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lukasahero Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Dec-29-09 07:30 PM
Original message
New to this group - Dad's cancer is end-stage
Reading through posts on this forum, I feel like we should all be in here all the time giving you all encouragement and support. I'm ashamed I have never looked in to see what DU folks are dealing with. Not, at least, until it affected me personally.

My Dad was put into hospice care today. He has merkel cell carcinoma and it has advanced to his lymph nodes and bones despite surgery and radiation over a year ago. I'm sorry to say there is no hope for recovery.

I guess I was wondering if anyone here was dealing with a family member in hospice care who would be willing to talk about it with me... I'm struggling with it right now and hoping it gets easier...

Dad is in good spirits and seems to understand what's happening. I wish I could say the same.
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shrike Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Dec-29-09 11:30 PM
Response to Original message
1. My aunt has been a hospice nurse for 30 years
Your father is in good hands if his caregivers are anything like the group she works with.
Is there any information in particular that you need, or would like to talk about?
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lukasahero Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Dec-30-09 10:12 AM
Response to Reply #1
2. Thanks
I have a friend who was a hospice nurse for many years as well - it takes a very special person to do the kind of work they do.

I'm not sure I have any questions so much as just wanted to find some folks who know the drill. I'm frustrated because I live an hour away (my sister and her family live 5 minutes away) so I can't be as involved as I want to be. I'm planning to visit on weekends but I have to admit, it's hard to see my dad laid up in bed looking so frail and weak. I don't know how my mom is doing it (not to mention she broke her wrist a week before Christmas...)

I don't really expect people to have much to say about this (what is there to say, really?) I think maybe I'm just looking for a place to write....

Thanks for responding. And God bless your aunt (no offense intended).
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shrike Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Dec-30-09 04:11 PM
Response to Reply #2
3. My aunt's a devout Catholic, so invoking God's blessing surely won't offend her
Is your dad at home, or at a hospice care center? I've known people who did it both ways, and the policy seems to basically to allow family members to come and go at will. My aunt and her colleagues focus on keeping the patient as comfortable as possible, so your dad won't be in any pain.

A friend of my husband's recently died in hospice, so I'll relate that experience: she was 76 years old, had been widowed young, led a full life raising children, pursuing her hobbies, seeing friends. But her kidneys failed, the dialysis treatment basically allowed her no life, she felt terrible all the time, and even though there was a chance that a donated kidney might become available she decided to let nature take its course. Her children were VERY upset. But she explained that it was her decision, and hospice was set up for her in the home she loved so well.

Dying was a three-week process (remember, everyone is different. I can't give you a timeline for your dad.) Since she was no longer on dialysis her body behaved as a body naturally does after its kidneys shut down. It comes to the point where life can no longer continue, and the rest of the body's systems shut down. She was quite lucid for a long time, though, and hospice ensured she didn't suffer. Different people stayed with her, but an unmarried niece took time off from work to move in there and be with her at the end. She was able to see "the people she loved," as she put it, one last time, and one of them was my husband. She called and asked him to come. She was much older than he, but they were very good friends. Because of hospice care, her dying became a long process of going to sleep, and finally not waking up.

My sister was a critical care nurse for years, and she says that the dying are very aware of what's going on. She says people shouldn't start rattling on about things while they're in a dying patient's room; the person can hear them, and it'll kill them to think that the last time the loved one heard their voice they were bitching about something.

A final thought: people who've been in your shoes have told me that their loved one sort of had a resurgence, a day or two before their death. They became stronger, more animated, lucid; think of the sun as it sets, the moment just before it dips below the horizon. My stepson recently lost his wife, and the day before she died she was practically her old self again. It's like the body gathers itself up, one last time.

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lukasahero Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Dec-30-09 06:37 PM
Response to Reply #3
4. Must run in the field
My friend who did hospice work was a devout Christian (of the kindest sort). Thanks for sharing and thanks for talking to me. It means quite a lot to me.

My dad is at home and my mom is there with him. Part of what we're dealing with is shock - we only learned that the cancer was back and in his lymph nodes a week before Christmas (2 weeks ago now?) and then that it had riddled his hip bones on the 23rd. In the week since, he has entered hospice care. At Thanksgiving, he was up and around eating well, and seemingly the most improved we've seen him since the surgery and chemo a little over a year ago. It's been just over a month since then and now he's in hospice... The speed of this has been shocking.

