Talk to me about pancreatic cancer/hospice

[Ottakee]

This morning I took MIL to the hospital for some tests and a biopsy came back positive for pancreatic cancer.

 

She is 71, has had a kidney transplant, has a pacemaker, and has possible spots on the bladder and native kidney as well. Given that she is not a candidate for surgery or chemo which leaves us with care and comfort and a 6-12 months time line.

 

Any experiences here? She is a widow and my husband is her only living child.

[barnwife]

My dad (the same age) has pancreatic cancer. It sucks. FWIW, until this he was relatively healthy. His was discovered in March. Only 1 in 5 are still living one year after diagnosis.

A friend, whose mother died of cancer a few years ago, had one piece of advice: don't be afraid of hospice. She regrets they didn't call hospice for her mother earlier.

Thankfully, we are not there yet with my dad.

Basically we try to spend all the time with my dad that we can.  I would get all of her finances and things in order. I would plan/have her plan her funeral. I would discuss POA and who will make decisions for her if/when she can't. If she is still in her own home/apartment, she might want to help downsize.

Really I am just here commiserating. This sucks and I wish no one had to deal with it.

[SebastianCat]

I'm so sorry.    My DH's cousin was diagnosed with pancreatic cancer at Thanksgiving several years ago and passed away the following February.   Her diagnosis was a complete surprise.   She did end up in the hospital several times during the course of her treatment, but only for comfort measures, and most of her care was coordinated by hospice.

 

The most important things to do in the short term are to coordinate legal documents.   Make sure your MIL has a POA in place, a DNR order, and a will.   Add your DH to all of her bank accounts right away, and make sure he is a "joint owner" of the account instead of an "authorized user."   She will probably need to go to the bank in person to make these changes, and your DH should be with her as well, so I would do this ASAP while she is still able.  

 

The banking situation was really sticky when DH's parents passed away.  There was one account to which he was an authorized user as POA for his mom, but as soon as she passed away, his access to the account disappeared, because the POA ceased to exist upon her death.   If your DH is a joint owner on all of her accounts, he will have access to be able to pay her bills while she is alive but also after she passes.   

 

How is your MIL handling this?   How is your DH?

[OneStepAtATime]

:grouphug:  :grouphug:  :grouphug:

 

My dad died of Pancreatic Cancer.  They misdiagnosed him twice so it was a year before they finally realized what was wrong.  He was dead within months.  It was the experimental treatments that made his life a living hell, not really the cancer, but he knew he wasn't going to make it and he hoped volunteering as a guinea pig might help someone else.

 

Dad spent a lot of time trying to get his affairs in order before he felt too bad to do so.  He arranged details for his funeral (including the casket, funeral home, etc.), sold off property to get rid of debt for my mom's sake, talked frankly with my brother, mom and I about his wishes/business concerns/personal needs, and got as much paperwork taken care of, including updating his will, so that Mom would not have nearly as much to deal with.  Unfortunately he was trying to restructure the company just days before he died, which created a massive headache afterwards.  Although we knew he didn't have a lot of time, he was still so functional (even asking me to pick up sandwiches just minutes before his systems started shutting down completely) that we didn't realize how little time we had.

 

Your MIL might do o.k. until closer to the end.  Let her get her affairs in order with your help, and do it soon.  She might have a lot of time but she might not.  And it may be hard to judge until suddenly she just takes a turn for the worse and starts a rapidly decline.

 

Look at POA, medical POA, determine if she wants  a DNR order, maybe suggest to her to give away things that matter to her that she wants to go to specific people (she could write out or dictate an explanation of what the something is, why she is passing it to that person and why it mattered to her), check to see if she will need a will (if she doesn't have one), etc.  With regards to wills, even if there is only one clear heir sometimes, depending on state laws and what she has (even if what she has doesn't have much value), a will can cut through a lot of really tedious and time consuming red tape.

[retiredHSmom]

My MIL was diagnosed with pancreatic cancer in mid-July ( a few years ago) and died six weeks later. She was told 6 days to 6 months.  She was really only debilitated in the last three days. She was 76 years old and in very good health before the diagnosis.  I still miss her

[OneStepAtATime]

I'm so sorry.    My DH's cousin was diagnosed with pancreatic cancer at Thanksgiving several years ago and passed away the following February.   Her diagnosis was a complete surprise.   She did end up in the hospital several times during the course of her treatment, but only for comfort measures, and most of her care was coordinated by hospice.

