Topic: hospice care for Joe

I posted earlier today under general experiences and then found this topic which is exactly what I wanted.  Joe entered the hospice program yesterday but he will stay at home for now.  He can still move around the house but has really bad ascites and some swelling in his legs and feet.  His appetite is gone and I was trying to get him to eat a lot of protein but now I am just going to let him eat what he wants, I want to make this time his choices including no Lasix if that's waht he wants.  Two of our children are in town and two are out. Even tho I don't think his death isnot  emminent at this time I think I will have them come in for a short visit so they can have some quality time while they can. We re also planning a weddingfor our daughter for December 27th but I don't think he can last that long.  I see other people saying everything else seems unimportant now and I sure feel that way.  I am so glad to find this site and this secton that deals with exactly where we are right now.  thanks for those of you who have been so faithful in answering our questions and letting up spout off at times.  I will keep in touch. God Bless. Mary Anne

Re: hospice care for Joe

So very sorry to hear about Joe. He is very lucky to have you and his children to help him through this part of his journey. This will be a time to cherish the memories you all have made and it sounds like you are making all sound and kind decisions. Our thoughts and prayers are with your family.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: hospice care for Joe

Maryanne.....Seems that as long as I can remember being on this board Joe and you have been part of it and I have been reading your blog as long as it has been in existence.  It has been wonderful sharing with you the wonderful adventures you and Joe have been able to enjoy and having the privilege of getting to know your family. Thank you.   My heart is with you at this very special time when every moment is the most precious forever embedded in our memories.  I am sending to you and your family all my love.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: hospice care for Joe

Hi Mary Anne,  I 'm glad you found this section, the site has made a few changes in the last couple years.  I'm sad to hear Joe has entered hospice , but glad he is still able to get around at home.  I pray for a calm and loving time for the remainder of Joe's journey.  I pray God's strenght for you all. 
God Bless,
Jeff

Take it to the Limit,One More Time! (Eagles)

Re: hospice care for Joe

Maryanne,
Sorry to hear about Joe, but, as Jeff said, it's so wonderful that he can still be at home and make his own choices and spend time with his family. You're doing such a wonderful job of taking care of him - I wish you both the best in these trying times.
Joyce M

Re: hospice care for Joe

Maryanne - So sorry you and Joe are having to go through this most difficult time; I read an artticle by Tony Snow not long ago that said the person that is sick takes on the faith of two while the caretaker takes on the worries and fears of two.  Joe will be O.K.  Take care and know that you and Joe are in my prayers and thoughts.
Betty Johnson

Re: hospice care for Joe

Thanks for all your supportive comments.  I have loved being on this site and learning so much from all of you.  Even tho Saturday was a really hard day, yesterday was a much better day after Joe got some rest from the trip.  My sisters and our oldest daughter and family came to visit and Joe seemed to really enjoy it more than he has in the past week.  The social worker from hospice is coming today. I think not having the schedules of doctors and chemo will be more relaxing.  Joe seems to be in a very good place and that makes it easier for me.  I will continue to watch your journeys as you have become a part of my life for the last two years.  It has been 27 months since diagnosis but symptoms were there ten months before that so we have had a good run.  I guess it is never long enough but when the quality of life is gone it isn't fun anymore if it ever was. I will say that this disease has strenghtened our relationship with each other and with our Lord and also helped us to think about using each day as best we can since we don't know how many we have left.  Again, thanks for being here.  God Bless.  Mary Anne

Re: hospice care for Joe

Oh Mary Anne, you always have our support and love.  I admire you and Joe so much.  I'm so glad Sunday was a better day for all of you.  Charlie's 18 months since diagnosis.  It really is never long enough.  What you said is perfect about the quality of life.  I'm so thankful your relationships have been strengthened as we feel ours have also.  It teaches you how to live fully in the present moment, doesn't it?  May God encircle you and Joe and all your family and give you peace and comfort.

Carol

Re: hospice care for Joe

Hi Mary Anne,
May God give you and Joe strength and faith in these times.
God bless you,
Lisa

Re: hospice care for Joe

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

Re: hospice care for Joe

Mary Anne....Well put by the Hospice nurse...Joe is the boss.  I had to remind myself of this while tending to my husband.  Also, sleep deprivation seems to go hand in hand with being a caretaker and it certainly happened to me, also.  It seemed as if my mind did not want to rest and was working overtime.  If it is not possible for you to catch a small nap during the day could you find 15 minutes here or there in order to close your eyes and relax.  It is nothing like a good night's sleep however, it does help to keep the energy going.  I am so happy for Hospice to be given relief to Joe and to you.  I am thinking of you and am sending tons of hugs.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: hospice care for Joe

Mary Anne,

I know that you are not at the point where I am now, as my husband Jim passed away Sept. 2, 2008. However, I just wanted to let you know that I too am still waking in the middle of the night unable to sleep. I also write in my journal & go on the computer. Some times I just stay up as it is hard to get back to sleep & if I do it seems it is almost time to get up again! I think the fact that the nights are so long right now does not help, along with the fact that it is so empty feeling here now & it is hard to adjust to the fact that I am alone. You are right, you just can't turn off your thoughts. Your mind just keeps on going! I am glad that things seem more peaceful for you now.  Continue to cherish the time you have together. Jim's passing came so quickly we did not have that time & I envy those of you that do.  I hope only for the best for you & Joe in the days to come. You will both be in my thoughts & prayers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: hospice care for Joe

Mary Anne,

I know a little of what you and Joe are going through.  My dad entered hospice care in a nursing home a few weeks ago, and I can only imagine how stressful it must be as the caretaker in your home.  You are right when you say things are calmer without the running back and forth to appointments, tests and treatments.  Although my dad is very sick, he seemed much more ill and agitated when he was treating, especially the chemo which sucked the life out of him.  You and Joe are blessed to have a lot of support around you to get you through this, and the hospice care workers are so very helpful and caring.

Please make a point to take some time for yourself - no easy task, I know.  Lord knows, you deserve it.

You've found the right place to share, any time.

Jan

Re: hospice care for Joe

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

Re: hospice care for Joe

Maryanne -

Thanks for checking back with us.  It really helps us to know what you are going through, just as it is an opportunity for you to vent.  Joe is so lucky to have his loving family around him.  Not only do you support each other, it sounds like you are keeping busy to help the time pass meaningfully. 

Take care.

Jan

Re: hospice care for Joe

Mary Anne....I am sending tons of love to Joe, you, and your entire family.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: hospice care for Joe

Mary Anne - I continue to keep you and your family in my thoughts.  I hope Joe remains pain free.
Colleen

Re: hospice care for Joe

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

Re: hospice care for Joe

Mary Anne,

I'm following your blog everyday and was so touched by the relationship your soon to be married daughter has with her Dad.  Our wedding is on the 20th and I'm praying my Mom is going to be able to be there.  She so far is hanging in there but I'm hearing some stress in my Dad's voice concerning her general status. 

I ( and my coworkers here in the lab) stood  in tears and read about Joe giving her away.

I'll keep you and yours in my prayers. Please do the same for us as my soon to be son-in-law will deploy again to Iraq in mid-January.

Stay strong and give Joe and yourself a big hug!

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: 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

Re: hospice care for Joe

Mary Anne, what great love and strength you have given to Joe. We pray that he can end his journey painlessly as our thoughts and prayers go out to you and your family!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: hospice care for Joe

Mary Anne,

The grace and dignity that Joe and all of you have demonstrated is very inspiring, it is hard to know how to die and how to let someone die but your family is a shining example. You are all in my thoughts and prayers.

Patty