Update
It's hard for me to decide how much to share about what is happening with Michael. His decline has been very swift and painful for me.
It is hard to find a balance with the pain meds. If I give him the amount of medication the hospice wants me to give him, he is completely unresponsive which means I can't get him to eat or drink anything. If I decrease the meds, he is somewhat lucid and can recognize people and communicate a bit. But with that comes the problem if him trying to get out of bed on his own and he is still somewhat disoriented and very weak. Unfortunately the decision is going to be out of my hands very quickly. It is becoming increasingly difficult for him to swallow pills. I will probably have to give him a fentanyl patch tomorrow.
This disease is wretched!
Comments
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my heart is heavy for you
Hi Phoebe,
My heart is heavy for you and what you're going through with Michael. What you wrote sounds like what I just saw in my father in law. I just got back from spending the day at my in-laws' house. My father in law is in the very advanced stages of Alzheimer's. My mother in law had to go somewhere today, so I went and stayed with "Pa". What you said about the meds controlling if he sleeps or is more lucid and tries to get up sounds familiar. If he were to get up, he'd fall down. I was worried while I was alone with him that he might try to get up, but he didn't, thankfully. I sat by his side most of the time. Hopefully, someone from hospice care will be coming in tomorrow to help.
Some similarities here, but definitely different as my father in law is 81 years old and has Alzheimer's not cancer (although he also recently had merkel cell cancer).
I'm so sorry you're having to go through this. Yes, this disease is so very wretched!
I am praying for you right now as I type this. My dear, this is probably the hardest thing in life you'll ever have to go through. I wish I could snap and make everything better, but such is life sometimes. Life can be so very hard.
I'm praying for comfort for Michael and for you...strength, restful nights, and courage to face the days.
Hugs,
Lisa0 -
Phoebe
Dear Phoebe,
My words are inadequate. I think of you often and say a pray for you and Michael when I think of the two of you. You obviously love Michael so much and you are taking great care of him. I am so sorry this horrible disease has taken this path.
With aloha,
Kathleen0 -
My Heart goes out to you both......MelanieT said:I am so sorry for all this
I am so sorry for all this disease is and what it does to all of us, caregivers included. I will continue to pray for you both and know we are all here...
Loves,
mel
wishing things to be different knowing that they may not. I am so upset to see some of my friends in this way......Phoebe, Michael, we all love you both.......Love and Hope, Clift0 -
I'm sending warm hugs...
I remember my beau laying flat...and disoriented...and in pain...
SUCH a tough road for you to hoe, dear soul!!!! Does he have a feeding tube in place yet? If so, one of my patient partners had his meds push thru it...made things MUCH easier!
Know that I am sending prayers for you both...
Hugs, Kathi0 -
This will be hard....KathiM said:I'm sending warm hugs...
I remember my beau laying flat...and disoriented...and in pain...
SUCH a tough road for you to hoe, dear soul!!!! Does he have a feeding tube in place yet? If so, one of my patient partners had his meds push thru it...made things MUCH easier!
Know that I am sending prayers for you both...
Hugs, Kathi
I think alot of the end at times, and know one day I will be in that place Michael is in, and know how hard my hubby will have it, watching me go through this, and I hope to make it easy as possible, and sure don't want to suffer, he knows my wants, but do the pain meds help the pain? I don't want to be in pain is all, don't care if I'm lucid or not, as long as I'm not saying stupid things. I know how hard this is for you, both my parents were taken from cancer, and it's not easy to watch. I'm sorry for you Lisa as well to watch your FIL go through Alzheimers, such a terrible disease, which took my grandmother.
You will both in my prayers, I hope something more comes up for Michael to bring him to feeling better, and my positive vibes are with you, it's a scary time, and really rough hearing all this news this month with a few of our brothers and sisters, I am really saddened.
Hugsss!
~Donna0 -
Phoebe and Mike
Both of you have been on everyone's minds non-stop since your post - everyone is saddened by all of this news and it's frustrating to stand by and not be able to help. As Buzzard said, when one of us hurts - we all hurt.
We love you and will keep hoping and praying for you both. Thank you so much for keeping us posted - I know how difficult it must be, as you say, to know what to disclose and what not to.
I've never stood in a CareGiver role, so I think that all of you are the bravest and best I've seen.
Wretched is right.
All of our hopes and prayers to you both
-Craig0 -
Phoebe, I'm so very sorry
Phoebe, I'm so very sorry for all you and Michael are going through. I do keep you in prayer and have asked others to pray.
I remember when Angel was dying, his wife was heartbroken because the medication did not control the pain. She had to go it alone until the last morning! I am very happy to hear that Michael seems to not be in a lot of pain. I'm sure you would love to be able to talk with him during this time, and like Lisa said, this is the hardest thing you'll ever have to do, but you'll get through it and someday these visions will be replaced with happy memories.
