Daughter beginning Hospice

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sparkie
sparkie Member Posts: 23

Do you have any advice for someone just going on hospice?

I've been lurking here for years, but have rarely posted.  Our DD has been fighting the beast for 8 years with no remission.  I've tried to get her to come here, but she won't.  I think it's just too scary for her.  She's been in the hospital now for two weeks--recovering from a very serious blood infection--and she's coming home in a couple days and signing up for hospice--with a pain pump. She's really scared.  She has brain mets (lesions too numerous to count), bone mets (neck and spine), and lung mets.  Lung mets have shrunk and are not a problem right now, but she also has Lupus.  For some unknown reason, radiation in Lupus patients causes a lot more scar tissue than normal, so one lung is almost useless.  She's had many Cyberknife treatments, but because of the scar tissue problem, she can't have WBR.  (Cyberknife causes some scar tissue too, but not nearly as much as WBR.)  She's weak and tired, and we're all scared.  She has three kids, 16, 12, and 9.  She and the two younger ones live with us.  The older one lives nearby with his dad.   (He's not the dad of the two younger ones.)  The two older kids understand what's happening, but we're not sure the 9-year old does.  They're all in therapy.  

It's a very sad time for us.  I've followed so many of your stories over the years, and I feel like I know many of you.

We don't know exactly what hospice can do for her/us, but we know we need help.  She has a great medical team.  Her oncologist is wonderful; he started this particular hospice program.  Hospice will do her intake when she comes home in a couple days, and I suppose we'll have many of our questions answered.  But we'd appreciate any advice here as well.

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Comments

  • ElaineD
    ElaineD Member Posts: 2,265
    edited May 2009

    So sorry to hear of how you are all suffering. I'm sure she'll get a huge amount of help from hospice, after which she will hopefully not be so scared. Such tough times for your family-I have no advise, but just wanted to wish you all well. Perhaps in time your daughter will want to join us-there's a great bunch of gals here, and there's always someone who can answer questions, so I think that joining us would be a great idea. It's more of an inspiring, supportive and helpful site, and it might comfort her to know that many of us are facing similair struggles, and can empathise totally with her fears. If not, do keep us updated-fighting this beast takes it's toll every bit as much on the family as it does on the patient. Hugs to you all,x

  • DianeE
    DianeE Member Posts: 176
    edited May 2009

    My heart aches for all of you.   Hospice is a wonderful resurce that will be able to help all of you as you face this next journey, including the kids and getting them connected with people that can help them emotionally.  Locally, our hospice also has a residence where patients can spend their last months under 24 hour care.  We used Hospice for my Mother - in -law and their invovement is what got us through.  I will be praying for all of you.

    Diane

  • kmccraw423
    kmccraw423 Member Posts: 3,596
    edited May 2009

    Prayers for your daughter and her whole family.  Also a guardian angel to watch over her and comfort her.

    Angel_Women.jpg GUARDIAN ANGEL picture by ANGELS

  • Alpal
    Alpal Member Posts: 1,785
    edited May 2009

    Oh Sparkie - I am so sorry about what all of you are going through. I lost my DD in late 2006. We didn't call Hospice until a few days before her death (she was on treatment until a week before), but they were wonderful. She wanted to be in the hospital at the end and they made all those arrangements, even down to arranging for the ambulance. After her death, they continued to check on all of us, suggest mtgs. and support groups and tell of us programs for our DGD (who was also 9). This support continued for 2 years. Please continue to post, we are all here for you. If you need support from someone who has been there, feel free to pm me.

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited May 2009

    I've often heard Hospice families say that earlier interaction with them was very beneficial to the patient (pain management, more intensive care, widening of support services) and the family. 
     
    I will keep your daughter in my thoughts, as well as your family. I'm glad you de-lurked to receive our support during this time and after.
     
    Tender 
  • spar2
    spar2 Member Posts: 6,827
    edited May 2009

    Sparkie, so sorry your daughter and whole family is going through this.  My heart is just breaking.  She will be in my prayers.  I know the hospice nurses I have dealt with not only make sure the patient is as pain free as possible, they bath and counsel and sometimes depending on the amount of time they almost become like family.  Please come here often.  We care and there are so many knowledgable women.  Let us know how your daughter does.  gentle hugs. Sherry

  • luvtotravel
    luvtotravel Member Posts: 933
    edited May 2009

    I am so sorry Sparkie.  Hugs to you and your daughter and family. 

