Hospice Questions....

[Tuckamore]

My 81 year old father lives with us and I am the full time caretaker. The past year has been challenging to say the least.

My father has end stage lung disease and recently has experienced some mild to moderate heart failure. He has severe spinal structural issues that has resulted in back pain. He is prescribed Oxycontin and oxycodone for break through pain. He has been referred to the Hospice Program that should begin tomorrow. Apparently the only pain medication they will approve is Morphine which my father feels is a drug used to "kill you off." He may actually refuse Hospice based on that fact alone.

Has any one had experience with Hospice? Good or bad? Pros and cons? Any information and input would be greatly appreciated.

Thank You,
Tuck  

[jo929]

In the last stages of my daughters illness she had hospice in KC Mo the first bunch started when she was in hosp, and they called me, and i heard one of them yell at her and say tell your mother that you only have six weeks to live they did not know i was on the phone yet as i lived in ok my daughter beleived in God and was a woderfull person, ans she said maybe i will get better dont you beleive in miricles, and the one said this is ewality tell you mom what i said when one got on the phone i told them that if they ever yelled at my daughter again i would deal with them, also i told rhem she is dyeing are you going to take her one hope away, anyway i was not in good health, but i got to kc i m,anaged to stay a week she got a new hospice bunch and they were the most wonderful people ever they treated her with kindess dignity, and let her beleive in her mircles she passed away 2 weeks later in her sleep also they will not force him to take a medicine he does not want also my brother had hospice at home and he refuse the iv and the tube feeding he said that he preffered to just go quickly and not drag it out no they cant  force you to take the med, but it will help the pain and i have worked hosp and they can only give it as directed, it will also ease the pain, and if possible you may want to talk with him about the pain and if it gets to much he may take it my brother knew he was dyeing and just wanted to go without a lot of pain and fuss he passed away 6 months ago and my sis said hospice was wonderful i guess you get a bad apple in all things sometimes  good luck and Godbless    jo

[caregiver222]

I have only had experiences with two, and both were excellent. As for the morphine, it's the same opiate as in oxycontin and oxycodone, only it gets into the system faster. If the physician has nor prescribed a TENS electrical pain control device, ask him. They sometimes work as well as the opiates. I say "sometimes", but they are worth a try. The only down side is that they only offer palliative care. That lets out certain treatments that in some cases offer a very slim hope for remission.

[Tuckamore]

Thanks Jo and Caregiver for your input.

Hospice has started. Thus far the team has been very good. I only had one incident with one RN. I've taken care of my father in my home for 6 years in addition being at his side and providing care and support for ten years prior to him coming to live with us. I've been a nurse for many years. I know him like you most ppl know their children. I've also worked closely with patients and their families as they went through the death and dying process. One of the RN's talked down to me and treated me as if I knew nothing about my father or the medications he is prescribed. Before they arrived in my home I was his sole caregiver.  

You are both right they have not made him take the morphine. He is on oxycodone and Oxycontin that relieves his back pain but does not aid in his breathing. Liquid morphine seems to help in that area but he is a stubborn man and has refused it all but 3 times. He has rights and I can only offer. He denies it helps him but I can visually see that it calms him and allows him to breath better. His O2 sats improve on it also.

I am here all the time so I am able to monitor them. I too would not tolerate anyone raising their voice at him. I'm sorry that that happened to your daughter Jo. Losing a child must be an awful tragedy and my heart goes out to you. How cruel and unkind that caregiver was to your daughter. We all have to have hope or a dream. I am glad that you reprimanded her and that your daughter was able to have a kinder group. I have promised my father a trip to a warmer climate in mid winter, such as FL if his health permits. In my heart I highly doubt that will not happen but it gives him something to look forward to and to dream about and that is important right now.

He is very strong willed and determined and I think we have a long road ahead of us. My goal is to care for him at home as long as I can physically do so and make the remainder of his life as comfortable as possible. I admit I need the support of an agency but if they can not follow his wishes than I will be forced to continue to do this alone.

So far so good with Hospice but it is very early. Again thank you for your input.

Blessings to both of you.
Tuck