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My father has pancreatic CA and is dying at home....

Started by lisa48

24 Feb 2012, 4:08 PM

My father was diagnosed with diabetes in October of 2011, but after losing about 40lbs in 2.5mos, we realized that it was pancreatic cancer that was truly the culprit. He was officially diagnosed with the cancer in January and is now barely eating and his weight is very low. My concern is that I live 2.5-3hrs away from my mom and dad, my mom has a hard time getting around with a bad hip and knees, and soon, my dad will no longer be able to get around on his own (they live on the lake with only a few neighbours nearby and no other family in the area).
I wanted them to come live with us, but my dad doesn't think he can make the trip here, and my mom has concerns about my 3 children watching their grandfather die.
What can I do? What can my mom do? How do we get started with home care? If he can be sedated enough to make the trip to me, then how do we get referred care from his home town?
We are really at our wits end right now. I need to keep working or at the very least, go on a leave where I can be compensated with UI, but I only have 6 weeks of compassionate care....and we don't know how long we have....we may have more.
I am really confused as to what to do and any advice would be appreciated.

Thank you
Lisa

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Reply by NatR

24 Feb 2012, 9:40 PM

Dear Lisa what a difficult situation you are facing. I would say call locally to find out what support you can get through CCac - and consider bringing your parents to your area if possible.

Your mom isn't able to do the caregiving and your dad needs support. If you are the only child who is close enough to help them, it's sounding like having them there will be the most sensible solution.

I dont know the ages of your children - but if they are old enough to understand the serious nature of your dad's illness - they will see that you are standing tall and taking care of your parents.

Death and birth are parts of our lives. Your desire to give this gift of caregiving is a wonderful thing and will demonstrate to your children that having your parents close - and helping then through this - is important. It's a life lesson that a lot of kids never see.

I also understand your need to work and have income. Not being a medical person, but hearing the story - my heart tells me you should consider taking the leave from work and spend that valuable time with your dad and mom. Then see how things go. You won't regret the gift you give your dad- and your mom will appreciate your support so much.

I hope you will stay in touch and let us know what happens.
Hope I have helped in some way

Nat

Nat

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Reply by Cath1

25 Feb 2012, 7:46 PM

Hi Lisa48

I'm so sorry that your Dad is seriously ill and that his health deteriorated quite suddenly after he and your family first thought he had a treatable illness. You certainly have a lot to cope with since this news about your Dad's health. I think Nat gave you wonderful and sensitive advice and I hope you will consider all your options. If you are located in Ontario the Community Care Access Centre (CCAC) in your area, or your parents area depending on where they will be living throughout your Dad's illness, should be able to provide you with many of the answers you seek. I have attached a link for you.

http://www.ccac-ont.ca/

Do you feel that you can accommodate both your Mom and Dad in your home for what may be an extended period of time? Have you considered the practicalities and the emotional toll this decision may have on all involved? Your parents may feel overwhelmed at the very thought of becoming uprooted as I imagine their lakeside home is a source of security for them during this very stressful time. It's so commendable that you offered to have your parents come stay with you, but should you or they come to the conclusion that it is not a workable solution for your particular situation, please know that too would be perfectly okay and you will not have let them or yourself down in any way. If they do decide not to move in with you, they definitely will need help locally. Perhaps you can make the trip on weekends to see them more often if they decide to stay put. You have a family to look after as well but at times like these even children can understand the sacrifices required of all the family.

I can relate to your Mom's worries about having your children witness and even particpate in your Dad's care as she naturally wants to protect them, and she likely wants to protect you as well, and although well intentioned she cannot spare you or them from the experience of your Dad's illness or his death if and when it happens.

My daughter and son-in-law cared for his mother "Mary" (not her real name) in their home during her last few months. When "Mary" was ill with cancer and it was fairly evident that she would not be able to maintain her independence and that in fact she was soon to be facing her death, her son of course wanted to do what was best for his Mom. As much as I could empathize with "Mary" and my son-in-law's wish to be with his Mom throughout her illness, I also felt worried about the arrangement because my grandchildren were very young and yet old enough to take everything in. I didn't want them to be traumatized by watching their beloved Grandma suffer and then die in their home. I also wanted to protect my daughter as I knew this would be a very difficult experience and yet at the same time I knew it would be a genuine labour of love and that ultimately the situation presented each person in the situation with a great opportunity to grow and to share an experience that many people will never know. There is no right or wrong answer and it is always a personal decision and best made with eyes wide open and honest input from everyone involved.

At that point in time my own experience with death was limited and I had never experienced the death of a loved one up close and personal. I voiced my concerns to my daughter but I also told her that while I didn't have direct experience to call upon to help her, I assured her that I would be there for the whole family in whatever way they needed. I also told her that while I did have some worries, I also had confidence that she and her husband and "Mary" could handle whatever was required of them and that they could always reassess their decision along the way if ever it became too much for them to cope with.

