Hospice

I think by now all the family and a number of our friends know that Wayne isn't doing so well.  He is in he hospice in patient facility, which is a section of a nursing home.  It's better than the rest of the nursing home though so that is something.  

He came home from the hospital and was referred to hospice a couple weeks ago and then only five days or so after he was admitted to the hospice program he had to go in.  He had increasing pain and finally, when he was screaming in pain, I gave him dilaudid, the medication that I knew would make him wacky as heck, but that would stop or at least dull the pain.  His regular pain meds weren't even touching it.  And Wayne went away.  

He has continued to need it so the nurses have been documenting how much of the vicodan and dilaudid it takes to keep him comfortable, and then today they started him on a fentynal patch. For breakthrough pain he will have vicodan and we are going to try not to give him any dilaudid at all. With this mix, we are hoping against all hope that he will come out of his stupor and come back to his previous self, but honestly, we don't know that he will.  He is going downhill fast.  Everyone in the family is coming the first week of April and regardless of his condition, Glenda and I decided tonight that we will take him out of there and bring him home.  There should be plenty of helpers.  Wayne seems to have lost his fight, and we don't know what to do to bring it back.  Maybe after the visit by his family he will feel more like fighting.  I sure hope so.  Anyway this is a post that is extremely hard for me to write and one that I didn't want to have to write.  Please understand if it's so short.   Feel free to call Glenda or me to hear more specifics.

Quitting Chemo

As all the family knows by now, Wayne is quitting chemo.  He has just been in the hospital again and is suffering from "failure to  thrive," a medical way of saying that his chemo is really hard on him and he isn't eating close to enough.  This has been going on for quite a while.  I can get him to eat a bit more at home than at the hospital but that isn't saying much.  We were worried about telling his doctor that he wanted to quit for four weeks, and his doctor came in the morning he released him and said he felt that Wayne should quit period.  So he is going to take two months and then hopefully talk the doctor into trying again for a short period and then take frequent breaks--maybe like six weeks on and four weeks off,  We are hoping with this regime he will not get so depleted and still get enough chemo to keep those tumors in check.  Right now they are smaller than they have ever been, so we have some room to experiment.  However, if he keeps going the way he is going he is going to be in serious trouble sooner rather than later.  We are hoping that without the chemo he may feel better enough to enjoy life a bit as well as to eat.

We went to the VA doctor today and he agreed that medical marijuana would be good for Wayne, but he is not allowed to prescribe it.  It's legal her and here are lots of clinics here for it though so we will just have to go and find one we can afford.  If it helps his appetite, it will be worth it!  At this point we will try anything, and apparently they have this down to a science and he can get it in pill  (yeah I don't have to smell it!) and it can be tailored to his needs.  If it works, great.  I just have this big block against it because it's been illegal for so long.  But his health is more important than my qualms.

The VA doctor also made the referral today to hospice.  They can come in here and help in many different ways.  They have nursing and people to help with pain.  We are hoping for a patch that will deliver pain meds constantly in smaller amounts so that he always keeps ahead of the pain rather than having to always play catch up.  He is starting to have chest pain now and it seems to come in waves.  It really hurts him when it comes and sometimes it's as often as every ten seconds or so and others it;s every five to ten minutes.  It's hard to keep up with.  They also offer respite care and counseling among other services.  I'd like counseling even if Wayne doesn't.  They also have in home volunteers who will come in for an hour or two and help out.  Right now I can't really leave him, even to go and do laundry, and he's too tired for me to take along on all my errands.  He gets worn out too easily,  So I am looking forward to having them here helping.

Wayne is very weak, but he has started physical therapy to strengthen his muscles, especially his legs, and he is going to get to do it in a therapy pool.  I am also doing water therapy, so I have been in this pool and it is wonderful.  They keep it at about 98 degrees.  Wayne is always complaining of being cold, so this pool should warm him up.  The therapist he has specializes in patients with cancer, so she understands how weak he is and about that pesky failure to thrive.  I think it's going to do him a world of good.  We also have a therapist coming to the house once or twice a week to work within the home setting.  I am hoping that he will do something different and help Wayne navigate more easily around the apartment.  We have wide paths for him to walk with the walker, but I am hoping that he can help make it even better.  We are also getting a wheel chair as soon as they can work out the details with medicaid, who even though we are now divorced, are still requiring a $1000 a month copay before it kicks in for each month,  But I think Carol is bringing one down tomorrow to borrow until it comes.  Now we will be able to take walks along the river.  I am looking forward to having it, and we are both looking forward to Carol's visit.  She and Wayne have a special relationship and I am glad she is able to come as often as she does.  Little sisters are great.

We have a new bed, courtesy of Glenda, that is much better for Wayne,  It came today and is so much easier for him to get in and out of.  It's also a bit more narrow than what we had so he has a better path to it and can get the walker all the way to where he climbs in.  He was not able to do that with out old bed, which was really a hide a bed with a blow up mattress on top.  He just came out and told me that he really likes it,  I am very glad for him.

I will try to let you know how his eating is going.  I hope he starts eating very soon.  Part of the trouble is his teeth that he had pulled.  They have just now healed enough to get impressions for his dentures made.  Soon he will have dentures and will have a lot more choices of what to eat.  But by then the taste thing that comes with chemo as well at his lack of appetite might have warn off,  I sure hope so.  I'll keep you posted.