Are your mother and sister there with you and can they stay? Oh I wish I could just come and let you cry on my shoulder.
Praying that Michael remains pain free and that his crossing into eternity comes quickly.
In love,
Diane0 -
Phoebe I am so Sorrydianetavegia said:Phoebe, I'm so very sorry
Phoebe, I'm so very sorry for all you and Michael are going through. I do keep you in prayer and have asked others to pray.
I remember when Angel was dying, his wife was heartbroken because the medication did not control the pain. She had to go it alone until the last morning! I am very happy to hear that Michael seems to not be in a lot of pain. I'm sure you would love to be able to talk with him during this time, and like Lisa said, this is the hardest thing you'll ever have to do, but you'll get through it and someday these visions will be replaced with happy memories.
Are your mother and sister there with you and can they stay? Oh I wish I could just come and let you cry on my shoulder.
Praying that Michael remains pain free and that his crossing into eternity comes quickly.
In love,
Diane
But i know all to well what you are going threw and what lies ahead , My worry also was angels pain but it was out of my hands.. I stayed close and told him often I love you sometimes he would respond and say i love you too other times he could not. You and your family are in my thoughts and prayers
michelle0 -
Sorry
So sorry that you are going through this. You are in a difficult situation with the pills, but hope that he is just comfortable. My heart and prayers go to you, husband and family. This has to be very difficult on you as well. May God comfort you.
Kim0 -
I am so sorry
Phoebe, I am so sorry to hear of Michael's declining health. I am sure that you are doing what you can to help Michael be comfortable and this has to be the roughest time for you. I will pray that God be there for you and guide you through all the decisions that you will have to make. God Bless. Margaret0 -
Praying
Phoebe,
I am so sorry for what you and Michael are going through. I know it must seem like everything is spinning out of your control right now. I wish I could do something to change things. I will definitely pray for comfort and peace during this painful transition.
*hugs*
Gail0 -
Prayed for y'all this morning
Phoebe, I remembered you and Michael in prayer last night and this morning. May God bring comfort to you both.
In love,
Diane0 -
Thank you....
I can't thank you all enough for your love and support. Michael was just diagnosed back in August so I haven't been on this site for very long but I am still in awe of the outpouring of genuine care and concern. I have nothing but hate for this awful disease but it gave me the opportunity to experience a deep and unexplainable connection with many kind and loving people.
Michael's condition is a little worse each day. My sons and I sit with him and talk to him even though he is no long able to respond. We try and make him as comfortable as possible and let him know that he is OK and that we will be OK.....that's the best I can do at this point.0 -
Keep talking.. he hears youphoebe1017 said:Thank you....
I can't thank you all enough for your love and support. Michael was just diagnosed back in August so I haven't been on this site for very long but I am still in awe of the outpouring of genuine care and concern. I have nothing but hate for this awful disease but it gave me the opportunity to experience a deep and unexplainable connection with many kind and loving people.
Michael's condition is a little worse each day. My sons and I sit with him and talk to him even though he is no long able to respond. We try and make him as comfortable as possible and let him know that he is OK and that we will be OK.....that's the best I can do at this point.
Hi Phoebe, Keep talking to him, he can hear you and can feel your love. Tell him that he has a lot of very special people thinking of him every moment of the day. You're doing a wonderful job by staying with him. He's a lucky man to have you and the boys so he will not pass alone. His job may be done here but he's needed in Heaven. Tell him Brooks from San Diego sends his love.
Life is funny sometimes
Brooks0 -
Dittojust4Brooks said:Keep talking.. he hears you
Hi Phoebe, Keep talking to him, he can hear you and can feel your love. Tell him that he has a lot of very special people thinking of him every moment of the day. You're doing a wonderful job by staying with him. He's a lucky man to have you and the boys so he will not pass alone. His job may be done here but he's needed in Heaven. Tell him Brooks from San Diego sends his love.
Life is funny sometimes
Brooks
Ditto what Brooks said but from George and Tina in Livonia, Michigan.0 -
take care of your selfphoebe1017 said:Thank you....
I can't thank you all enough for your love and support. Michael was just diagnosed back in August so I haven't been on this site for very long but I am still in awe of the outpouring of genuine care and concern. I have nothing but hate for this awful disease but it gave me the opportunity to experience a deep and unexplainable connection with many kind and loving people.
Michael's condition is a little worse each day. My sons and I sit with him and talk to him even though he is no long able to respond. We try and make him as comfortable as possible and let him know that he is OK and that we will be OK.....that's the best I can do at this point.
please don't lose site of your health and well being I know it is hard you want to take care of mike and than there are the children and then there is his family and your family to tend to . Been a caregiver for my parents and you can get run down and sick very easy. I think you said hospice was comming in My advise is when they are there you need to get out of the house take the kids for a hambuger or run errands but you need to get away if only for 30 min. it will help you with the stress you will have later down the road. I am praying for you and the family.0
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