Pain control and hospice help

jim and i
jim and i Member Posts: 1,788 Member
in Head and Neck Cancer #1

Jim's pain seems to be increasing at a faster rate lately. In the past week I have had to give him a dose of pain meds in late afternoon. Previously he only needed meds tp sleep. The week before last he would get pain when he moved  around but usually if he rested it eased off. Last week he had to have pain meds around  6 or 7 PM because the pain would not ease off. Today I had to give pain meds at  6pm then at 10pm he was in so much pain and wheezing bad so I gave him more meds. During all this I have been fighting with the insurance over paying for the meds and getting refills when needed. Would hospice handle this? Should I ask the doctor to call them in or wait for him to suggest it? I don't want Jim to suffer but calling in hospice is like saying to him I have given up. How do I bring this topic up with him? Any suggestions? Advice? Please help.

Debbie

Comments

  • jim and i
    jim and i Member Posts: 1,788 Member
    #2
    New picture is of Jim and

    New picture is of Jim and Tebow watching the playoffs for Super Bowl Laughing

     

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #3
    Hospice

    I am sorry to hear tht Jim's pain is increasing and calling hospice doesn't mean the end is near.  My husband is on in-home hospice and has been since September 2013 and they (Medicare) pay for everything that has to do with the cancer.  They provide Joe's pain medication, his thyroid medication, ambien for sleep, nausea medication and his tube feeding nutrition.  His medication comes Federal Express and we have to be here to sign for it.  That is because on day they delivered it to the wrong address -- across the street from us and they have been our neighbors for years so it wasn't really a problem but due to the pain medication everything now has to be signed for.   In some states you pick it up from a pharmacy (my uncle would go once a week and get my aunt's medication -- she was on hospice).  Each hospice is different in how they work with you.  They want the patient to be comfortable.  I wish my husband only needed pain medication once or twice a day.  He is on pain medication every three hours.    And even that doesn't hold him but he won't let them increase his pain medication.   

    Once you go on hospice, if say Jim was to fall you would have to call hospice before you could call an ambulance at least with our hospice that is the case.  Our hospice nurse comes once a week to check on Joe.  Actually our doctor said that they would come every other week, but that's not true.  And when the time comes and they are needed more, they come.  So far I don't have any complaints about hospice.  Our nurse is great and when she can't come, there are others that come and they have been good.  Also a social worker comes once a month to talk with us to see how things are going and how I am coping.  And when you need more help, like an aide to bath them, they send someone.  And if you need a break then they will put them in a hospice for up to one week.  We were told the charge would be $35/day. 

    Also they could discharge you from hospice if they feel you don't need it any longer.  Something we are wondering about because Joe is doing so-so.  Able to do things for himself, no breathing problems (well when he does things like walk in the yard, light yardwork, etc.), although once he went on hospice, oxygen was moved into the house.  There are times when he needs it, but refuses to use it.

    Wishing you peace and comfort -- Sharon

     

  • katenorwood
    katenorwood Member Posts: 1,912
    #4
    Hello Debbie

    First off that is a very nice picture of Jim and Tebow.  I think that the hospice idea is a good and sound one.  No, it doesn't mean you or Jim have given up.  At least discuss it with your doctor...can be your primary.  And then call around to different hospice providers in your area.  They can give you all pertinant information.  And yes they handle most if not all the med ordering for you.  And they also can do the billing.  This would take such a heavy load off the two of you honestly.  And like mentioned above by Sharon, check county level also to see what the rules are in your state for this.  But I think most of it is handled through medicare.

    In Minnesota they handle the class 2 and 3 pain meds a bit different.  Can't be mailed.  But I'll bet you hospice could deliver them for you.  Things change up so much, that I don't want to say to much on this subject.  Again, the best way to handle it is to check with a few providers and you guys choose whats right for your situation.  Hugs sent !  Katie 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    debbie, i'm sorry jim's pain

    debbie, i'm sorry jim's pain is getting worse.  if hospice can help with the pain then i'd use them.  it doesn't mean you are giving up, it just means the pain is worse.  saying prayers that jim's pain can be brought under control.  you could mention it to jim as pain control.  i'm sure you'll come up with a way.  God bless you both.

    dj

  • hwt
    hwt Member Posts: 2,328 Member
    #6
    debbiejeanne said:

    debbie, i'm sorry jim's pain

    debbie, i'm sorry jim's pain is getting worse.  if hospice can help with the pain then i'd use them.  it doesn't mean you are giving up, it just means the pain is worse.  saying prayers that jim's pain can be brought under control.  you could mention it to jim as pain control.  i'm sure you'll come up with a way.  God bless you both.

    dj

    Debbie

    Unfortunately, no one seems to know that it's not the old hospice that we grew up knowing about. Perhaps you could find an article on how hospice can now be a temporary care situation used more frequently. It may give you some ideas on approaching the subject or you could ask the doctor to bring it up with the mention of hoping it is temporary.

