How fast it all changed.

[indimom]

Rodeo, I am praying for you, your husband, and your children. You've been on my mind since your first post. I'm a hospice nurse in the US and just wanted you to know that your husband has been getting excellent care from what I have read. Initial diagnosis always takes some time. Sadly, symptoms of pancreatic cancer can progress very rapidly.
I've seen a lot of suggestions regarding cannabis and it's worth trying. But, the patients I've known who used cannabis, still required other pain medications for management with pancreatic cancer. It helped most with the anxiety and nausea from my experience. Pancreatic pain is nothing like the pain from other cancers.
If you want your husband home with you and the kids, tell him that... then, let him decide. And know that whatever decision he makes, it is based on his love for you all. Some people desperately want to be at home. Some do not. Some are willing to accept the day-to-day care from their loved ones when they are too ill to care for themselves. Some can't bare the thought of their family having to be with them minute by minute through this battle. Whatever he wants, even if it is not what you want, try to be okay with that.
After that, do what you need to do. Whether he chooses home or an inpatient facility, be with him as much as you want/can. Same for your kids. And take a break when you need to.
Know that your family will not be on the same page at all times. We all grieve in our own way and our own time. Your husband, you and your kids may have moments of ******* because of this. Just know that whatever someone says or does, they are doing it out of love or because they just can't bare how much it hurts. Don't let those moments become bigger than they need to be. Just focus on loving each other, supporting each other, nothing else matters.

 

[AnnaFloridaLover]

Rodeo, I am so sorry for what you are going through. I feel badly that I wasn't able to read this earlier but things have been hectic with my husband. We just had our first appointment at the cancer clinic and found out that his lung cancer has also spread to his bones, not just his liver. We heard the one year median survival talk and are now waiting to get genetic tests back to see if targeted therapy can give him an extra year or more. Fortunately he gets 5 days of radiation starting on Tuesday to try and make it easier to breathe and to now relieve pain in his back which he thought was a pulled muscle. We have to wait until May 1st to see the chemo oncologist who should have all tests back by then.

He had a chest x-ray on February 27th because of a stubborn cough. I totally understand how fast things can change and how hard it is to deal with everything that is thrown at you. I really hope that your husband is able to gain enough strength for chemotherapy. I have been thinking of you all week while dealing with my own nightmare. Strength in numbers. I have been stealing strength from your thread and it was the first thing I did when we got home. I still have to call the in-laws to update them.

I hope things take a positive turn for you. It is all too fast. You are always in my thoughts.

I'm really sorry that your husband's cancer has spread. Best of luck with his treatment.

 

[AnnaFloridaLover]

Rodeo, I am so very sorry to hear about your update. Love sent to your entire family. I can only imagine how shocking it is for you all.

Also to you excitedfamily.

________________________________________

2China2009, one of the issues in Ontario is the awkward separation of in hospital care and home care. That indeed is a true issue. As is the number of interviews one is put through if going back and forth between systems.

However, the support we have in Ontario for in home hospice care is beyond exceptional (Actually in home care in general). So "not good" doesn't even come near it. However, they can't be involved while the patient is in the hospital and here is the frustration of separation of care. And they have to have the diagnosis as well - a specific diagnosis - to jump in fully, and they just got it. But once again they can not jump into action while the patient is still in the hospital. When one is out and at home it is unreal the support that is given - not to mention the clarity, organization, and broad support team instantly looking after pain, anxiety, equipment in record speed and coordination. Educating at every turn. The team is overseen by a Nurse Practitioner and a care coordinator and includes a doctor, palliative nurse, PT and PSWs. All simply given. No applying, no payment. Heck so much of the equipment needed is "free". In quotes because we all pay into our country and province's services, of course.

And as my father's nurse used to say "a lot of people don't realize that palliative care at home does not pressure anyone not to fight anything or search out chosen care, if that is where they are at. Or simply to do nothing, if that is where they are at". It is not an either/or here in Ontario. And I think that's a wonderful stance/choice in care here. I remember my SIL telling me that in California a choice for palliative care meant a stoppage of other options for them. And they never made that choice.

I lost my brother and father within three weeks of each other, both of cancer. And it was a very hard lesson to learn that everyone sees their journey differently. Not to mention every family member as well. It was agonizing at times for me to see my brother fight up until the last minutes of his life, and all that brought to him both physically and mentally - how draining that could be for him and to see. At times I wanted to scream or cry about it all but I certainly did not want to bring any conflict to his family, wife and children. And was sensitive to that. But other parts brought me joy to see - my brother would travel in the worse physical state, grabbing whatever experience he could.