  • Irina
    Irina Member Posts: 987
    edited May 2009

    I'm so sorry. PRAYERS and (((HUGS))) Hospice can be very helpful for family and patient. After hospice care many patients now going to remission, miracle is around as

  • NYCarol
    NYCarol Member Posts: 347
    edited May 2009

    My heart goes out to you.  I am so very sad for you and your family.

    Hospice was a wonderful resource during the last month of my Mom's life.  They have many services to offer, including just helping you with laundry, housework, errands, etc.  My advice would be to use the services so that you can spend more time with your daughter.  I'm sure they can help with talking to the 9 year old too.  Your daughter's big concern at this point is probably pain control, and Hospice can take care of that. 

    Prayers and hugs,

    Carol

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2009

    I am so sorry for your family.  This has to be so hard.

    Hospice is amazing.  You will be surprised how much and how varied the support they can offer to your daughter and the whole family.

    My prayers are with you and your daughter and her children,

    Bethie

  • LRM216
    LRM216 Member Posts: 2,115
    edited May 2009

    Sparkie, my prayers, strength, and love to you and your daughter, and the rest of the family.  May God bless you all.

    Linda

  • Debs-husband
    Debs-husband Member Posts: 19
    edited May 2009

    Sparkie,

     I just read your post and got chills with how many parallels my wife Deb and I have to your situation.  We have 4 kids, 13, 12, 10, and 3.  She has been fighting the beast for 3 1/2 years now, and has been in hospice now for the past almost 2 months.  Hospice is WONDERFUL.

    A little background: since the initial diagnosis, she has had mets to several places in her bones, including lesions all throughout her spine which required 2 major back surgeries in the last year and a half (L4-L6, and T8-T10).  She's had numerous cyberknife treatments as well, and most recently, found mets to her liver and and brain.  The nerve damage (likely from the lesions in her spine) has also removed her ability to use her legs completely.

    Before she started hospice, she was not given very long but as I said, she's now been in hospice care for almost 2 months now, and according to her, this is the best she's felt in years (now that she's no longer undergoing chemo or radiation).  Our prayers go to you and your daughter and family.

     Rob

  • sparkie
    sparkie Member Posts: 23
    edited May 2009

    Thank you so much for all your thoughtful and caring responses.  DD came home from the hospital yesterday, and hospice came a couple hours later to do the intake.  DD is still very much in denial; we thought for a heart-stopping moment that she was going to decline their services when they mentioned that the focus of hospice was comfort only.  We assured her that her treatment (oral chemo) would continue.  We know that the chemo at this point is just to slow the beast and provide some relief, but she's very much depending on the chemo to keep her alive for a long time still.  It's hard.  We want her to plan to live and prepare to die.  (I hope you understand what I mean.)  She won't even talk about death--or allude to it in any way.  She finally completed an Advanced Directive, but she won't even approach the subject of how/where she wants to die or anything beyond that.  So we're all in limbo, just trying to keep her comfortable and at peace.  She's very agitated much of the time, and alternately docile (sleeping a lot) and combative.  Sometimes she can barely walk or talk; other times she's quite mobile and loud.  I'm sure the brain mets, meds, and raw emotions all play a part.  This is hard on the kids.  They love her, but they prefer it when she's in the hospital where they feel she is well taken care of and they don't have to see her decline.

    I still don't know all that hospice can do for us, but I suppose that will unfold as they visit and we get to know them better. 

  • Debs-husband
    Debs-husband Member Posts: 19
    edited May 2009

    Sparkie,

    One of the most valued services for us from the hospice care we're getting is the social worker they've assigned to us.  We've had weekly discussions with her about many things that were incerdibly difficule to talk about, but now that we've faced them and talked directly about them, they've behind us and we're able to move forward. 

    When I say difficult, I mean things like burial/cremation plans, funeral plans, who's going to help take care of the kids when/if she dies, what are our thoughts on remarriage someday, etc. etc.

    I like the way you put it, "plan to live/prepare to die".  Very similar to how our social worker put it, "hope for the best, but plan for the worst".

  • LRM216
    LRM216 Member Posts: 2,115
    edited May 2009

    Sparkie and Deb's Husband - Oh my God, my heart breaks for both of you and your loved ones.  I wish I could just wave a magic wand and make all the ugly disappear.  There but for the grace of God go any one of us.  Please know that you, your wife and daughter, and the children are in my prayers.  May God give you strength and wrap his arms around you in this most troubling of times.

