Sunday, April 26, 2009

Anyone involved in Home hospice?

3 days ago my father is walking 3 miles everyday and Thursday he went to the hospital complaining of abdominal pains. He has found out in the hospital that his porstate cancer has spread to his liver and that he might only have a few months to live. His doctors had been treating his prostate cancer and it was under control for the last 10 years and everything was going well until this bomb hit. I am now his Power of attorney and I am the only family member he has left. I am married with a 10 month old and my wife is expecting twins in July. He was released from the hospital this morning and he is staying with me, my wife and our baby. He has like 10 different drugs that I have to manage for him to make sure he takes at the right time and he has his pain medicine. I didnt even know what a hospice was until yesterday when the doctor said he should have that care. Now I have to decide about in home hospice or let him go to his retirement home and have a nurse see him once a day. LifeSucks

Anyone involved in Home hospice?
I work for a hospice as a nurse and my dad died from cancer. Life sure does suck sometimes. If I was in your shoes, the first thing I would do is come to some kind of acceptance that your life is gonna be out of balance for a while. It's my experience that dying is always a mess. That's the bad news. The good news is that with skilled hospice care, his symptoms can be managed and he can be kept physically comfortable. That being said, there is something I don't understand about your scenario. You state that you have to decide where your father goes. Is your father, who was walking three miles a day three days ago, already so incapacitated that he cannot be involved in the decision making? Whether or not he is able to be involved in the decision making, your wife has to be involved, too. After all, it's her house, too.


Don't put off practical matters that may seem distasteful. For instance, discuss the appropriateness of a Do Not Resuscitate order with his physician and if you decide you want one, keep the document with your father. Make funeral arrangements. I know it sounds macabre, but knowing that things are taken care of will contribute greatly to both your and your father's peace of mind.


You can have hospice involved wherever your father decides to stay. Use everything they have to offer. It's not just nursing care. Even if you have no religious faith at all, a hospice chaplain can help you with some of the existential and spiritual problems that invariably come up and they never preach. Social workers have access to many resources that can help you and are skilled at brainstorming solutions to problems.


You have a lot on your plate. Don't feel guilty if you can't do everything. You're going to have a lot of people and things competing for your time and energy. You're not alone though, so take any help that is offered.


Enjoy your father in these last few days, weeks, or months you have with him. Laugh, cry and shoot the bull with him. Learn the things that he has yet to teach you.


Good luck, my friend.
Reply:You're right...it DOES suck.





Home hospice is pretty much what I'm doing, here; my husband has prostate cancer, diabetes, and Alzheimer's. I have dedicated myself to his care, however long that might be.





But, it DOES suck, on so may levels, chief among which is watching the decline, day by day. It's bitterly sad, as you know.





Here are your ugly choices: place him in a hospice, and feel ferocious guilt about it forever.





Care for him at home and feel guilt that you ever do anything except see to his bathing, medication, companionship, feeding, changing, and so on.





The truth is, we can't win; whatever we do, it's got (as I like to say) some rat in it.





You're in a bad situation, having a young family which needs your love and attention as much as your dad does. Can you manage a home health-care worker a few times a week? It might be the difference between staying sane and total chaos.





I can't imagine how awful this is for you, but you have my sympathy for your father's illness, and my hopes that you will find a solution that, no matter how imperfect, you can live with.





My best wishes to you and your family.





-Victory.
Reply:Hi. I am SO sorry to hear the bad news!!! I've lost just about everybody in my original family, and for me, it felt like someone just whacked me real hard in the stomach. I took Hospice Volunteers training about 5 years ago, but I haven't pressed to get into it. But they are fantastic! They do everything for you. They give respite care in case you want to go out for awhile, you won't feel guilty. They give financial advice, emotional support, discuss with the family issues that the family doesn't understand, and they are there to provide "Grief Counseling" after their "friend" dies. I recommend them 100%. They really will make life easier. Again, I am really sorry. God is with you all.
Reply:i do feel very sorry for you , you could keep home with you,but its hard work, for you with the baby and twins on the way.but the hospice is so wonderful,and very caring and your dad would have the best of care,thats what i would do ,but if you think you could care at home then keep him with you, all the very best to you .
Reply:I'm really sorry to hear about your father.





Based upon his activity level - he doesn't sound neccessarily appropriate for hospice at this time. Unless something happened in the hospital to severely reduce his energy and excercise tolerance?





It also sounds like your father is capable of managing his own meds, if he was able to walk 3 miles a day. However, to make things easier I suggest the following --%26gt; get a poster board (or large sheet of paper) and divide it into four columns for AM / LUNCH / PM / and BEDTIME - and make as many rows as you need for the medicines. With each medicine, list its brand and generic name, and what its used for. I usually put an x in the columns when each of the meds are supposed to be taken (you know, AM/Bedtime or whatever). Make a copy of the poster to carry with you to all appointments, and update it accordingly.


Pill boxes can also be very helpful.





Hospice is a wonderful organization. For people who want to be or are able to be at home, they can help by providing a visiting nurse (not 24hrs a day), a counselor (to help you deal with death/dying), and equipment to use in the home to help care for your father.





There are some inpatient hospices as well, which tend to be for people who are at the very end of life with intolerable pain, etc.


Each hospice has different services and requirements - I recommend calling around and seeing what works best for you, and what services your father might be eligible for as a part of medicaid.





Lastly, you need to have honest discussions with your father about what kind of care he wants. He should consider becoming a DNR - do not recussitate - otherwise he may spend the last days of his life in an ICU, costing thousands of dollars without making him better.





I know it seems overwhelming, especially with new babies coming, but it is for a limited time, and I assume your father deserves all your love and support during this time. Good luck to you - remember, hospice is there for the family as well as the patient.
Reply:Yes, my father just passed away 12/22. He had a very rare disease called amyloidosis. He did not want to go to a rest home and I brought him home on hospice. Meds- I bought colored labels. I didn't have the time to look at each bottle morning, noon, and nite. I had all 22 in a box with colored labels on top. Yellow for morning, red for afternoon, and blue for nite. If you use a pill box, it tends to get to mixed up with a lot of meds. They may also change as well (adds or deletes). The nurses came by, checked vitals and offered wonderful support. When pain gets really bad, they will get him liquid morphine and ativan. It won't be pretty, but for me it was worth it. I was able to give him a huge gift by caring for him. I also got a notebook and a 3 hole punch to put all of his medical papers in so they were easily accessible. You need to know where all of his important papers are (deeds, loans, etc. ) Does he have a will and if so are you executor? If not, get one now. The banks will not talk to anyone until after the death certificates are in your hand. I'm still waiting on his. I can help you, if you would like. inkspotter2000@yahoo.com Sorry so jumbled. There is so much to tell you, but not here.


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