In contrast, it was comforting to look after my father in his home while he did the minimum needed and had his days filled with a bit more peace and ease of a day (my possibly slanted way of looking at it all but how I see it and saw it nonetheless). But it was agonizing for my brother and other loved ones to see our father not fight the same. They could not understand it. I saw my father as a man who had lived his life and was making an educated choice for his own life. But many were frustrated that he said no to certain avenues. His no to certain avenues made his last months filled with some wonderful memories in and out of the house. A huge lesson, hard to swallow. Everyone is different. Every cancer is different. You can decide what is right and wrong, but really so many people see things differently.
And it's tough to know that even if you love someone like no tomorrow, that it is not about us, our thoughts, our viewpoints - it is what they think is absolutely best for them. Hard to accept at times, but it is all our journey to choose. Anyway, rambling off topic now.

Rodeo, excitedfamily and others on here dealing with all of this, love sent to you.

LisaViolet, This is a beautifully written, intelligent, helpful and heartfelt post. Thank you, and I'm sorry for the losses you endured.

 

[AnnaFloridaLover]

Rodeo, my heart is breaking for you and your kids. Wishing you more strength to handle whatever happens today. One day at a time. Hugs.

 

[ronandannette]

Every system is just a little different, here in Alberta palliative care actually in a hospice facility is only for end-of-life situations where the patient is no longer taking active treatment and focussed entirely on comfort measures and the well-being of the family.

We chose to forgo an aggressive treatment plan for brother (who was profoundly mentally-handicapped) after receiving a diagnosis of Stage 4 lung cancer. The actual diagnosis took waaaaay too long, due to having to travel back and forth from a remote northern location to Edmonton several times. Once it was determined though, everything started moving very quickly. The prognosis without treatment was 10(ish) months, and DB actually got over a year of relatively normal health before he declined rapidly. He received all the support he needed in increasing measures at home during that time from professionals that knew and genuinely cared for him and understood our situation. We were very grateful for the quality of life he enjoyed during that time, as opposed to the suffering treatment itself would have inflicted.

He spent 13 days in a hospice facility and I still can’t stop raving about the amazing loving and competent care we all received there. They promised us he would not be in pain, and they moved heaven and earth to be sure he wasn’t. We were with him around the clock and the compassion we received can’t be fully described.

@rodeo65 don’t be afraid of the hospice facility if the time comes. You won’t regret it and personally, (my very humble opinion) I believe it’s better for the family, especially kids, to NOT have a loved one pass away at home.

 

[rodeo65]

lisaviolet, thank you for the excellent summation of our system and indimom, it's the palliative care nurses who I have relied on the most. They are telling me exactly what I'm dealing with in a very caring way. I've been told the team at the hospice house is outstanding and that it is such a warm place to spend your final weeks. Of course this is completely my husband's choice

My honest preference would be to have him in hospice where professionals can handle the medical needs and I can just be there, be with him but if he wants to come home, we'll have nurses in daily and make that work. I'm fairly intimidated with the medical side of things and that was what I hated about having him home. I kept a log of all his meds and when he took them, what he ate, BP and pulse but when anything goes sideways I am in no way qualified to handle that. It scares me. I have a basic first aid course from about 25 years ago. Always intended to do something more intense when we had the kids but never got to it. Plus, I'm pretty needle-phobic.

The palliative nurse, Dorothy, I hate to keep using her title rather than her name was telling us yesterday about this bath he can just soak in at the hospice - it's apparently on a gurney or something that can be raised to his bed level to get in. The way she described it I could see him just want to go there immediately. He's been having bird baths for weeks and hates that. I told him yesterday and will again today that whatever he wants is what will happen. Both of your posts summed things up so well. I'm heading over now, haven't heard from him at all since around 10 last night. I hope that means he's had a restful night.

ETA - ronandanette - we were posting at the same time. I agree with you about the kids dealing with him passing here. I don't think I want them to go through that, but again...his choice.

 

[mjkacmom]

Every system is just a little different, here in Alberta palliative care actually in a hospice facility is only for end-of-life situations where the patient is no longer taking active treatment and focussed entirely on comfort measures and the well-being of the family.