    I know how hard this has to be for you and want to remind you to take a little time for yourself too, even if it's just an hour or two.

    Hugs

  • jim and i
    jim and i Member Posts: 1,788 Member
    #7
    hwt said:

    Debbie

    Unfortunately, no one seems to know that it's not the old hospice that we grew up knowing about. Perhaps you could find an article on how hospice can now be a temporary care situation used more frequently. It may give you some ideas on approaching the subject or you could ask the doctor to bring it up with the mention of hoping it is temporary.

    I know how hard this has to be for you and want to remind you to take a little time for yourself too, even if it's just an hour or two.

    Hugs

    calling in hospice

    Thank you so much hwt. I went to our local hospice page and read quite a bit about services offered and testimonials. I then was able to bring the subject of Palative care through hospice to Jim. We both cried and promised each other to not give up the fight, then he agreed to call them in. So our plan is to call our oncologist on Monday to request this service. The main thing we both want is pain control without fighting the insurance company and less stress for me. I need someone I can call in the middle of the night if the pain meds are not working. Something I was unable to do last night. Thanks for your help and God Bless you.

    Debbie

     

     

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #8
    Right decision

    Debbie, it is the right decision.  Calling hospice doesn't mean what it used to mean -- end of life.  Hospice has been a great help to us over the last 5 months and I hope your doctor can get it set up immediately for you.  Ours did.  You may need for your doctor to go ahead and call in more pain medication for Jim while you wait for hospice to get everything you need.

    Wishing you peace and comfort -- Sharon

  • KB56
    KB56 Member Posts: 318 Member
    #9
    Hospice

    Debbie, I'm really sorry Jim's pain continues to get worse.  3 years ago my father was diagnosed with cancer and hospice was an unbelievable help for my mom (and Dad).   They would really be a big help in managing Jim's pain and with other things as well.   

    I wouldn't hesitate to contact them to see what they might be able to help with.   i'll be thinking of you guys for sure and hope Jim is able to get some relief with the pain.  

    Keith

  • Hondo
    Hondo Member Posts: 6,636 Member
    #10
    Hi Debbie

     

    My Wife and I have talked about it for me, and I told her the only thing I ask is to let me pass away at home and not in some hospital room or place I do know. As for pain I do everything myself right now because I can,  but I have found that some days I need more pain meds then other days and at night, not sure why. Talk to Jim and ask him what he wants you to do; when the time comes he will let you know. Also it is very important to just Hold him, there are times I need my Wife to just hold on to me. I don’t know why but holding her helps me to deal better with the problem of pain and depression. Maybe in holding her I get strength through her, I don’t know all I know is it helps me. As always you and Jim continue to be in my prayers.

     

    God Bless

    Tim Hondo

  • jim and i
    jim and i Member Posts: 1,788 Member
    #11
    Hondo said:

    Hi Debbie

     

    My Wife and I have talked about it for me, and I told her the only thing I ask is to let me pass away at home and not in some hospital room or place I do know. As for pain I do everything myself right now because I can,  but I have found that some days I need more pain meds then other days and at night, not sure why. Talk to Jim and ask him what he wants you to do; when the time comes he will let you know. Also it is very important to just Hold him, there are times I need my Wife to just hold on to me. I don’t know why but holding her helps me to deal better with the problem of pain and depression. Maybe in holding her I get strength through her, I don’t know all I know is it helps me. As always you and Jim continue to be in my prayers.

     

    God Bless

    Tim Hondo

    Thanks

    Thank you Hondo,

    I found out that the insurance finally approved Jim's pain meds to be paid for so that is a huge relief. I was Just upset that his pain meds were running out and we did not have the money to pay for them. Now we know he can get them and they are paying for them, things look better. We have decided to wait and pray for God's guidance on when to ask for help. No matter how many people say, calling hospice isn't admitting defeat, it still seems that way. Thank you so much for your prayers and support.

    Debbie

     

  • Crazymom
    Crazymom Member Posts: 339 Member
    #12
    pain

    so sorry to hear about the pain.  I am sending prayers your way.  Ann

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