    Linda

  • sparkie
    sparkie Member Posts: 23
    edited May 2009

    Rob and Linda (and all who have responded).  I just realized how much more real you and your stories have become to me as I gave up lurking and began to communicate with all of you.  My heart goes out to you as you battle the beast. 

    Through this forum a couple years ago I learned about Camp Kesam, a week-long Summer camp for children of cancer patients--or of a parent who has died from cancer.  Last June, for the first time, our DD's two younger kids got to participate in the camp.  (The oldest chose not to go.)  They had a wonderful time, and were so excited to meet other children who understood what they were going through.  The camp is run by college students, and there are chapters all over the country.  In a couple weeks we're going to a potluck reunion, where the kids will get to reconnect and meet with kids new to the program.   Their website is http://www.campkesem.org/site/c.jvI0ImN0JuE/b.2466361/k.BD89/Home.htm.

    Rob, DD's hospice nurse called today, and I asked about a social worker.  She assured me we would be getting a call within the next few days.  Thanks for the heads up; we're looking forward to it.  It looks like hospice will be a welcome addition to our family as it has been to yours.  I'm so glad that you've been able to work through many of the issues.  

    I will pray for you and your families!

     

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2009

    Oh sparkie...I am so sorry to hear this.  Your post hit me in the solar plexus...I cannot imagine how it must feel to be losing your child.  I'm so glad you came out of lurkdom; even though I have not been in this position, I know there are others here who have and who may have word of wisdom for you!

    Sending loving thoughts to your DD and much energy to you and your family.

    I wish you peace,

    Peggy

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2009

    Just checking in to see how you're doing...hugs to you.

  • Analemma
    Analemma Member Posts: 1,622
    edited May 2009

    Oh, Sparkie, I can't imagine your grief as you face the death of your child.  The world isn't supposed to work like that.  Your grandchildren are very lucky to have you to help them through this time.

    A while ago, someone posted a conference to a seminar on Living Beyond Breast Cancer, about death issues.  It's full of all sorts of information.  Here's the link to the pdf:

    http://www.lbbc.org/data/transcript-file/LBBCendoflifeconcerns08.pdf

  • sparkie
    sparkie Member Posts: 23
    edited May 2009

    We're all mudldling along, learning as we go.  The hospice nurse (sub) came today, and is returning later today to check on some things.  She was great.  The social worker (also very nice) came today for the first time.  DD was communicative at first, but as the visit wore on, she 'checked out.'  We're not sure if some of her meds kicked in, or if she just chose to leave the conversation.  I suspect a little of both.  She really doesn't want to deal with the issues. Today's was an 'on-call' social worker; the one assigned to her will visit next week.

    DD was self medicating, per her doctor's okay, but the hospice nurse doesn't feel she should any more, due to her confusion.  We agree.  Fortunately, DD was okay with that.  (Phew!)  She's on a pump for pain meds, so we don't have to worry about that anymore.  

     Analemma, thanks for the link.  I just scanned it briefly, and it looks like just what I've been looking for.  What a great resource!

  • sparkie
    sparkie Member Posts: 23
    edited May 2009

    I just finished reading this article recommended by Analemma.  It's very straightforward and full of great information.  Thank you so much!  I see there are a lot of recommended websites in the article as well; I'll give them a look soon. 

    The article mentions confusion in patients with brain metasteses.  DD has brain lesions too numerous to count, and the confusion and agitation is taking its toll on all of us--especially DD.  She alternates between between sleeping for hours (she became completely unresponsive during the hospice social worker's visit yesterday), and demanding that we take her places.  She's wanting to do things she did before she became so sick--like shopping and baking, etc.  She's really not able to do these things, but she doesn't seem to know it. (She wants a new outfit, a manicure and new hair color for Mother's Day, so we're going to try to take her shopping today (Sat.) using a wheelchair; I'll let you know how it goes.)

     I'm hoping some of the recommended reading will address this issue in depth, as we're really struggling to deal with this.   