We chose to forgo an aggressive treatment plan for brother (who was profoundly mentally-handicapped) after receiving a diagnosis of Stage 4 lung cancer. The actual diagnosis took waaaaay too long, due to having to travel back and forth from a remote northern location to Edmonton several times. Once it was determined though, everything started moving very quickly. The prognosis without treatment was 10(ish) months, and DB actually got over a year of relatively normal health before he declined rapidly. He received all the support he needed in increasing measures at home during that time from professionals that knew and genuinely cared for him and understood our situation. We were very grateful for the quality of life he enjoyed during that time, as opposed to the suffering treatment itself would have inflicted.

He spent 13 days in a hospice facility and I still can’t stop raving about the amazing loving and competent care we all received there. They promised us he would not be in pain, and they moved heaven and earth to be sure he wasn’t. We were with him around the clock and the compassion we received can’t be fully described.

@rodeo65 don’t be afraid of the hospice facility if the time comes. You won’t regret it and personally, (my very humble opinion) I believe it’s better for the family, especially kids, to NOT have a loved one pass away at home.

Here in the US, hospice means you have stopped treatment, and you need a physician to sign off on it. My mom passed away at home, which was important to her. She de lined very quickly, and was only on hospice for two days, and during those two days, she had so many visitors who came to say goodbye, including my niece and nephews, who flew in for a day. My family was there the whole time, including my kids, and we held her when she passed. She had a full time caregiver that we paid (in addition to the hospice nurses that visited). It was very peaceful, and it was nice having so many family members there. Plus, her best friend was a nurse practitioner, and able to properly give her liquid morphine and Ativan (she was there the whole time).

 

[antmaril]

When my husband was dying, he wanted to go home. I really didn’t want him to die at home, but I wanted to respect his wishes. Everything was set. Hospital bed had been delivered, meds were delivered and an ambulance was ordered to take him home. Unfortunately, his condition took a turn that morning and the doctors decided he was just too unstable for me to handle him at home. I, quite honestly, was relieved. He passed in the hospital about ten days later. He was under Hospice care in the hospital. No treatment. Just pain management and IV fluids.

You are in my thoughts every day.

 

[star72232]

I am so sorry for your family.

I don't know where in Ontario you are, but if it's in the KW-Cambridge area and you need anything, please PM me. I can help get groceries, clean bathrooms, etc.

Many hugs to you and yours.

 

[Mokat76]

Rodeo, this is such a difficult journey. My heart hurts for you and your family. Whatever choices your husband makes; whatever choices you make; they ARE the right choices. Nothing in life prepares you for this. There’s no self-help book.
Follow your heart and your gut. I quit a great job to help care for my big brother. On paper, a stupid move. In my heart and soul, the absolute most perfect thing I ever have done. No regrets that I was there for him and my SIL.
If his heart tells him to fight, then fight hard. If it tells him to release, then find peace in that decision, as devastating as that is.
I am praying for you. My friends around the world are, too.

 

[JaneBanks]

I'm so sorry Rodeo. I lost my father to Pancreatic cancer 3 years ago. It is such a hard thing to see your loved one have to struggle with. My heart goes out to you, your kids and your husband.

 

[fhtpdw20]

Just got back from Disney and I am so sorry to read of the updates. I have no words of wisdom, just continued prayers. To be honest toward the end of DH journey, I just prayed Lord take him home and don't let him suffer any more. Your family will find a way to cope now and later. For us, DH wanted to be at home. He passed away in his son's arms. DS said DH took his last breath as soon as I left the room to call hospice. He would not let go with me in the room. It sounds like you have had the hard conversations of getting financial ducks in a row and funeral plans. I would encourage you and your kids to look at grief groups later on. They do help and in my group some have stayed years after they have dealt with the initial grief. Peace and Love to all.

 

[lisaviolet]

LisaViolet, This is a beautifully written, intelligent, helpful and heartfelt post. Thank you

Thank you.

I came on to edit it out as I wrote it very late at night. And sometimes that means that too much is on the page, so to speak. But I wrote it because I did want to touch on the thought that we do not have a good system here, not knowing emotionally it would go other places.

It has been healing to see my brother's choices more clearly and without my own slanted lens. He did what he wanted and was beyond a powerhouse. And it made it all easier that my SIL, niece and nephew all had the same viewpoint.

____________________________________

I also do want to add that one is not tied to the choice of in home palliative care in Ontario, at all. Meaning if one chooses that at first. They asked very direct questions about hospice care, to make sure everyone and everything is ready for that option if at any point it becomes a much better option for the patient, and the caregiver. It never came to that as my father was a person who was beyond focused at staying in his home. And it is unreal how one's capabilities can come out of nowhere in such an environment, especially with the extensive support our province provides.

