A new week
It's Sunday morning and the house is quiet. I know I should be in church but here I sit. Steve said he wasn't going so I decided to stay here.
Last week was rough. Steve started hurting really bad on Sunday after church. I noticed during church he was having a hard time just getting up to sing with the congregation. It was fathers day and our youngest daughter and grandaughter came to go to church with Daddy. When the service was over the pastor called on him to pray. (that made our daughter mad) He is emotional and sometimes his voice will quiver. He told her that as long as he was able to pray he wanted to do it.
On Sunday afternoon and Mon-Thur he was in the worst pain. He could not get confortable! On Thursday the palliative care nurse-practioners came. They were so nice and they could see first hand how he was feeling. We talked at length (2 1/2 hours) and Steve described how he was hurting. She decided that a lot of the pain was the rib not healing but she thought that some of it was nerve damage from all the surgeries he has been through. So she gave him meds for nerve damage plus put him on round the clock pain meds. She does not want him to be without it in his system. If he gets up for the bathroom he is to take it! Steve was worried about addiction, she assured him that they had ways to get him off it. But I told him if it helps what does it matter?
I can't believe the change in him after one pill! He acts like a different person. Before he acted like a worm in hot ashes! Why did no one think of this before?? I am so grateful for these wonderful people!
They did ask about a DNR? That threw me a little. I know they have to ask. She said (and she was reading from a paper) if you had a heart attack right now would you want CPR? Steve answered "well yes, of course I would"! Later on might be another answer but now YES! I have his health care power of attorney but they wanted us to have a living will. She assured Steve that if it is in his handwriting it would be so much easier for me to make that decision. I entirely agreed with that.
How is the world did we get here from a broken rib??? The cancer is stable and we are discussing a DNR. But they have helped him tremendously! I thank the good Lord above for that! Most people think and associate Palliative care with hospice, and when the phone rings it does show on the caller ID hospice. That will take some getting used to.
We had the pool filled in last week and that is one less burden on us. We had a horrible storm on Friday and the yard was filled with branches and limbs. The wind and rain was bad. We had 3 inches of rain in about an hour. Thankfully my daughter and her family came to help me. We had to rake the yard to get it all up. It would have taken me forever!! My son-in-law is wanting to take care of the grass for Steve. Of course Steve is insisting he can do, and telling me don't take that away from me! So I won't. If he thinks he can do it, so be it. I will mow the rough areas and he can take the front and side yard. A man gotta do something or go crazy. I understand that.
I am sorry for going on so long. I pray that today is a good day for all of you! Thank you God for my DS friends.
Much love,
Wanda
Last week was rough. Steve started hurting really bad on Sunday after church. I noticed during church he was having a hard time just getting up to sing with the congregation. It was fathers day and our youngest daughter and grandaughter came to go to church with Daddy. When the service was over the pastor called on him to pray. (that made our daughter mad) He is emotional and sometimes his voice will quiver. He told her that as long as he was able to pray he wanted to do it.
On Sunday afternoon and Mon-Thur he was in the worst pain. He could not get confortable! On Thursday the palliative care nurse-practioners came. They were so nice and they could see first hand how he was feeling. We talked at length (2 1/2 hours) and Steve described how he was hurting. She decided that a lot of the pain was the rib not healing but she thought that some of it was nerve damage from all the surgeries he has been through. So she gave him meds for nerve damage plus put him on round the clock pain meds. She does not want him to be without it in his system. If he gets up for the bathroom he is to take it! Steve was worried about addiction, she assured him that they had ways to get him off it. But I told him if it helps what does it matter?
I can't believe the change in him after one pill! He acts like a different person. Before he acted like a worm in hot ashes! Why did no one think of this before?? I am so grateful for these wonderful people!
They did ask about a DNR? That threw me a little. I know they have to ask. She said (and she was reading from a paper) if you had a heart attack right now would you want CPR? Steve answered "well yes, of course I would"! Later on might be another answer but now YES! I have his health care power of attorney but they wanted us to have a living will. She assured Steve that if it is in his handwriting it would be so much easier for me to make that decision. I entirely agreed with that.
How is the world did we get here from a broken rib??? The cancer is stable and we are discussing a DNR. But they have helped him tremendously! I thank the good Lord above for that! Most people think and associate Palliative care with hospice, and when the phone rings it does show on the caller ID hospice. That will take some getting used to.
