When to start hospice care
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Andy…..everything is falling into place nicely. I agree with Lainy, your Dad should eat whatever his heart desires. I assume that his medication is stepped up for breakthrough pain which in turn can cause constipation. If not already addressed, make sure to discuss with hospice personnel.
So happy you were able to enjoy a wonderful and memorable Father’s Day with all.
Hugs,
MarionDear Andy, sounds good! Bless Dad and his ice cream! What ever he wants, his wish is your command! How wonderful that you got to celebrate Father’s Day. I forgot to say that when Teddy first started Hospice at Home he did not appear that bad but the pain he had did increase and that is what has to be kept under control. Your Dad has a wonderful team working around him so keep the good news coming!
Thanks for all the information and kind words everybody. We ended up signing for Hospice last week. So far, dad has been okay, though when he get shoulder pains, it’s sever. He has an appetite and enjoys his ice-cream couple of times a day. We had a big Father’s day celebration yesterday, where most of our family was able to make it. He was pretty happy.
Again, I really appreciate all the support I get on this forum.
Andy –
A tough but wise choice at this time. Make sure hospice is aware from day 1 about his pain, make sure he does not down play it….and if he does try to talk to the hospice nurse one on one to explain the situation. If he had a port or a PICC line in then they can start Dilaudid IV and then he can get a small amount all the time and have a button to push when it gets worse….a PCA like in the hospital. You can try icing the area but I bet it is referred pain from his stomach.
Couple of things to remember….Oxycodone and Morphine come in several forms…..long acting given two or three times a day, short acting that work very quickly and liquids that can absorb in the mouth and work very fast. Do NOT worry about addiction. At this point that is the last worry. If a medical professional refuses narcotic medications due to the risk of addiction….find someone else. Also there are pain patched called Fentanyl which only need to be changed every 2-3 days. If he is in pain then he needs medicated.
The other thing is if hospice does not bring it up then please look at the Five Wishes which is a great way for the patient to talk about how they want end of life to be. I like it because it lets them make decisions. I will give you the link to one place to look at it.https://www.agingwithdignity.org/five-wishes.php
Good luck and feel free to email me.
KrisV
Andy…..you made a wise and important choice. Under the circumstances, your Dad is entitled to have each day the best it can be. Hospice will make sure of that. As soon as your Dad is relieved of his pain, your Mom will understand and accept the benefit of hospice.
Wishing for strength and sending tons of love your way.
Hugs,
MarionWOW! Great, Andy, wish I was there to cheer you on. You will be so relieved and like I said it can always be cancelled. Hospice does not mean the end it means comfort.
Dear Andy, I am so glad you thought this over as Hospice will hopefully get the pain under control. It is all so unfair on all parts but you have made the kindest and wisest decision. They will move Meds around until they find the best for your Dad. My Teddy was in Home Hospice for 3 months and he started with Morphine and it worked well for him the whole time. They just kept increasing it as needed. Dilaudid never worked for him nor did Fentanyl. Being on both of them and the fact they are not working shows that help is needed. There will be a lot of moments where Dad seems to feel better but the pain will return if not controlled. Best of luck to you and know that someone is always here for you.
My dad’s shoulder pain is getting worse. We are trying to treat it with Dilaudid and morphine but it’s not working too well. He also had a high fever last night (we gave tylenol for that). My mom is still reluctant to call hospice care but I think we absolutely need to sign up for it at this point. Mom thinks that calling hospice care is the end, which is probably the case. I think my mom needs couple of days to emotionally accept it
In the meantime, is there anything else that we can do for his pain?
Thanks for all the advice. I really appreciate it. Dad had a better day yesterday. He had some visitors and he was able to sit with them and talk. Mom is still reluctant to sign for Hospice but my sister is a nurse and she has taken some time off to be with him 24/7.
Kris – I may send you an email if I have a hospice related question. Sooner or later, I’m pretty sure we will have to sign up for it.
thanks a bunch,
Andyaanj…….Being told that no other medical intervention will achieve positive results is one is one of the most difficult things to accept. I feel for your Mom and applaud you for seeing things as clearly as can be.
I understand their reluctance of engaging with hospice, but In order to guarantee pain free comfort care, it is the best way to go.