_______________________________-

Also, these were their policies four years ago.

Every system is just a little different, here in Alberta palliative care actually in a hospice facility is only for end-of-life situations where the patient is no longer taking active treatment and focussed entirely on comfort measures and the well-being of the family.

Just wanted to add that in Ontario I'm sure a hospice choice, outside the home, means the same thing here. It was late, I was emotional, and I used very poor terminology at times.

He spent 13 days in a hospice facility and I still can’t stop raving about the amazing loving and competent care we all received there. They promised us he would not be in pain, and they moved heaven and earth to be sure he wasn’t. We were with him around the clock and the compassion we received can’t be fully described.

@rodeo65 don’t be afraid of the hospice facility if the time comes. You won’t regret it and personally, (my very humble opinion) I believe it’s better for the family, especially kids, to NOT have a loved one pass away at home.

Annette.

I'm sure it can't be fully described. The care our loved ones get is something in these kind of settings. Thank goodness.

The palliative nurse, Dorothy, I hate to keep using her title rather than her name was telling us yesterday about this bath he can just soak in at the hospice - it's apparently on a gurney or something that can be raised to his bed level to get in. The way she described it I could see him just want to go there immediately. He's been having bird baths for weeks and hates that. I told him yesterday and will again today that whatever he wants is what will happen. Both of your posts summed things up so well. I'm heading over now, haven't heard from him at all since around 10 last night. I hope that means he's had a restful night.

Hopefully he has Rodeo. What a difference that could make for him.

 

[ronandannette]

Just wanted to add that in Ontario I'm sure a hospice choice, outside the home, means the same thing here. It was late, I was emotional, and I used very poor terminology at times.

It was fine, and you’re fine - you always are! Your kind spirit shines through as you so graciously share bits of your own experience.

 

[gillep]

Rodeo, you are such a strong woman, I am in awe of you.

My MIL's family wanted to keep her at home during her pancreatic cancer battle, but towards the end she had to be taken to the hospital due to pneumonia and passed there a couple weeks later. I am thankful that she did not pass at home. In our circumstances I am positive that it would have been even more difficult than it already was to have her pass in the home. I also do not think that the family could have managed her severe pain at home, without round the clock expert nursing care.

I wish the family would have considered a hospice facility, I think that it would have been easier for everyone to enjoy the limited time they had with her if she were in a comfortable hospice facility with experienced caregivers.

Your family is always in my thoughts.

 

[hopemax]

When I hear when Brits refer to being "gutted," it seems like an odd and funny word. But reading your updates, there is no better word, and I'm just a random internet stranger. There are no words for what your family must be feeling.

My Mom wanted to die at home, and so we set up home hospice care. Her mother and oldest sister had arrived the day before she was transferred from the hospital, so that gave them the time to be in a more comfortable surrounding for a few days, share stores. We looked at a lot of pictures. My Mom's last "real" meal was a few bites of her Mom's homemade Italian, which felt so right. However, after they went back home, she started declining rapidly while still wanting to do stuff (like using the bedside commode instead of well, I don't need to type it out). But my Dad and I were quickly realizing we didn't have the skills to handle her in a safe manner. Thankfully, the hospice nurse informed us that a bed had opened at the smaller hospice house (they only had about 15 rooms, and it was set up more like a hotel than a medical facility). So after 10 days at home, she spent her final 36 hours at the hospice house. We had some moments of wondering if we had done the right thing, because she wanted to be at home, but I know it was easier for my Dad for her not to be there at the end. Like everyone else, the hospice care team was nothing less than wonderful. Prior to her starting care, she had been in the hospital for a month, "trying to get more stable." Had we known how things played out, we would have moved to hospice care sooner.

Also, because there are just so many things to think about here are a few more suggestions about what not to forget, while focusing on the most important bits (care, pain management, the business, etc) while in the middle of the whirlwind.

Record your husband's voice. I had a voice mail from my Mom where she ended with "I love you." I can't listen to it, but I know I have it. My Dad was always obsessive at clearing his out. So he didn't have any voicemails, and I wonder if he wished he did. It did take some work to get the message out of my voicemail box onto my computer. So making actual audio recordings with a phone, tablet or computer is probably easier.

While he is still cognitively strong, does he want to leave any goodbye messages for you, the kids, best friend, other family. Either written, audio, video.

