hospice care for Joe

Well, here it is alomost a week later and we are still on the journey. Joe hasn’t eaten for 9 days now. he only drinks about two glasses of fluid a day. The hospice nurse said he could go two weeks but his output is really dropping. The toxin levels must be increasing becasue the Ativan dose isn’t holding him well so I just called hospice again to up the dose. I promised to keep him comfortable. he cannot even turn in bed by himself now so I have to have help. I have great neighbors and kids so so far I think I can keep him at home. That was his wish and mine too. My back is better now that he has a catheter and i don’thave so many changes. I keep praying for God’s timing to separate the funeral from the wedding but we are only 16 days from the wedding now. Karen is back in Phoenix with Mark but will be back the 23rd for Christmas (and the wedding the 27th)or before if necessary. I blog every day but only get to this site about once a weekl Hard to keep up but thanks for bieng here when I need you. God Bless. Mary Anne

I can’t believe Joe has been in hospice almost a month now. The nurse thought he would be gone by Thanksgiving but here we are. He now has a catheter which he wasn’t crazy about but my back was giving me trouble and I have already had back surgery 8 years ago and a herniation last year so I asked him to do it for me. Our kids have all gone home now and although we have two in town they both work so will just be stopping by. I also got a hoyer lift so I can move him up in bed. I am very thankful for my nursing training or I don’t know if I could manage this at home. He is sleeping most of the time and when he is awake he has a very difficult time getting his words to day what he means. He is on Ativan about 4 times a day and oral morphine (Roxanal) about twice a day. I have been expremely pleased with hospice and their prompt response to anything I need.
we are now 3 weeks from our daughter’s wedding. The ceremony will be at the house with just family. We never thought Joe would make it this far but my hope is that his death and the wedding don’t happen on top of each other. Ony God knows the timing and we trust in him to work it out in the best way. Our daughter who is getting married got laid off while she was in here (she was in the housing field) so she is back in Phoenix looking for a job. I have moved the computer in to the bedroom so I can catch up on cc and still be with Joe. Thanks for your continued thoughts and support. Mary Anne

It has been almost a week since I posted on this site but I have been making daily entries on the blog. Our 4 kids are here with me all the time now. The two in town ones leave to go to work for awhile and then come back. The hospice nurse told us a few days ago that she didn’t think he would live a week. He is confused sometimes because of all the jaundice and toxins in his body and he sleeps most of the time. He seems to have an awake period in the evening and we take advantage of that and all gather on the bed and sing worship songs and old John Denver songs that he used to play on the guitar. Last night he even watched a little football with Michael. He is still comfortable with a little ativan once or twice a day and some liquid morphine once a day. He is starting to itch a little from the jaundice and that would be the worst thing for him. He got a bad sunburn when he was young and the itching almost drove hime crazy. I will ask the hospice nurse for something for it today. Right now it is just minor and intermittent. Thank you all for your wonderful comments and words of compassion.
If you want to keep up with our daily journal it is on the blog. I have found that to be a wonderful way to chronicle our journey so if some of you haven’t tired it, you might find it useful to keep track of how things were along the way. It also helps to have kids who ar computer savy. I have to say I haven’t had time to read the site in the last two weeks.
With all the kids here they are constantly on the computer doing work related stuff or just trying to keep in touch with their friends. Yesterday they cleaned out my utility room and three cupboards in our kitchen. Do you know how much stuff you can accumulate in 20 years and you never throw anything out? I have a huge pile for good will and now I can find the things I use all the time. Our bedroom is on the main floor so we take turns going in and sitting with Joe. He really doesn’t want a lot of talk at this time except for the evening time.
It sure seems like I’m ramblin but I have a few minutes alone so I wanted to touch base. Thanks for being here whenever I need you. Mary Anne

Hi Friends,
Well, we are certasinly impressed with ospice. The nurse came yesterday and covered all aspects of care and then got orders for things we “might” need so we re ready. we now have oxygen in the house “in case”, ativan to help him sleep, a lift chair so he can get in and out by hiself which helps his dignity and today he got a massage ofhis legs to help with the fluid buildup. I think he lilkes the attention. The one thing the hospice nurse said that I thought was really important was that he is the boss. He can eat what he wants or not, not take his Lasix if that was OK with the doctor (which is was). She explained the consequences to be sure Joe understood. I went to exercise for the first time in three weeks and that felt good. I know I have to do things for myself. I try to do them in the morning while Joe is still sleeping. Anyone else waking in the middle of the night and not being able to sleep? I am taking a sleeping pill but lately I have just been getting up and journaling and getting on the computer for a few hours and then go back to bed. It is hard to stop your mind from going. So far there is not a lot of physical care for Joe but I try to spend as much time with him as I can while we are still together. I do find it more peaceful being in hospice for some reason. We had too much company yesterday and today was a break. Joe slept most of the afternoon after not getting up til noon but that is OK. Again, thanks for being here to listen and advise. It has been such a big help. I really like this hospice section. We really ae in a different phase than those just diagnosed. Mary Anne