And the speed of it is preparing me for the possibility that this will not linger on and on. I would like to believe he will be with us for another 5 years but the reality is he will not. I'm not sure that reality has hit my mother yet as she was arguing with me tonight as to whether or not I should come down to visit this weekend. (They are only an hour away - I've commuted to work that far for 7 years!) I don't think she realizes I'm afraid I won't have too many more opportunities to visit with him if I can only get there on weekends.

Reading up on hospice, they do recommend as the situation advances, that the patient not be left alone as that is one of the greatest fears expressed: dying alone. While there will be hospice as well as my mom and my sister's family nearby, I also have time available to me through my employer so when the time comes, I will take time off to be with him.

"Because of hospice care, her dying became a long process of going to sleep, and finally not waking up." Thank you for this line. It's hard to read but oddly comforting. Part of what has been eating at me was, before they put him on the morphine, it was obvious that my dad was scared. That's not an easy thing to know.

Thanks again for talking to me.
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shrike Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-19-10 11:35 AM
Response to Original message
5. How are you all doing?
I got sick around New Year's, so haven't had a chance to check in.
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lukasahero Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jan-20-10 12:27 PM
Response to Reply #5
6. Hi - thanks for remembering me
How are you doing now? Was this cancer related or just a run of the mill mid-winter bug?

We're holding up. Mom's exhausted but the hospice folks are wonderful and my sister is local so she's there all the time helping out. I get down there on the weekends to visit with dad and give mom a break. I wish I could be there more.

My dad is failing fast. It's terrible to watch this disease eat away at his body while his mind is still so sharp. He knows what's happening and said to my husband last week "how do you keep your spirits up when you're dying?" It's soul-crushing.

How are you holding up?
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shrike Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jan-20-10 02:47 PM
Response to Reply #6
7. My situation was complicated
I had surgery for breast cancer in early December. Although the prognosis is good (no lymph node involvement) I was feeling bad for a long time. I just chalked it up to the surgery, even though I was having really weird symptoms. On Jan. 7, I spiked a fever and called my plastic surgeon (he's handling my breast reconstruction.) He called in an antibiotic and told me to call him back if I had any other problems. On Jan. 9 I woke up with an inflamed area around my incision. He admitted me immediately and put me on an aggressive course of antibiotics. He also said, "I'm putting you on liquid nutrition." Turns out, my potassium levels were dangerously low. (Google potassium deficiency.) It's probably a fluke thing related to surgery. Thing is, I didn't have a primary care doc at that point (fired mine for incompetence), my breast surgeon didn't seem all that concerned about my symptoms, and when I went to the ER the first time (I got scared) the doc blew me off. So it took a plastic surgeon to save my life, albeit he'd initiallu admitted me for a different reason. But it was nice to have someone take my problems; all he said was, "you're not a complainer, and when someone like you calls me twice I know there's a problem." A plastic surgeon -- well, Cancer challenges a lot of your assumptions, if nothing else.

Anyway, I'm feeling good now; sorry if that was TMI. It's good you're giving your mom a break. Unfortunately, there's really no good way to die. Hospice will do the best it can. Please don't feel bad if you don't always act like you thought you'd act. I remember sitting in my dad's room on the last day of his life, and my sister turned to me and blurted, "why can't this be over?" I felt the same way.

Also, don't feel bad if you're not there when he takes his last breath. I remember we went home to get some rest and got a call from the nursing home; he'd passed. The nurse explained that this was not all that uncommon; when it comes to the act of dying, some people just want to be alone.

Please remember, you are all doing the best you can. Your dad knows it. He appreciates it, even when he can't tell you.
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lukasahero Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jan-21-10 04:39 PM
Response to Reply #7
8. Good grief
What a disaster! I'm glad you're feeling better but that's really terrible. I've been blown off a time or two in my life (albeit over nothing that serious) and it's just awful - you feel bad enough never mind having the doctor ignore you. Well, I'm glad you're doing better now all the way around.

And thanks for your words of encouragement. Wanna talk to my husband? He wants me to talk to my doctor about being depressed. I'm pretty sure she's going to say your father's dying, you're going to cry about that some. (I know my husband is just trying to help and I do have a history of depression but for goodness sake, enough already!)

I'll be ok, I just wish I could do more. And it seems kind of ghoulish to me to be visiting him now - he's probably thinking oh sure, NOW you come to see me. I wish I knew what to do or talk about...