So, after serious consideration and discussion they decided that "Mary" would move in with them. She felt sad to lose her independence but also grateful to have been welcomed into their home where she felt comfortable, safe and very much loved. She delighted in spending time with our grandchildren and she spent many intimate and loving moments with her son and my daughter. I was actually amazed at how well they all did in the circumstance and "Mary's" courage was astounding to me. I learned a lot about relationships and life and death by this extended family experience. Having this dedicated time together when my son-in-law took a compassionate leave of absence from his work which fortunately was paid time off, and my daughter was a stay-at-home Mom, it proved to be a precious gift in the end not just for "Mary" but for them all - grandkids included.

My daughter called me a few days before "Mary" passed away and I went to their home and joined my son-in-law and daughter and grandchildren as we spent day and night with her consoling her and offering her comfort. There was a wonderful homecare nurse who also came daily to help with medications and just to offer "Mary" and my daughter and son-in-law support and guidance. When the end came for "Mary" it came quietly and peacefully as she simply let go as she slept.

I know that whatever you and your family decide to do in the situation for your Dad, it will be the right decision for you all. I'll be keeping you all in my thoughts and prayers as you prepare for whatever comes next. Please reach out if and when you feel the need. We are all her to listen, to care and to try to help.

All the best, Lisa48 as you continue to be brave even when you feel you are not. You are!

VHcath

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Reply by Cath1

30 Mar 2012, 2:57 AM

Hi Lisa48:

Just checking in with you to see how your Dad is doing and how you are finding life these days.

Thinking of you and keeping your Dad and you and yours wrapped in warm wishes for comfort.

VHcath

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Reply by lisa48

01 Apr 2012, 1:36 AM

Hi everyone

I'm sorry I haven't posted in a while. We are having a HECK of a year. Shortly afer I posted this, on Mar. 1st, we had a house fire. We are all ok, and didn't lose the house completey, but have been living elsewhere for a month and probably out for at least another month. I guess the decision has been made for me about where my father should be.

He is still at home and will stay there. He has a nurse coming every two days to check on him and give my mom (and us) support. Knowing she is coming is a comfort since we can't be there all the time with the distance between us. Dad is very frail and weak now and only drinking maybe a bottle of water a day, maybe a 1/4 cup of cereal or an egg in the morning and that is about all. He is proabably about 115, maybe less....for a man who is normally 180-190lbs.

He is starting to have strange dreams, almost hallucinating, and the other day, when getting out of bed, his knees buckled and we had to catch him. Luckily my brother and I were there to help, but it really worried us to know this might happen with just my mom around....her hip is bad...what if they both fall?!!
The nurse told us that hallucinating and strange dreams are all part of the process, but I asked if maybe the Hydromorph that he is taking (every 12 hours) is too strong now that he has lost so much weight. She said she could talk to the doctor, but my mom is worried that if we decrease his dose, he might be in pain. Luckily though, he has not had pain so far, so why not try the lower dose and cut the risk of a fall, and maybe he would be more alert. I notice he's getting confused lately in his thoughts, and I know this can easily be blamed on the Ca, but what if it's just a matter of the pain meds being to strong. Anyone have any experience with this? Some people I know that have had a dying relative, had the same thing happen...some lowered the dose of pain meds and the patient was better....at least for a while.

Anyway, we are trying to deal with a lot right now, I'm tired, but I need to try to see my dad as much as I can. He is a wonderful man, a very loving father, and treated my mom like a princess. They love each other so much. They have dated since my mom was about 15 and it breaks my heart to know they won't be able to be together anymore. I will miss his advice, and the time and patience he devoted to my kids.

Thank you all for your advice
Lisa

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Reply by Cath1

01 Apr 2012, 1:50 AM

Hi Lisa48:

Thank you for taking the time to update us, but feel no pressure to respond unless you feel able and need the support here. We understand what you are going through and we want to be here for you in whatever way you need. Even when you are silent, we want to remind you that you are never alone.

I'm so sorry to hear about the fire! Thank goodness no one was hurt, but what terrible timing for such a thing to happen to you.

I think you are doing the right thing to raise questions about your Dad's medications, but if his sedation is actually helping your Mom to manage his needs better you may have to accept the situation. I will be hoping that you and your Mom will feel satisfied with the answers you receive from your Dad's doctor.

There is such a shortage of adequate homecare for those in your parents' situation. I will be thinking of you all and keeping you in my heart and in my prayers.

Try to get some rest and respite from your worries whenever possible. Take care, Lisa.

VHcath

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Reply by NatR

02 Apr 2012, 1:05 PM

Dear Lisa48

I am so sorry to read of the house fire. Just when you don't need one more thing to deal with. Thankfully no one was injured - but it is a shock and another complication.

Glad you were able to update with a note.
VHcath has responded to your other concerns and I do hope that you are able to feel comfortable with all the changes - with your dad, the effect of the meds etc.

