sapphire12
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Post by sapphire12 on Jan 17, 2015 23:16:55 GMT -5
So sorry you are going through this Mich! I echo the others who have said that Hospice is a great resource, even if end of life isn't imminent.
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cronewitch
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Post by cronewitch on Jan 17, 2015 23:40:05 GMT -5
Getting the mechanics in place for his homecoming is a good idea. The chair, a hospital-type bed (if he needs it), and an handicapped seat for the commode are all items you can rent (and if I remember correctly, are covered by insurance). And please, get hospice care involved. Mich, you know the eventuality of pancreatic cancer. He's holding his own now, and the diagnosis for this disease is getting better in terms of life expectancy. I'm not trying to be the Debbie Downer here, but you know the outcome. He does not have to know the help is from Hospice. The staff will not wear their ID into the patient's home or room, if requested. This is about your dad, but it's also about his wife, who now faces his illness with no help from her family, from the sound of things. It's hard to face this alone, more so because she has local family who are utterly incapable. My understanding of Hospice is they quit trying to prolong your life. Mom was told to get it for dad she had to tell him he was dying. When mom had Hospice she already knew she refused a biopsy and wouldn't get treatment. Not sure if it is a good idea while still fighting for a longer life.
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Post by The Walk of the Penguin Mich on Jan 18, 2015 13:48:21 GMT -5
So he is now in a hospital associated rehab, in very good spirits and getting PT to strengthen his legs. Just a few sessions already and last night he said his legs feel stronger already. In fact, last night he was trying to get the munchies in so he could watch the football game today!
I suspect that had they given him a shade more time, there would not have been this boomerang back in. Rather than booting him out Wed., had they shifted him into the in patient rehab after he finished the antibiotics and ramped up some PT, it would have been better for him. He told them at the time that he had periods where he felt his legs would not support him. His wife told me he had exactly ONE PT session (the day he left!) while he was in the hospital, and he was flat on his back over a week just fighting the infection!
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Bonny
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Post by Bonny on Jan 18, 2015 14:22:11 GMT -5
That's good news Mich; glad he's in better spirits!
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gacpa
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Post by gacpa on Jan 18, 2015 16:52:25 GMT -5
I am so glad to hear he is in good spirits. That is half the battle right there.
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Artemis Windsong
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Post by Artemis Windsong on Jan 18, 2015 17:19:31 GMT -5
Best wishes to all of you.
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NancysSummerSip
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Post by NancysSummerSip on Jan 19, 2015 10:18:11 GMT -5
Getting the mechanics in place for his homecoming is a good idea. The chair, a hospital-type bed (if he needs it), and an handicapped seat for the commode are all items you can rent (and if I remember correctly, are covered by insurance). And please, get hospice care involved. Mich, you know the eventuality of pancreatic cancer. He's holding his own now, and the diagnosis for this disease is getting better in terms of life expectancy. I'm not trying to be the Debbie Downer here, but you know the outcome. He does not have to know the help is from Hospice. The staff will not wear their ID into the patient's home or room, if requested. This is about your dad, but it's also about his wife, who now faces his illness with no help from her family, from the sound of things. It's hard to face this alone, more so because she has local family who are utterly incapable. My understanding of Hospice is they quit trying to prolong your life. Mom was told to get it for dad she had to tell him he was dying. When mom had Hospice she already knew she refused a biopsy and wouldn't get treatment. Not sure if it is a good idea while still fighting for a longer life. They do not prolong life, but they do make what remains comfortable. I am not sure how all Hospice organizations work, but the ones I have dealt with will make the effort not to upset a terminally ill patient by entering the house wearing clothing with the Hospice emblem, etc. if requested. Makes sense to me, since they are there to do a job regardless. I don't know if Mich's father has accepted his diagnosis or not, however. If he has, then that's one thing. I don't think it's a bad idea to contact Hospice and get the basics in place, though. Hospice can also advise where to find other assistance if end-of-life care is not appropriate at this time. When the time comes, everything will be ready. And as I've said, this outside help is as much for her stepmother as it is for her dad.
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Post by The Walk of the Penguin Mich on Jan 19, 2015 12:06:01 GMT -5
At this point, his pancreatic cancer is stable. There was no progression in the CT scan that was done 3 weeks ago so hospice at this point is a little premature. Dad is terminal, sure....believe me, I know one of these 2 problems is going to kill him. However, not providing treatment for an infection that is curable is not what he wants right now. He has said that if his heart stops, he does not want it restarted. He will not go on a ventilator.
Hospice will be called in when it is appropriate.
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The Captain
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Post by The Captain on Jan 19, 2015 12:10:46 GMT -5
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Post by The Walk of the Penguin Mich on Jan 19, 2015 13:32:27 GMT -5
Thanks, I wish that there was more that I could do too, but I really can't other than give emotional support from 3000 miles. That's going to have to be it until March, when I go back. TD and I also got an invite at the end of June to my friend's (the people we were with New Year's Eve) condo in Myrtle Beach. Other than airfare, car rental and meals, we have a place to stay on the beach with a good group of friends. We will likely take them up on this offer.
