 children and they are all married. One daughter and two sons. I would go up to visit her and no one would be there. It broke my heart. So I wouldn't leave. I would stay all day and part into the evening. I couldn't understand it. I would ask where her daughter was and the nurse would say that she called and said she had things to do.

    If she would have been at home, they would have been at her house. She always had people at her house.

    But I understand your point of view too. I have been trying to figure it all out. My daughter, her husband and two kids live with me. I don't want the grandkids to remember me that way but they have seen me sick a lot.

    I guess I need to have the conversation with my daughter and see what she thinks.

    And Kathleen, I pray that not one of us need it either.

    Hugs to all
    Linda
  • jbeans888
    jbeans888 Member Posts: 313
    #7
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    Before I was ever sick I
    Before I was ever sick I said I would rather die at home then in a hospital or hospice, but now I am 90% sure I feel differently. I agree with some of the other ladies I wouldn't want my loved ones to walk into a room and be sad. I think hospice is good. They are there to help with the transition.
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #8
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    Its a tough one
    On the one hand I would like to die at home - surrounded by my "things". But I know from experience it is very hard on the family. However, going into a hospice the pressure is off the family and you have all of the medical care including drugs to hand.

    I've often given this some thought and I still can't make my mind up what I want.

    I do know that where I live we have a "hospice at home" team of nurses who bring everything to your home to make it is comfortable as possibly (including pain relief)

    But I still don't know what I want.

    Tina

    PS I do know that I will write some letters soon giving instructions about what I want - but the trouble is I don't actually know what that is!!!!!!
  • Mwee
    Mwee Member Posts: 1,338
    #9
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    great topic
    I've never thought about this and now that you bring it up, I think that I'd rather it be in hospice care. Both my parents died at home and I don't think I'd like my family and friends to associate our home in that way. AND, I know myself.... I'd feel like I needed to entertain right up to the end!
    (((HUGS))) Maria
  • sarahb74
    sarahb74 Member Posts: 81 Member
    #10
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    I discussed my wishes with my husband
    as soon as I had my first recurrence, and put everything down on paper. Then I went over it with my son, which was far more difficult. My husband isn't very well himself and I don't think he would be physically strong enough to look after me, although he seems to think he can. He's been so supportive but I watched my stepfather die from pancreatic cancer and I don't want my husband to have to go through that! I decided almost at the beginning I'd rather go into a hospice when the time comes. I've already spoken to a palliative care doctor who said she will try to get me into a hospice in the South of England where my son and the rest of my family live. I live in North Wales which is about 300 miles away so apart from my son it's a bit far for most of my family to visit. Once I got it down on paper, that's it! I'd rather just forget about it and as far as I'm able enjoy what's left of my life
  • carolenk
    carolenk Member Posts: 907 Member
    #11
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    sarahb74 said:

    I discussed my wishes with my husband
    as soon as I had my first recurrence, and put everything down on paper. Then I went over it with my son, which was far more difficult. My husband isn't very well himself and I don't think he would be physically strong enough to look after me, although he seems to think he can. He's been so supportive but I watched my stepfather die from pancreatic cancer and I don't want my husband to have to go through that! I decided almost at the beginning I'd rather go into a hospice when the time comes. I've already spoken to a palliative care doctor who said she will try to get me into a hospice in the South of England where my son and the rest of my family live. I live in North Wales which is about 300 miles away so apart from my son it's a bit far for most of my family to visit. Once I got it down on paper, that's it! I'd rather just forget about it and as far as I'm able enjoy what's left of my life

    Going "into hospice"
    Here in the US, going into hospice doesn't always mean leaving home. You have the option of being in hospice at home or being in hospice in a hospital/hospice long-term care facility. You still get the hospice drugs at home but you don't get 24 hour care...just visited by a nurse and few hours of help from a home help aide.

    I totally understand why someone would want to leave their home when they are dying so as not to taint their home with the memory of their death for their loved ones. I suppose I should have the talk, too, before there is a sense of urgency.

    Thanks, Leesa, for starting this thread.

    Carolen
  • MK_4Dani
    MK_4Dani Member Posts: 314
    #12
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    Hospice For Me:
    My hubby can't find the laundry room, dishwasher, cleaning supplies and constantly asks what is the machine I run across the carpets.....I am not sure where he would put a stick a needle of morphine....it won't work in my ear! I want to be in a place that people wait on me hand and foot, give me anything I want or need....even if I am to "out of it" to know.....kinda like a last vacation before paradise.

    I watched a friend take care of her husband with at home hospice care: it was very stressful for her. It is a full time job. God Bless the people who do choose this path.

    P.S. my husband isn't really that bad.