Are there any family stories that he knows best. Childhood memories that only he knows, that your kids might want to know later. You think you know them, but then your brain turns to mush and then you wonder if you are remembering them correctly. Ignoring gender stereotypes, any recipes that only he knows. Or anything else, "fun secrets."

I was able to get some nice snapshots of my Mom with the closest friends and family that came to visit. Sure she didn't have her hair, and her face was a lot thinner. But in the better moments she would be smiling and relaxed.

My Mom shopped year round for gifts. So many months later, when Christmas rolled around, my Dad had things for me that came "from her." A friend of ours who knew he was dying, arranged for flowers to be delivered to his wife on every anniversary.

 

[maxaroni]

My mom was on dialysis so could not go into hospice until dad made the decison to end dialysis. She was in the hospital and a few days prior, my mom said she was done fighting and ready to go. We were processing that information but hadn’t said to end dialysis. By the final weekend, mom could not say to end dialysis, so it was in dads hands. Once he made that decision, we talked about where she would be for hospice. She could stay in the same hospital, but move to a different wing, or go home. Everyone was so helpful, the doctor called for hospice and a rep came to see us. It was a rainy Sunday evening. We said we wanted her home and they made it happen that night. DH and DS went to dads to be there for the hospital bed to be delivered. Once delivered, the okay for transport to home was arranged. Mom passed 2.5 days later.

@rodeo65 one thing that, I believe, was mentioned upthread but, if not, here goes. My moms hospice nurse came and said the goal was to have no pain. To make the transitions as pain free and peaceful as possible. Mom was not too bad the first day, or so. However, she had a heart attack and in extreme pain, hospice came and administered morphine and told us how often to administer it. At that point, she became nearly comatose,non speaking. My point being, if you have anything to say to each other, try and say it when your DH is lucid as you don’t know when he will slip into his final sleep.

With that being said, we were told hearing is the last to go so keep talking to him.

 

[anniemae]

Rodeo-If you are comfortable with it, could you pm me your and your DH first names? when I pray I like to use real names, makes me feel more connected. If you do not want to do that, no worries I totally understand. I will pray anyway.

I am so sorry for what is happening to you. I can tell how shocked you are. We are all here. We are all checking in on this thread. We will be with you no matter what happens.

 

[olliesmom]

I know you are getting a lot of input and advice so I hope this is not overwhelming - but just in terms of options, I don't know if any of the palliative nurses/social workers have discussed the possibility of a back-up application to an inpatient palliative care unit? If your husband does feel strongly about returning home, you can often request to have an application made to a palliative unit prior to hospital discharge with all the home supports in place (PSW, equipment, etc). Then, if you or he are starting to find it difficult at home you can "activate" the application and typically they will arrange for admission as quickly as possible. I'm not sure what area of Ontario you are in, but it might be worth asking if your hospital/palliative unit accepts these type of applications - again, only in the case that your husband feels like he does want to return home for a period of time.

Some other posters have mentioned making recordings of conversations with your DH to capture as many memories as possible. If that sounds like it would be something meaningful to you and your family, some standard questions that are used in end-of-life therapies with palliative patients and might give you some "conversation starters":

• “Tell me a little about your life history, particularly the parts that you either remember most, or think are the most important. When did you feel most alive?”
• “Are there specific things that you would want your family to know about you, and are there particular things you would want them to remember?”
• “What are the most important roles you have played in life (family roles, vocational roles, community service roles, etc.)? Why were they so important to you, and what do you think you accomplished in those roles?”
• “What are your most important accomplishments, and what do you feel most proud of?”
• “Are there particular things that you feel still need to be said to your loved ones, or things that you would want to take the time to say once again?”
• “What are your hopes and dreams for your loved ones?”
• “What have you learned about life that you would want to pass along to others? What advice or words of guidance would you wish to pass along to your (son, daughter, husband, wife, parents, others)?”
• “Are there words or perhaps even instructions you would like to offer your family to help prepare them for the future?”

Finally, this may or may not be helpful right now but the Canadian Virtual Hospice website also has a lot of really helpful information if you feel up to it: http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home.aspx

Continuing to pray for you, your husband and your whole family. Even through just this thread, his life has clearly had an impact on so many people and with us being a bunch of strangers on the internet, I can't imagine how much moreso that is the case for you, his friends, family and community who have known the "real" him. I continue to admire what an amazing family you seem to be, and pray for peace for all of you.

 

[#1hoosierfan]

I have nothing to add except I am thinking of you and your family.