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Works4me
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Post by Works4me on Jan 19, 2015 19:46:25 GMT -5
A home health agency can provide PT at home until he is able to go out for it as well as other assistanc on a limited basis until his wife can take over. They can also work with the rehab to arrange for needed DME (durable medical equipment) items such as bedside commode, hospital bed, shower chair, walker, etc. Hospice can provide those services plus more but need for hospice requires a terminal diagnosis with a life expectancy of six months or less. Your father and/or his wife may need to explore the option of hiring help to care for him and/or the house. People often gave a problem with this but it can help to remind them that the rainy day they have saved for all of their lives has arrived.
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Post by The Walk of the Penguin Mich on Jan 20, 2015 11:32:16 GMT -5
Home health was organized when he went home, but she didn't show up until the next day. I think she should have been in either the day of, or (preferably) the day before my dad was released from the hospital.
I can't help but to compare it to when I was checked out of rehab. An hour after I got home, home health was on my doorstep. The difference was that I needed IV supplies to dose myself with my antibiotics, but she went through the house to let us know where we had deficiencies (none). Any deficiencies that we discovered we found after trying to work with what we had the rest of the day. The biggies were that the recliner was too low for me and didn't have sufficient cushioning. Neither did my wheelchair. However, those problems were very quickly resolved.
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Works4me
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Post by Works4me on Jan 22, 2015 1:05:58 GMT -5
Just wanted to say that your recovery is one of the things that inspires me not to give up and surrender fully to lupus. The way you have kept going on and just put one foot in front of the other without self-pity, well, it just helps me to go on - kind of like a oath or something. Anyways, thank you for sharing so openly with all of us here and in RL. Your DF and SM are lucky to have you in their lives. &
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Post by The Walk of the Penguin Mich on Feb 10, 2015 23:09:20 GMT -5
Just thought I'd update you all on this.
My dad spent about 3 weeks in rehab, doing much better and getting stronger. Then he started retaining fluid, his lungs were not capable of helping his heart move the blood. After increased diuretics and isle of a bipap, the fluid started coming off....but now he is back in the same place before he went to rehab.
He wants to come home, so hospice has been called and he's coming home tomorrow. He's had enough.
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midjd
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Post by midjd on Feb 10, 2015 23:49:46 GMT -5
I'm so sorry, Mich.
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taz157
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Post by taz157 on Feb 10, 2015 23:50:30 GMT -5
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busymom
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Post by busymom on Feb 10, 2015 23:58:21 GMT -5
So sorry, Hon!
At least he's still able to make his own decisions, however difficult.
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Opti
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Post by Opti on Feb 11, 2015 0:03:22 GMT -5
That sucks.
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mmhmm
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Post by mmhmm on Feb 11, 2015 0:08:03 GMT -5
Mich, I'm truly sorry about your dad. It sounds like he's given it everything he's got and he's just plain tired of fighting. I'm glad he'll have hospice with him. They're incredible. My very best wishes to him, to you, and to all who love him.
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Deleted
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Post by Deleted on Feb 11, 2015 5:39:51 GMT -5
Mich I'm so sorry.
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finnime
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Post by finnime on Feb 11, 2015 6:47:12 GMT -5
I am so sorry for your pending loss, and glad your father will be getting good help at home. I hope he gets joy in each day.
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wvugurl26
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Post by wvugurl26 on Feb 11, 2015 7:52:21 GMT -5
I'm sorry mich. Cancer really sucks.
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CarolinaKat
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Post by CarolinaKat on Feb 11, 2015 7:54:48 GMT -5
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mollyanna58
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Post by mollyanna58 on Feb 11, 2015 8:37:36 GMT -5
I'm so sorry to hear this, Mich.
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Wisconsin Beth
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Post by Wisconsin Beth on Feb 11, 2015 9:14:30 GMT -5
I am so sorry to hear this Mich. Hugs for you and your family.
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Bonny
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Post by Bonny on Feb 11, 2015 9:42:40 GMT -5
Oh sweetie, I'm so sorry!
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Post by The Walk of the Penguin Mich on Feb 11, 2015 10:07:14 GMT -5
I'm sorry mich. Cancer really sucks. At this point, it looks like the cancer is still on hold. It is the pulmonary fibrosis that is kicking his butt.
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Formerly SK
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Post by Formerly SK on Feb 11, 2015 10:16:15 GMT -5
I'm so very sorry.
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muttleynfelix
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Post by muttleynfelix on Feb 11, 2015 10:16:27 GMT -5
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bean29
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Post by bean29 on Feb 11, 2015 10:24:32 GMT -5
I am so sorry Mich.
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