    Mary
  • Barbara53
    Barbara53 Member Posts: 652
    #13
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    mom and I talk around it
    Mom is about to the point of needing hospice care. As her primary caregiver, we have talked around it for months, avoiding the word hospice but talking openly about her wish to be kept "safe and comfortable at home." That's our theme song these days, and she and the home team (family, friends, neighbors) takes it very seriously.

    We will turn to hospice when I feel like I need professional help to keep her comfortable.

    Now for a laugh...Last weekend Mom had an intestinal virus and could not stop the runs. My brother the veterinarian went up to the drug store and told the pharmacist he has a german shepherd named Gretchen that needed a suppository. It worked, and helped Mom turn the corner. Who needs hospice when you can get an animal doctor?
  • leesag
    leesag Member Posts: 621 Member
    #14
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    MK_4Dani said:

    Hospice For Me:
    My hubby can't find the laundry room, dishwasher, cleaning supplies and constantly asks what is the machine I run across the carpets.....I am not sure where he would put a stick a needle of morphine....it won't work in my ear! I want to be in a place that people wait on me hand and foot, give me anything I want or need....even if I am to "out of it" to know.....kinda like a last vacation before paradise.

    I watched a friend take care of her husband with at home hospice care: it was very stressful for her. It is a full time job. God Bless the people who do choose this path.

    P.S. my husband isn't really that bad.

    Mary

    Hi Mary
    My husband is actually a nurse, which is one reason I wanted to have the conversation with him. I don't ever want him to be in a position where he has to "be" a nurse, he needs to have the freedom to jut be a loving husband. He and I both took care of his mom when she was in her last days, it is incredibly stressful for the caregivers.

    I'm like you, Room service to the end!

    Hugs and Health

    Leesa
  • carolenk
    carolenk Member Posts: 907 Member
    #15
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    Barbara53 said:

    mom and I talk around it
    Mom is about to the point of needing hospice care. As her primary caregiver, we have talked around it for months, avoiding the word hospice but talking openly about her wish to be kept "safe and comfortable at home." That's our theme song these days, and she and the home team (family, friends, neighbors) takes it very seriously.

    We will turn to hospice when I feel like I need professional help to keep her comfortable.

    Now for a laugh...Last weekend Mom had an intestinal virus and could not stop the runs. My brother the veterinarian went up to the drug store and told the pharmacist he has a german shepherd named Gretchen that needed a suppository. It worked, and helped Mom turn the corner. Who needs hospice when you can get an animal doctor?

    Funny story but...
    Barbara

    I would sort of keep that story to myself outside of this discussion board as your brother risks losing his vet license for treating a human...and likewise for an MD who treats an animal. That's just how it is FYI.

    Carolen
  • TeaLurker
    TeaLurker Member Posts: 15
    #16
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    Thanks
    After my first hospital stay (Nov. 2010, when an ER trip turned into an OVCA dx and emergency surgery, etc.), one of my first requests to my family was please to make sure I had HOME hospice, because I would never be able to bear the loneliness of the hospital again, and I needed my pets around me, too.

    Now I see how unrealistic that is, for our circumstances, and even though I hate the thought of off-site hospice, that's how it needs to be for their sake. But I keep forgetting to tell them, and now I will, so thanks for this conversation.


    In the meantime, I also have made arrangements to donate my body to science, as they say -- when the time comes, that is -- no rush!

    Since my body has cancer, only one (reputable) place wanted it. Harvard would take my brain (only), as long as I paid for the surgical removal -- and shipping! What pikers!
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #17
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    TeaLurker said:

    Thanks
    After my first hospital stay (Nov. 2010, when an ER trip turned into an OVCA dx and emergency surgery, etc.), one of my first requests to my family was please to make sure I had HOME hospice, because I would never be able to bear the loneliness of the hospital again, and I needed my pets around me, too.

    Now I see how unrealistic that is, for our circumstances, and even though I hate the thought of off-site hospice, that's how it needs to be for their sake. But I keep forgetting to tell them, and now I will, so thanks for this conversation.


    In the meantime, I also have made arrangements to donate my body to science, as they say -- when the time comes, that is -- no rush!

    Since my body has cancer, only one (reputable) place wanted it. Harvard would take my brain (only), as long as I paid for the surgical removal -- and shipping! What pikers!

    No conversation.....yet
    I have not had the hospice conversation, yet. I do not want to die at home. I want my family to have a home they can just escape to. I want to not be worried about who is going to give me a shower or whether we can get the needed medications to make me comfortable.

    For whatever illness and given the choice, I will opt to be taken care of away from home. I hope that the hopsice home allows pets or has an onsite pet. I love animals. I think having one around makes things easier. At my worst my cats have curled around me and comforted me.

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