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My father is dying. Hospice is treating him at home. He was in pain but the are controlling that now.

I am going to visit tomorrow. I am not sure if I should do anything so I can talk to someone from hospice. One of the nurses or counselors. I think I am mentally prepared for his death. He has been struggling for the last few years and he is ready. But, maybe they can tell me something I don't know.

I don't know how long he has to live. It has been progressing quickly.

I can't talk to my mom about it. I would like to try to support her even though we don't have a close relationship, but I don't know how. She doesn't want to say anything except good things.

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My father had hospice care at home during his last four months of life. My sister lived nearby and she is in the medical profession, so she talked at length with my father's doctors, nurses, and hospice care workers. I think that made her feel better. I didn't feel any need to talk to them, though, because to me there's really nothing left to say. It's a waiting game and no one had any idea how long he would last once he was sent home to die. The doctors kept saying he had two weeks to live, so I would visit him, we would say our goodbyes...and then he would keep on living. We said our goodbyes several times during that year. I did stay at the house for a while, to give my mom a break from being his primary caretaker. Hospice was giving her some relief, so she could get out of the house every once in a while, but it made her feel better to have family there with him. My mom and I have a very strained relationship because she abused me throughout my childhood, but for the sake of my father I was willing to shut up and put up with her because she was being so good to him.

 

I guess what I am trying to say in my rambling answer is that there are no right or wrong answers. If you feel like asking a nurse or counselor some questions, go for it, but don't feel obliged to do so. If you feel like supporting your mom by giving her a break, go for it, but you don't have to. It would be very difficult for me to have gone through my father's decline and death if my mother had said only "good things" all the time. Fortunately she was realistic about his condition and chances, and we were able to have frank conversations about how he was really doing.

 

Consider counseling, either now or after he passes (or both). I didn't have counseling when my father passed away, and my husband couldn't relate to the situation, so I got through it mostly on my own, but it didn't have to be that way. I was reluctant to ask for help, and in hindsight I wish I had been more vocal. My father had been ill with cancer for five years and we knew it was terminal the last two years, so I too had a long time to prepare myself as much as is possible. The pain of loss is still overwhelming, even if you think you're prepared, but at least it's not such a shock, and you have time to ask those questions you've always wanted to ask him and to say your goodbyes.

 

I wish you the best of luck in handling an impossible situation. Hang in there. Let us know what we can do for you.

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Thank you Storm. I guess I will just see what happens. My sister gets involved to make sure he has good care. My brother has been coming over so my mom can run errands. He cutoff contact with the family years ago and now only sees my parents. I talked to him on the phone today. The first time in 16 years. I am glad he is there for them.

I guess I am wondering what is the "right" way to deal with this. But, there is no right answer

I called my tdoc and am seeing her when I get back from visiting,

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I guess I am wondering what is the "right" way to deal with this. But, there is no right answer

 

 

I'm sorry.  

You are right, there is no right way.

Home hospice care is a blessing. Hospice is there to make sure that no extraordinary measures are taken to prolong life when the quality of life recedes so much, there is no need for quantity of days.

 

I don't know if he is conscious, but the hearing is last to go. I have been to all too many rooms with the dying. I leave my worries and tears at the door, breathe in strength and peace, and walk in with love. Sometimes I just sat and rubbed feet. Othertimes I just sat and quietly talked.  My grandmother was staring but not awake. I told her grandpa was waiting for her and it was alright to let go. My  friend Michael's room was so peaceful, he comforted the visitors. He was ready to die. My brother was fighting with tooth and nail even though his life was miserable. But I fought with him, against all my better judgement. It was what he wanted. 

 

Just going is a gift. Your mom is dealing with this the only way she knows how. The fact that your dad is in hospice means your mom has an understanding of his pain. Many family members refuse to put loved ones in hospice care because they are unwilling to let go.  Whatever you do, whatever you say is the right thing.  With illness and death, nothing is easy, nothing comes fast. Your father is blessed to have you.

 

Sitting and holding his hand for a few minutes is a lifetime of love.  

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"Hospice" means something else where I live. My dad died at home; we had daily nurse visits, and bi-weekly doctor visits. We had a phone line that had a doctor on the palliative care team (they rotated through) on the other end. I think that that's what you mean? For me here, it was palliative care. I want to make sure that we're talking about the same thing.

 

You're right that there is no right way to go about this. We had a tonne of support both from the surrounding community and from the care team. It's good that you could get a tdoc appointment upon your return. 

 

One thing that I found was that I did a lot of my acute grieving while he was still alive. When he died in a way it was easier because I'd been looking after him for about 50 hours weekly for 4.5 months. But now it comes back again at times. It's really personal and individual. You'll do what you do and that's life. 

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Yes, palliative care.  I don't know how often he sees doctors but he sees the nurses regularly and my mom can call them. He is at home.

 

I am not really expressive usually when people die. My brother died and it was unexpected.  I got upset at times but not a lot. My mom has a scrapbook of people's memories and I couldn't think of anything.  

 

Thanks

 

 

Water, that is good to know about the hearing.  He is blind so he relies on his hearing a lot. I think it does mean a lot to them that we are coming to visit.