It is going to be a difficult time for you - and the advice from VHcath to take care of you is so important.
Will be thinking of you and your family
Best wishes, Natrice

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Reply by lisa48

18 Apr 2012, 11:36 AM

Hi

We are having trouble keeping him comfortable lately. The pain management is under control, but he is wretching anytime he gets a little sip of water. He is so thirsty and wants to drink, but everytime he does, he wretches and just can't settle. The nurse has ordered something for heartburn, but he cannot tolerate anything but water. We have an anti-nauseant, and are giving it intervenously every 4 hours, but that is not working well either. When he turns, it acts up....he doesn't even want us to move him to change his sheets.

Anyone have experience with this and found something helpful?

Lisa

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Reply by NatR

18 Apr 2012, 12:10 PM

Hi Lisa
I am so sorry your dad us having such a distressing time - none of you need that especially your dad.

I don't have the Answer for you - but my feeling is that he needs a different med to control that nausea. Comfort is number one to me - for anyone in your dads condition. He needs that retching controlled. Time for a different anti-nausea med I would think . I know you can get others, might need nurse to inject it. not sure!
Keep trying til you find what works

Hope someone else has the right answer- I just feel for you all - knowing how distressing this is for you all.

Please post when you find the solution
You are in my thoughts today
You are doing a good job for your dad
Best wishes, wish I had the answer for you
NatR

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Reply by Cath1

18 Apr 2012, 4:04 PM

Dear Lisa48:

Can you speak to the palliative doctor or nurse about this jarring new development of your Dad's? Perhaps they will be able to explain all the options and give you more insight into what it all means.

I don't want to alarm you, but in the days before my Mom passed away she could no longer swallow or tolerate anything by mouth, not even sips of water. We and her nurses made sure to give her the comfort of mouth care because her mouth and lips became very dry at this stage. We used a swab and gently cleaned her mouth and moistened her lips often. The nurses made her very comfortable and were extremely careful and gentle when repositioning her in bed. Even though the care my Mom received was painstakingly performed with only her comfort in mind, it was still very painful and frightening for me and my family to witness my Mom at this point in time. I and they felt that she may be suffering from thirst or discomfort that we felt helpless to do anything about. We were assured by the doctors and nurses that what was happening to my Mom was natural and that she was beginning to let go.

From my vantage point a week was not a lot of time to adjust to my Mom's inevitable parting, but I imagine from her perspective it was more than enough time for her to prepare. Some people sadly don't get any advance warning of death, which I imagine is the hardest situation to accept. I feel blessed that we all had that last week with my Mom even though it was the most heartbreaking experience ever in our lives, it also bestowed upon us the most meaningful memories.

Lisa, my Mom's situation is not the same as your Dad's as she became ill quite suddenly from dehydration and even with fluids by intravenous she was not able to recover. After a week in the hospital, with our family from both far and near beside her keeping vigil, we made the extremely difficult decision to discontinue her IV as fluids were not able to provide her with the outcome for which we had all wished. It became clear that her wish was to die well and without further interference as any measures to prolong her life had no possibility of respecting the quality of her life.

As soon as the IV was removed, my Mom's body totally relaxed and she was given medication to ensure she had no pain. Her facial expression was peaceful as she slept comfortably in her last hours. I didn't sleep at all that night, as I held her hand gently and just watched her under the light of the moon as I marvelled at the peace that had come over us both.

I didn't know then it was to be her last night on earth with me as no one gave us any indication that the end was so near, although it was explained to us all that it was imminent. Even in the last two hours before my Mom died her doctor said that her death could take days or even weeks from then to occur and he said even with certain physical signs it is very difficult to predict. She passed away that same morning just after 9 am. and I will never forget how she miraculously awoke to hold captive the gaze of my eyes one last time. Love needs no words.

She had been struggling all that week and my brothers had to travel from afar to get there to spend time with her. It was an agony for her I'm certain but also an agony for us watching her trying to hang on for our sakes. Once both of my brothers were in the room with her and with me - her three children together for the first time in a very long time - she was lucid and highly aware and then happily resigned and ready to leave. Below is an excerpt from a tribute I am writing for my Mom:

Lionized by the sight of us, she graced us with the memory of her most exquisite smile and collectively we felt for a sublimely ripe moment the extraordinary height of her heart’s elevation as she bequeathed to us each the thrill of an uncommon celebration of which nothing else in the future will surpass. I know she was conscious and thoroughly present as she grasped the significance of our last standing tribute to her. Her love for us as our sweet mother, our one-and-only, gave her the inspiration she needed to hold on tenaciously through unbearable pain and her new-found longing to leave. For her radiant and everlasting devotion and phenomenally true grit we are filled with endless gratitude and pride for having been born and raised by the woman the world in its wisdom and wonder chose to mother us all.

Whatever is happening to your Dad in his personal situation, please know I am thinking of you and hoping you will get the answers you need to make him as comfortable as is possible. My biggest wish for you all is to feel peace amidst the pain when the end is near. Hugs from my heart to yours, Lisa! Xo

VHcath

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