Jack is still fighting

pattynonews
pattynonews Member Posts: 176
edited March 2014 in Caregivers #1
Well Jack still has that fighting spirit, it is getting harder he pretty much stays in bed, but he is still can communicate when he is awake, but he is weak, and tired, his breathing his slowing, we do have the nurse but you have to watch them I get some rest maybe 4 hours a night, I was alittle upset the night before with the nurse, Jack is on some pretty strong meds, and I dont want him totally sedated just out of pain and comfortable, and his meds say one of them say every 2 hours when needed and the other was every 4 hours as needed, but the night nurse was just giving him it every two hours no matter what and when we checked on him she was sleeping, and he has not been the same since that night, Im not saying it is because of that but she over medicated him so she can rest, so now the only one who can give him meds is me, and alot of these hospice nurse are not comfortable working with trachea, so I still have to do all of that, and so Im still up alot, and his tumor is draining so bad from his nose and mouth and he needs mouth care every hours, so I get upset if that is all they are doing his helping to the side commode and keeping the draining from running down him and I go in there and his nose is running, I feed him I still do alot they are just monitoring him, I might just be in set in my ways, because I have been doing this on my own a year, but have some compassion, the fluid is so foul and I dont want it sitting in his mouth or running down his face the poor guy has enought going on, and on top of all of this he has not had a bowel movement in 5 days and we have tried everything, and he has a bedsore, that is very uncomfortable and one of the nurese told us that was are last concern I was like um no, just because he is dying he deserves to be comfortable and bedsore are painful, sometimes I wonder about hospice do they try to rush the progess up because I did hear the main nurse on the phone say well he does not have much time and I dont want to send out the best bed we will send out the middle one, now, I think that was just wrong I know if it was her loved one she would want the best, maybe they just get immune to see this and there is no compassion it is just there job dont understand, but as long as Jack is here even if Im doing it all he will have the best care,

Keep us in your prayers Thank you for all your kind words and concerns
Love patty

Comments

  • SonSon
    SonSon Member Posts: 174
    bedsores and pain medicine
    Bedsores - keep that area clean, antibiotic ointment, and get him off that spot. My mother-in-law spent 75% of her last 2 weeks on one side or another because of a sore she developed on her coccix (sp?). Use towels or pillows to cushion boney joints from banging into each other.
    Pain meds - we gave the "PRN" (as needed) meds to my mother-in-law at the stated intervals. It was about HER not us...We desperately wanted her to be alert and communicating but she was in agony. I don't regret it at all.
    Being a caregiver is a selfless act - like being a mother, but for a shorter more intense period of time.
    Yes, there were things I wanted but hospice did not allow (a wheelchair to wheel her out of the apartment for a bit) but it was for the best. The personal care will be much better than any bed.
    Fatima
  • MichelleP
    MichelleP Member Posts: 254
    Patty
    My husband too had a problem with bed sores. I put neosporin with pain relief on them and it helped him a lot. Make sure it's the cream based one. I tried using the pillow so he could lay on his side but he would just toss it on the floor and end up back on his bottom again.

    What meds is hospice giving Jack? They have my husband atavan (sp?) and that was a nightmare. Then they switched to haldol every 4 hrs. They tried to increase it to every 2 hrs and I wouldn't let them. He would do nothing but sleep and I couldn't wake him for food or water.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    Prayers and Hugs
    In many ways we were blessed that my husband went so quickly at the end. I was the one who gave my husband meds. I did try to cut back on the painkillers for a short period because he didn't like the out of it feeling. One of the nurses from our church explained that the feeling was probably more from the disease than the morphine. We went back up so he would be more comfortable and didn't notice much difference. We had the advantage of a parish nurse and also several nurse friends. I could ask them about the care. Also ask Hospice if the best bed would help with the bed sores. My husband had a mattress pad that inflated and deflated in different spots all the time. He said that felt good. I would think you could demand the better bed if you want it.

    My prayers continue to be with you and Jack. I know you are a worrier like i am. Just try to put some of that worry in God's hands. Fay
  • mr steve
    mr steve Member Posts: 285
    Patty
    You and Jack are in our prayers.

    (HUGS)

    Steve
  • mrsgeb
    mrsgeb Member Posts: 32
    Patti,
    When my husband

    Patti,

    When my husband developed bedsores hospice provided him with an airflow mattress that has made all the difference in the world, insist that they provide you with something like it…there is no reason for him to be any more uncomfortable than he is.
    My husband is also on Ativan along with morphine to help with his agitation. It simply does not work and I have asked for a change in meds. I know it is hard, that you want Jack to be there with you and to be able to have conversations with him. My husband’s doctor actually spoke to me on Monday about perhaps sedating him more because he is so miserable. I realized I wanted him awake and alert for me and that may not be what he wants, so I asked him and he told me that he is just so tired of the pain and confusion that he would like to sleep a little more mostly to escape the pain. Is it possible for you to ask Jack what he wants?

    My thoughts and prayers are with you Patti….I know how hard this is…
    Sherry
  • trish07
    trish07 Member Posts: 138
    Patty, no one can take
    Patty, no one can take care of Jack like you. I think when nurses lose their compassion, they should do something else.

    I watched the video you posted just recently of Jack playing the drums and I believe it was you playing the tamborine. It was so heartwarming and so sweet that you take the time with all you are doing to post such special moments.

    Praying for you and Jack,

    Trish