 

The most important things to do in the short term are to coordinate legal documents.   Make sure your MIL has a POA in place, a DNR order, and a will.   Add your DH to all of her bank accounts right away, and make sure he is a "joint owner" of the account instead of an "authorized user."   She will probably need to go to the bank in person to make these changes, and your DH should be with her as well, so I would do this ASAP while she is still able.  

 

The banking situation was really sticky when DH's parents passed away.  There was one account to which he was an authorized user as POA for his mom, but as soon as she passed away, his access to the account disappeared, because the POA ceased to exist upon her death.   If your DH is a joint owner on all of her accounts, he will have access to be able to pay her bills while she is alive but also after she passes.   

 

How is your MIL handling this?   How is your DH?

Yes to these!

 

Oh. and you might look at utilities for her property.  It may make life easier if utilities are in your DH's name as well as hers.  

[OneStepAtATime]

Hugs to all.  Cancer sucks.

[Catwoman]

I'm so sorry. :(

[PinkyandtheBrains.]

 

<hugs>

 

All I can say is that hospice is wonderful. My grandparents were in hospice, and it seemed nice. It wasn't until my own parents went into hospice before they died that I realized how much help and comfort they really offer. While the focus is the patient, it really is extended to the family.

 

In the case of both my parents, Dad last October and Mom last month, they were in hospice at the hospital. They made everything smooth as possible, kept my parents comfortable as possible.

[iamonlyone]

My mom was diagnosed last Dec. 23. Once things are in order, hit the bucket list! I took my mom to the Colorado Rockies (her all-time favorite place and the area she lived for many years) in June where we helped her hike and invited Colorado friends and family to drive up and hang out with us. Take lots of pictures. Put them in Shutterfly, or the like, books. My mom loves paging through her Colorado book.

 

We had a huge 80th bday party for her in July, with over 200 people coming from seven states. She had a dinner catered with all donations going to the senior center in her town. I made a big picture board. My 17 yo made her a fancy cake. My nephew played the piano.

 

We had an eclipse party on her deck with lots of friends. She plays bridge and is working with her church to decide how best to leave money to benefit the congregation.

 

So, after all the details (or at least the most vital ones) are in place, I suggest that, if she feels up to it, you brainstorm about things she would love to do and people she would love to see.

 

Hugs to you. It is very hard. My mom is an overcomer, but this time she can't beat it, and not being able to do anything (diet, rehab, exercise, etc.) to help much is very difficult for her.

 

ETA: Record memories of her life in some way. This is something I need to work more on! And remember, for anything you want to do together, sooner is better. Take advantage of any seasons of feeling really good if she has them.

Edited September 1, 2017 by iamonlyone

[goldberry]

Hugs to you all.  Cancer is such a b*tch.

[Ottakee]

Thanks.

 

We already have a will that we recently modified (but will further update...call was already into the lawyer before today). I have POA for personal, medical, and financial, and she does have a DNR in place already.

 

I am sure we will be linked up with hospice in the next 1-2 weeks.

[iamonlyone]

Another thought: Caringbridge.org has been really helpful to me. It was too hard trying to get updates to different groups of people, and I knew I would eventually forget someone.

[ThisIsTheDay]

I'm so sorry. My aunt received her pancreatic cancer diagnosis. While she was given a treatment option, it only would have extended her live 3-6 months, and after seeing a friend go through that (radiation? chemo?), she chose to not treat it. She lasted about three months. We visited, and she was still living in her home, with her sister staying and cooking/cleaning for her. Within two weeks of our visit, she passed away.

 

It's all awful. But it seemed she had it better than most people, not lingering in a horrble state for a long time. Which makes me feel terrible to say. I know there's no optimum way for one's life to end, at least imo.

[Seasider]

I'm so sorry. My DH's cousin was diagnosed with pancreatic cancer at Thanksgiving several years ago and passed away the following February. Her diagnosis was a complete surprise. She did end up in the hospital several times during the course of her treatment, but only for comfort measures, and most of her care was coordinated by hospice.