When speaking with your Mom, you may want to emphasize that hospice personnel is trained to focus on the needs of the patient and family alike. And, as Lainy said, services can be discontinued at any time and therefore; it can be approached as an intermediate solution only.
You may also want to reach out the physician for clarification to any questions you may have and in particular for explanation re: further blood transfusions and the feasibility of your Dad receiving such.
The pain in your Dad’s should may very well be related to referred tumor pain. This is a not so uncommon occurrence and is addressed, as you are doing, with pain medication. Be aware for medication to cause drowsiness and constipation.
The fever, most likely is related to disease progression as well,I see that Kris has chimed in already with much more detailed information.
Thinking of you and sending tons of hugs your way.
MarionAndy –
It is a very tough situation, especially when one family member is in denial. I have been a home health and hospice nurse for years. My suggestion is that you/your family talk with your mom and explain to her that hospice is meant to achieve two goals – keeping him out of the hospital (at home) and comfortable. Hospice changes the goals from a “cure” to keeping him comfortable so they just treat the symptoms that you see such as pain, high ammonia levels, etc. Also you may be able to talk to hospice about the transfusions…..often times they will not pay for them but they will not stop you if you want to get them on your own….such as having your insurance billed for it instead. A transfusion can be considered palliative (to alleviate symptoms) and if you push hard hospice may still pay for it. I would also talk about quality of life versus quantity of life.
I am sure it would be better for your dad. We got hospice in for my husband but only three days before he passed. I wish we had been able to get them in sooner but he didn’t get really sick until just a few days before he died. I always would opt for sooner rather than later. Hope this helps some. If you want to ask more questions please feel free too email me. dazoo3563@comcast.netKrisV
Thanks a lot for answering Lainy! It’s a tough situation. I will keep you posted. We got him a walker and a wheelchair. I think getting him a hospital bed will help eventually.
Kindest Regards,
AndyDear aa_NJ, my husband was in home hospice for 3 months and I don’t know what we would have done without them! I have to be totally honest with you…..when in denial the patient suffers more. CC pain is sometimes very hard to get under control which is why you have to start at the beginning of pain. Not sure but I believe shoulder pain goes with the territory. My husband was on Morphine and it worked wonders. You can begin with Hospice and if good things happen and Dad gets better, you can always quit. I had them get Teddy a Hospital bed that I put in the light and airy living room as that is where the big TV was. Visitors could come and the Nurses had easy access to him. I also ordered him a walker, wheelchair and later Oxygen which helps the pain and relaxes the patient. Bottom line is comfort and your Dad is anything but comfortable. I know it is strange but when the time comes that we have to switch roles with a parent it is hard at first. Sometimes it must be done for the well being of the patient. Please keep us updated on your Dad.
I have only posted couple of times in the past but I often find myself referring to the discussion boards here every time I have a question about my dad who was diagnosed in May 2013. It was stage IV Cholangioncarcinoma that had metastasized in his gallbladder and liver.
Over last two years, he had undergone chemo, liver resection surgery, radiation therapy and more chemo. He was in and out of the hospital a lot but his (and my family’s) goal was always for him to live as long as he can. Two weeks ago we had a dreadful conversation with his oncologist where he informed us that there is no therapy available for him anymore. He suggested comfort care. Couple of days after that his ammonia levels went up, he had internal bleeding and we took him to urgent care where doctors said that he might only have a few days. They said that he might not leave the hospital. He got lactulose, hydration and blood. That made him feel better and he was able to come back home.
We had a meeting with the hospice nurse this past weekend who gave us all the details on the program. She said that he will be able to go on hospice the same day he signs the paper. My mom is reluctant for him to go on hospice, mainly because she is denial. Other reason is that in the past blood transfusion had made my dad feel better and hospice won’t allow that. Currently my dad feels tired/lethargic, he is aware but is sleeping a lot. His shoulder is hurting (on a scale of 1 to 10, he says the pain is 8. We are giving him dilaudid) – we suspect that it is due to a pulled (or weak) muscle. He constantly has a fever that we are treating with Tylenol. It seems that his weakness is a result of fevers.
Should I try to convince my mom to let dad go under Hospice care or should I wait and see if his situation improves?
I’ll appreciate all opinions/suggestions. Thanks!
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