 

Thank you

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My sister organized a time today to meet with his nurse. She usually comes on Tuesday but she made time in her schedule for us. I really like her.  I didn't have any questions but it was nice to put a face to the name. She gave us her business card in case we have questions.

 

My dad is having a really good day. He doesn't have pain. He is sleeping now. My mom and sister went shopping.  I am here in case my dad needs anything. 

 

My mom keeps saying she thinks he is getting better and she doesn't think he needed hospice. I was trying to tell her he needed it for the pain without disagreeing. It's hard because she wants him to be okay and he's not.

 

She also needs the respite. A volunteer will come out twice a week for 2 hours. My brother is going to come one afternoon a week.

 

My mom was afraid to give him morphine so she has been giving him vicodin instead. My sister has convinced her to give it to him tonight when his pain comes back.

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My mum under-dosed my dad for a while, too. Ultimately we switched to fentanyl because it was easier.

 

I'm glad that you got to meet the nurse. She will be able to help you with anything that you need, too. They exist to support the whole family.  

One thing that I found helpful was to remind myself that the care team were equally dedicated to helping the family: having the services allowed me access to respite care when I needed it. It meant that I didn't have to find answers to questions myself, because I had somewhere to turn. At a certain point (and that might be where you are, I'm not sure) the care team is there to make life easier for those who are still fully living - because it's those who are fully living who are providing the care. The care team provides support to the care givers.

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My mom was afraid to give him morphine so she has been giving him vicodin instead. My sister has convinced her to give it to him tonight when his pain comes back.

 

vicodin is a morphine derivative. 

One thing I know about pain, it is very important to dose BEFORE the pain comes. Otherwise, you may end up giving someone even more pain meds that may not even work. LIke with a migraine, you want to head it off at the pass. The worst thing in the world is being ill and in pain. And I am sure that is the last thing your mother wants right now. I am glad your sister is there.

 

There are times where morphine does not help. When someone is young and wants to fight. the morphine may take that fight away. That happened with my friend Frank. They kept giving him more and more morphine, so he let go. It is possible he would have kept on fighting without the drug.

 

But this is not the case with your dad. They just want to make sure he is comfortable.  And the morphine may work quicker than the vicodin.

 

Most people think hospice means imminent death, and that is not at all the case all the time. Like Rosie said, they are there to help the whole family.  But at times like this, your mother will probably not be comforted by any statements from anyone. She will hold tight to her beliefs. There is not much you can do about that except what you are doing. Gently suggesting and keeping her talking. 

 

My SIL kept my brother alive long after he was ready to go, I believe. But....he was HER husband. He was HER soulmate. Not mine. THis was a hard lesson for me to learn. 

 

You are doing wonderful, the very best you can. Just like everyone in these awful situations. One day at a time. One breath at a time.

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I guess I am wondering what is the "right" way to deal with this. But, there is no right answer

 

I'm sorry.  

You are right, there is no right way.

Home hospice care is a blessing. Hospice is there to make sure that no extraordinary measures are taken to prolong life when the quality of life recedes so much, there is no need for quantity of days.

 

I don't know if he is conscious, but the hearing is last to go. I have been to all too many rooms with the dying. I leave my worries and tears at the door, breathe in strength and peace, and walk in with love. Sometimes I just sat and rubbed feet. Othertimes I just sat and quietly talked.  My grandmother was staring but not awake. I told her grandpa was waiting for her and it was alright to let go. My  friend Michael's room was so peaceful, he comforted the visitors. He was ready to die. My brother was fighting with tooth and nail even though his life was miserable. But I fought with him, against all my better judgement. It was what he wanted. 

 

Just going is a gift. Your mom is dealing with this the only way she knows how. The fact that your dad is in hospice means your mom has an understanding of his pain. Many family members refuse to put loved ones in hospice care because they are unwilling to let go.  Whatever you do, whatever you say is the right thing.  With illness and death, nothing is easy, nothing comes fast. Your father is blessed to have you.

 

Sitting and holding his hand for a few minutes is a lifetime of love.

That was so beautifully well-put:) ......brings tears to my eyes....

You can ask whatever questions you want....they have a short book that helps too so you know what to expect.

What i found most peaceful(?) is that all the workers do it because its their calling, their purpose...and its not maudelin or misery to them....they all have this attitude of gratefulness....greatful to ease suffering and honored by their being able to help the dying person and their family. Wonderful people they are--true angels.

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Reading this brought back memories for me. I'm so sorry for what you're going through. 

 

The hospice folks are there partly to answer questions, so if you do think of any, they will be gracious even if you cold-call them to ask. My personal experiences with hospice, of which there have been several, have always been positive. The hospice nurse who visited my mother, and later my father, still recognizes and greets me by name, and it's been years. It's been my experience that, when they say they want to help, they mean that. 

 

Death can be a confusing process. There are a lot of small things that can't be predicted, but hospice has visited so many that they understand those pitfalls, and they are there to help navigate them. It might be worth it to ask them if they have any advice on if, or how, it might be possible to help your mother come to terms. They will have seen a lot, and they might be able to offer you some insight from their own experiences, if you want it. Like you said, though, there is no "right" way. There is only the best you have, and every person's best looks different. 

Edited by Mim
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