 

The most important things to do in the short term are to coordinate legal documents. Make sure your MIL has a POA in place, a DNR order, and a will. Add your DH to all of her bank accounts right away, and make sure he is a "joint owner" of the account instead of an "authorized user." She will probably need to go to the bank in person to make these changes, and your DH should be with her as well, so I would do this ASAP while she is still able.

 

The banking situation was really sticky when DH's parents passed away. There was one account to which he was an authorized user as POA for his mom, but as soon as she passed away, his access to the account disappeared, because the POA ceased to exist upon her death. If your DH is a joint owner on all of her accounts, he will have access to be able to pay her bills while she is alive but also after she passes.

 

How is your MIL handling this? How is your DH?

Very good info above about joint accounts and POA. Just adding that hospice is typically covered 100% via Medicare, so don't let fear of cost keep you from calling. And yes, better to call sooner than later. Hospice provides many valuable benefits even before the last days.

[Seasider]

<hugs>

 

All I can say is that hospice is wonderful. My grandparents were in hospice, and it seemed nice. It wasn't until my own parents went into hospice before they died that I realized how much help and comfort they really offer. While the focus is the patient, it really is extended to the family.

 

In the case of both my parents, Dad last October and Mom last month, they were in hospice at the hospital. They made everything smooth as possible, kept my parents comfortable as possible.

Just to clarify for those unfamiliar with hospice, it can refer to both a place (i.e., a hospice house or hospice wing) and a service. Hospice will serve patients in their own homes.

[kewb]

I will second don't be afraid of hospice. But research carefully. Not all hospice are created equal. The right hospice is a blessing.

Pancreatic cancer took my father. He knew for a few months before he told anyone. From the time he told us to when he passed was weeks. He had a stroke the day before he was supposed to start chemo and that was it. He was gone in days. He never left the hospital.

[Guest]

Thanks.

 

We already have a will that we recently modified (but will further update...call was already into the lawyer before today). I have POA for personal, medical, and financial, and she does have a DNR in place already.

 

I am sure we will be linked up with hospice in the next 1-2 weeks.

 

My godmother is a hospice nurse, and told me (related to a question I had about someone we love) that the sooner you get involved with hospice, the better.  There are a lot of things they can do, that they cover financially, and that they offer not only in support of the patient but also of the family.  In addition, they do a lot of palliative care, which makes latter days more comfortable for the patient but therefore also for those who love her/him.

 

I'm sorry that this is the Next Thing that Must Be Faced.  :0(

[PinkyandtheBrains.]

Just to clarify for those unfamiliar with hospice, it can refer to both a place (i.e., a hospice house or hospice wing) and a service. Hospice will serve patients in their own homes.

 

Sorry if I wasn't clear, that's why I mentioned they were actually at the hospital for it. They were never stable enough to send home for hospice.

[FaithManor]

Please do not wait to apply for hospice. They provide so much help with navigating end of year processes. Unfortunately because my parents had been convinced by some conspiracy theorists that hospice goes around euthanizing people, they waited until four days before he died to actually acquiesce to having hospice in. This was very unfortunate, and hospice was WONDERFUL to them.

 

Local hospice served them in the home. He was in pretty bad shape, and really my mother could not adequately handle him at home. But the only hospice facility within any kind of reasonable commuting distance was $200.00 a day, and they did not have the money nor insurance to cover that. Hospice to the home was free. 

 

So I say make that phone call now, and then make sure your husband as the POA stuff well in hand as quickly as possible. She might last 6 months, and she might last a week. It is so hard to say, and you really need to have those legal ducks in a row so he can settle her affairs.

[PinkyandtheBrains.]

 

 

Echoing a previous poster, Medicare covered the cost of hospice.

[Ottakee]

The Friday of a holiday weekend is not optimal for this. We see her primary care doctor on Tuesday and will get the ball rolling on hospice.

 

Our main need will be pain control when it gets to that. Sadly I have been the "go to" person for a few people in similar situations already. I understand that pushing the pain meds might hasten death but the reality is that it gives those last months, weeks and days a much better quality of life.