We had the pool filled in last week and that is one less burden on us. We had a horrible storm on Friday and the yard was filled with branches and limbs. The wind and rain was bad. We had 3 inches of rain in about an hour. Thankfully my daughter and her family came to help me. We had to rake the yard to get it all up. It would have taken me forever!! My son-in-law is wanting to take care of the grass for Steve. Of course Steve is insisting he can do, and telling me don't take that away from me! So I won't. If he thinks he can do it, so be it. I will mow the rough areas and he can take the front and side yard. A man gotta do something or go crazy. I understand that.
I am sorry for going on so long. I pray that today is a good day for all of you! Thank you God for my DS friends.
Much love,
Wanda
Replies
Dear Wanda - I love your turn of phrase - a worm in hot ash!!!! I can so see it!!
More importantly - what a blessing that palliative care nurse took the initiative to change his pain meds and give him something for nerve damage. I so hope that the improvement continues.
The DNR is scary - but what Steve\'s reaction to it tells you is that the life he has now, with you, regardless of the pain he\'s suffering at this moment, is still very very very much worth having. The positives clearly far outweigh the negatives, and that is a testament to you, and your love and caring, and what you have together. Long long may it continue.
with much love, meriel x x x
My sweet friend, it is so good to hear that Steve s feeling better after they started the new meds. I know that it has to have lifted a little weight off your shoulders. I am honored to know you, and you are sure a testament to the rest of us.. continued luv and prayers my friend. Annette
Precious Wanda,
We also had to face those hard questions of a DNR, living will, etc. last week. Just the professional question, hurt my heart....so know how you were feeling too.
I\'m so thankful that the nurses have come up with a combination to relieve Steve\'s pain. God bless them! That has to be uplifting for both of you.
I, too, believe in allowing our men to do whatever they feel they can and want to. They need some control, in this disease where so much has been taken away.
Reach out for others to help you with things, just like the yard. You are only one person, and can\'t do it all. I\'m dealing with that myself.
Hang in there, my sweet friend. We\'re walking this journey together, and I\'m always here for you.
My Love and Prayers,
Ingrid
Tell Steve not to worry about addiction. We learned the same things about pain control that you guys are learning. At this point, the stuff needs to stay in his system until that rib heals. Much of MD Anderson\'s treatment is centered on pain control and they say if a person goes too long without the meds, the pain reaches a level that takes much more medication to bring it back down. Dan was horrible about taking meds for fear of addiction. His oncologist told him that cancer patients rarely get addicted to pain meds. It is something the body truly needs during this time and weaning off usually goes quite well. He said all of his patients had easily given up the meds once the source of pain was gone. I think Steve\'s mindset is a good indication that he will be the same way.
I know how scary a DNR is to think about also. As far as them asking, they must ask for practically any reason. I was asked for one when I went in for my outpatient shoulder surgery. I don\'t have one, but often think I should consider filling one out. If something happened to me tomorrow, I would hate for James and the boys to be faced with such a decision.
Hugs to you today
Angie
My Dearest Wanda -- Know that I am praying for you and Steve. I am glad he is feeling somewhat better. I have missed you to my friend!
Hugs -- Carla
I am so glad to hear that the nurse was able to get Steve\'s pain under control!
DNR\'s are hard to contemplate, but everyone needs to think about, under what conditions, they would want one.
Love, hugs & prayers,
Lois
Dear Wanda,
Palliative care is a wonderful life line and as I had mentioned to you once before, a real plus for the caregiver in terms of stress relief and fine and valued assistance.
Also, the DNR thing is an awful piece of paper to contemplate, but for those in the business it is routine. As far as living wills, everyone should have them regardless of their health condition.
Glad Steve is getting some relief. The battle in which you are engaged is one of the toughest things a couple can go through together. But being together and facing it with spirituality and love is what life is about.
Lve,gloria
Wanda.... my heart goes out to you and Steve. So thankful the nurses have new meds working well for his pain.
I agree... don\'t worry about addiction... just get the pain under control !! Once that has subsided, then deal with the meds.
Sending you hugs and prayers, LInda
Wanda, so glad to hear that they were able to find a combination that will give Steve relief. At this point addiction is the least of it. Son has been on morphine for over a year, due to his hip. VA says the same thing, when time comes, we can get you off of it, meanwhile let it help the pain. I have been saying prayers for you two, and did wonder if that storm got you. Glad that you had help cleaning up. Lots of luv sent your way. Jane
Dear Wanda, I am sorry I couldn\'t respond sooner. I am so glad the pain meds are helping. Your question is very justified....why has no one thought of this sooner? Anyway, that paperwork is what all the hospice folks do. It was too late for us as M couldn\'t lift his hand to write...but, we had no problems with me making decisions for him as I was his wife and care-giver...which is what you are. I pray that Steve will feel well enough to get up more and interact with family, friends and church.
Take care my friend. Love, Linda