  • luvtotravel
    luvtotravel Member Posts: 933
    edited May 2009

    I hope that you were able to get your DD out and about and she got her desired make over.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2009
  • sparkie
    sparkie Member Posts: 23
    edited May 2009

    I took DD and granddaughter shopping (in her wheelchair) on Saturday.  DD bought several new outfits.  Then my DH left her at the salon to get her manicure/pedicure, with instructions to call us when she was through--and not to go anywhere in the meantime.  When she finished, she called to tell us that her friend would pick her up and bring her home after they stopped and got some apples.  Three hours later, they showed up with a huge array of groceries.  She didn't even have her wheelchair with her for this foray.  On Mother's Day, our whole family was together.  We took her to church in the wheelchair, and she was able to chat with a lot of her friends.  We were planning to get takeout and bring it home.  DD insisted on buying the whole dinner, and also insisted on going in and ordering in person.  So her sister took her to get the dinner.  She really overdid it.  That night, our younger DD checked on her when she went to bed, and found her collapsed on the floor and pretty much unresponsive.  It was very scary, but fortunately the kids were already asleep and missed the whole drama. 

    We sat with DD in the ER the whole night, while she talked and talked and made no sense.  They kept her one day for observation, then sent her home.  We have no idea what happened.  The doc thought she may have OD'd on one of her meds, but she's on a pain pump and we've been dispensing her other meds, so that's not possible.    Anyway, she's back to her (new) normal now.

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited May 2009

    I have reacted that way and it was simply a UTI and it causes some mental problems too.  I found that I was overmedicated as in taking too much overall, yet when I reduced pain meds, I got back "me" not "doped up me" I still was in a lot of pain.  No winning.  I may have to go to hospital and try a different pain medicine.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2009

    I am so deeply sorrry. 

    I am not a stage IV girl, but I have experienced Hospice for my mother, and that is what caught my eye from your post. 

    They were wonderful.  They took over and took care of everything.  My dad was in a haze from the sheer insanity of it all.  They gave us spiritual care, made sure every one of my mother's needs were met, did all of the funeral arrangements for my mother (except music and readings.  I had some very strong feelings on what belonged there!). 

    I'm reaching out to give you a hug, and hope you can feel it.  I'm going to pray for peace for the entire family. 

    Love and prayers, Deb

  • sparkie
    sparkie Member Posts: 23
    edited May 2009

    Last night (1 AM) the lab called DD to tell her she had another blood infection.  Then a hospice nurse followed up with a phone call, and told DD it was life threatening and they would send someone to rush her to the hospital.  Scared us all.  (But we've been told that hospice patients aren't supposed to be running back and forth to the hospital.)  After talking further with both the hospice nurse and someone from the lab (who consulted a physician there), and determining that DD didn't have any of the symptoms of blood infection (including fever), we decided it could wait until morning--after the kids were off to school.  This morning we got a call from DD's primary-care doc and he assured us the blood infection this time was most likely skin contamination.  And DD's regular hospice nurse assured us we made the right decision.  But the question lingers--how can we know what the right decision is?   Once on hospice, we're supposed to rely on them, but in both cases (last night and last weekend), the on-call hospice nurses left it to us to decide what to do.  I suppose it's a liability issue, but it sure makes for some tense moments and hard decisions. 

    For now, DD is still home, and doing fairly well.  She even went with me to her son's baseball game this evening, then helped fix dinner!   :)

  • pookie61
    pookie61 Member Posts: 257
    edited May 2009

    Sparkie,

     Bless you for taking such good care of your daughter and your entire family.  It is wonderful to hear that your dd is able to participate in some activities that she enjoys.  Thanks for the information about hospice.  I can imagine how difficult it would be for my parents and husband to make such difficult decisions, especially in a household such as yours with young children. 

    Have a wonderful weekend.

  • ilovemysweetmomma
    ilovemysweetmomma Member Posts: 117
    edited May 2009

    Hey Sparkie, it sounds like despite everything you all are keeping your DD's spirits up.  THat's great.  In terms of going to the ER on hospice, it is your alls decision.  It depends on how aggressively you want to treat things.  Luckily it sounds like the blood sample was jus contaiminated..did they say they were going to redraw the lab?  Have you all been able to get in touch with a social worker yet?  Bless you all,

    Megan

  • sparkie
    sparkie Member Posts: 23
    edited May 2009

    We did meet and talk to a hospice social worker, but haven't yet met the one assigned to us.  Fount out today that she's been out of the country and contracted some illness from which she is recovering!  :-|     The hospice nurse came today and started a dialogue with DD about taking care of business--especially making arrangements for her kids.  She approached it very gently and DD was receptive.  So that's a start.

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