 

Right now she is fully able to be home alone and care for her needs, drive, etc but I know that might change rapidly. As of now she is pain free as well.

 

Another thing we need to do is have her either sign the car over to me or add me as joint owner with survivorship....need to figure out what is best.

[Seasider]

Sorry if I wasn't clear, that's why I mentioned they were actually at the hospital for it. They were never stable enough to send home for hospice.

I understood you! I'm sure it often happens that a person cannot utilize hospice at home. I just wanted to mention it because many think hospice is only a place you go to, and don't understand that the service can be used in the home if patient circumstances permit.

[Laurie4b]

The book, "On Being Mortal" is very helpful. 

[applethyme]

I am so sorry.

 

A few things I have learned along the way:  studies show doctors over estimate life expectancy after a terminal diagnosis by 60%.  With pancreatic cancer, pain isn't the only symptom that needs management, nausea is one of the most common symptoms.  Think ahead, no one wants to plan their funeral but really it is the best gift they can give their family.  

[iamonlyone]

Since your MIL is doing well now, you might look for a group that offers palliative care that can transition to hospice. Palliative care offers support and lots of know-how about managing pain, and the patient can receive some types of medical care that she cannot with hospice.

 

My mom's oncology nurses and the area hospices here confirmed for us that my mom could not receive an IV if she is on hospice. She had a rough few weeks last month and was losing fluids faster than she could take them in (diarrhea). Her oncology team gave her a saline IV a couple times that week, as well as potassium through the IV as her potassium level was low. She will not be able to have that kind of intervention when she transitions to hospice. So, you might check for a spectrum of care. Many groups offer palliative and hospice, but some offer only hospice.

 

ETA: My mom is still living independently at home, driving, etc. too.

Edited September 1, 2017 by iamonlyone

[Twigs]

:grouphug:  :grouphug:  :grouphug:

[Annie G]

I'm sorry. Cancer sucks.  :grouphug:

[wonderchica]

I'm sorry. Pancreatic cancer is a beast. It is usually fast-moving, and it usually isn't diagnosed until "too late" because there are few/no symptoms. I would take advantage of the good days you have now for planning/any bucket list type activities, as she may go downhill quickly. I agree with a previous poster that having her write down her wishes for her funeral is extremely helpful to the family afterwards. My great aunt even picked out her clothes, and we were very happy to know we were able to do exactly what she wanted. It was comforting.

[Tiberia]

My mom died of this. You've gotten great advice so far.

 

I would suggest that you have someone help "guard" your MIL's energy level and ability to receive visitors. People and very well-meaning and want to visit, but it can be exhausting and very taxing for the patient. Let your MIL know that she can say no to visitors, or she can give you permission to turn people away when necessary. Let friends and family know that you will read all cards and emails to MIL, and that she is grateful for them, but she's not always up for visitors.

 

Your MIL may want any and all visitors, but people are different, and she may need privacy to conserve her strength.

 

Blessings to you all.

[mominco]

:grouphug:  :grouphug:  :grouphug:

[Word Nerd]

Hugs to all. Cancer sucks.

This. I'm so sorry.

[PinkyandtheBrains.]

 

 

Also, hospice isn't a permanent choice. You change and stop hospice if you want to, and then continue it later.

 

I doubt this is an option that is utilized often, but sometimes it's comforting to know you can change your mind as often as you want.

[Melissa in Australia]

Hugs

My neighbor died of pancreatic cancer this year. She had 3 weeks from feeling ill/ hospital/diagnosis to death.

Edited September 2, 2017 by Melissa in Australia

[applethyme]

All hospices are not created the same.  Some will allow IV fluids, some won't.  Some have staff that makes visits at nights and weekends and some are only available by phone.  If there is more than one hospice in your area, have them send you information and look to see which one will best meet your needs.

[Guest]

All hospices are not created the same. Some will allow IV fluids, some won't. Some have staff that makes visits at nights and weekends and some are only available by phone. If there is more than one hospice in your area, have them send you information and look to see which one will best meet your needs.

This

 

And hospice and what it means varies state to state.

 

My dad was on hospice and it was bad. Then we changed hospice organizations and overnight it was wonderful. Local ownership, local management, and enough employees to have areas of expertise and true availability---these things made a difference.