Well, thanks again for talking to me. I am glad you're feeling better. Stay well.
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shrike Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jan-21-10 06:01 PM
Response to Reply #8
9. Don't worry about talking to him
I know, it is tough to find something to talk about. Can you find other things to do for him instead? The last time I saw my dad before he went down hill for good I watched old movies with him and brought him his favorite foods. He wasn't supposed to have them, but I thought, what the f*** difference does it make, he's dying. A lady I know fixed a pot of coffee for her mom on the last day of her life; she loved coffee, and had been denied it for months, so her daughter fixed a pot and was able to feed her a cup early in the day; she died that evening. Maybe experience things with him; how's the weather where you are? Can you get him to a window?

Don't worry about being ghoulish. Just sit with him; you'll be glad you did it.

The guilt you're feeling -- re, 'now you come to see me' is natural; I felt the same way about my dad, only it was later on. I thought, "oh, did I do enough for him? Was I a good enough daughter?" That's normal, the way the brain works.

Oh, and your husband is trying to "fix" the situation; that's what guys do. Are there women you could go to (other than your mom), spend time with?

Hang in there.
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lukasahero Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Jan-22-10 05:01 PM
Response to Reply #9
10. You're a very nice person
I gave you an out in my last response and you didn't even take it. I told my husband I cried when I saw how quickly you wrote back to me. I can't tell you honestly how much it means to me.

I know what my husband is doing (I would be doing the same thing 'cuz I'm a little bit like a guy in that respect) but it was funny to read you say it.

I haven't really told any of my friends about this yet. I told one, she's a nurse so in a way it's good and in another way it's not. She's kind of clinical about it. My whole family is a little 'closed' emotionally. (We're of English descent, if you get that inference...) It's not that we don't feel, it's that we don't share the tough stuff too well. And I'm the most stoic of the family (I take after my dad, not my mom - which presents it's own issues to deal with as I'm losing the only ally in the family I ever had...)

(Good grief, that whole bit wasn't supposed to come out... This is all quite complicated.)

I have to give my mom credit about the food - she's really trying to 'spice' things up a bit. My dad loves food - always has - used to start planning lunch during breakfast! My mom, not so much. But she's trying to give him all the stuff he used to love. It's kind of heartbreaking because I think we all know what she's doing and it's sweet and sad at the same time. I'm going down to RI tomorrow and I'll make him some scallops (I'm the only one besides him who eats them so I'm the only one who knows how to cook them...) Yesterday he decided he wanted a frappe (RI for an ice cream milk shake) so mom made him one last night. She's trying so hard to give him a taste of everything he loved in life (and I just had another breakdown just writing that...)

In case I didn't mention, my dad was the best dad in the world - he always had time for us, and he never expected me to be anything other than who I was. He encouraged me to pursue my dreams, his example of what a good man is is the reason I was able to leave my abusive first husband. He used to write me 'letters' offering guidance and support through life's transitions and he is and will always be my hero.

So the weather isn't really working in our favor - but I'm making him a slide show of my garden. I'll make a dvd for us to watch together tomorrow. Memories of spring and flowers. It's so crushing he'll never see that again.

Anyway, Jan and I are going out for dinner tonight (that's my husband) so I should collect myself and feed the dog. I'll take your advice about hooking up with some of my girlfriends. I'm good friends with my neighbor (we have puppy play dates every night after work) and he's been a good listener too but I think dinner and drinks with my friend Melissa might be in order... In the meantime, thanks so much for listening. This has helped in ways I couldn't have imagined. You are good person. Thank you.

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shrike Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Jan-22-10 11:04 PM
Response to Reply #10
11. I don't mind answering you
And you don't have to give me an "out." And don't worry about answering me; It's just that the older I get -- plus, I now have cancer to deal with -- I am more and more aware of how much we all suffer. So you see, it's not so much that I'm a "good" person, it's that I've seen too much and been around too damn long. Ah well . . .

I'll tell you something that I told someone else on DU: when someone loves you, their love never leaves. You'll take it with you wherever you go, and it keeps you strong, through all the broken times.

Sounds like you and your mom are doing all the right things, btw. You'll be okay; we all will.

Godspeed,

Shrike
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lukasahero Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Feb-28-10 07:30 PM
Response to Original message
12. RIP dad
My final update to this post:

My dad passed away quietly early Saturday morning. My mom and I were with him.

He was my hero and the most significant relationship of my life. He will be unspeakably missed.

Thank you shrike for the support you gave me through this difficult time. It was truly appreciated.

:cry:
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shrike Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Mar-02-10 03:45 PM
Response to Reply #12
13. I'm sorry

I was glad to be there for you.

Here is something I keep in my desk, and computer; it is a great end-of-life quote, as well as a statement for anyone at any stage of life.

This is what you shall do: Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

Walt Whitman, Leaves of Grass

Peace, Shrike
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