The way forward?
October 15, 2010 2:46 PM   Subscribe

Dad with metastaic cancer stage four, pain-free for now. The way forward?

Long story, sorry.
He's 87 now. Dodged a cannonball with an early diagnosis of colorectal ca, but didn't stay with medication regimes, lowering his blood sugar to allow for usable PET scans, etc. Brothers and I intervened twice a couple years ago to get his blood sugar under control and back on meds as necessary, no avail.
He alternates between acceptance and denial/negotiating. Treatments to lengthen the time he has left will require a caregiver, and oddly enough, my unemployed status makes me a most likely candidate. However - the old man still carries every bit of baggage he's found, and it isn't likely he will let go and enjoy what time remains.
I've had a difficult past with my dad but let go of that a long time ago. Because he may not have let go himself, my caring for him feels like a bit of a crapshoot.
Leading to my question: what is your experience either as a caregiver near end of life, or as a visitor to parent at a care facility, or home hospice with an aide?
My gut says 'caregiver' but my brain says ' home hospice'.
posted by nj_subgenius to Health & Fitness (18 answers total)
Why does home hospice preclude you from being a caregiver? Maybe there are some financial constraints, sure, but as far as I know there's nothing that says you can't have a home hospice worker AND be at your dad's side all the time. In fact, he might actually prefer it that way, because then you shouldn't be put into potentially embarrassing situations like wiping his bum.

I'm not saying that because "oh no gross only personal care workers should do that," but because he may be the kind of person who would prefer to keep that layer of dignity between himself and the child whose own bum he likely wiped. But on the flip side, you wiping his bum [okay, I am not obsessed with scat] could also be considered a very loving and moving role reversal by some people.

Hospice is a spectrum, and I encourage you to sit down with your local agency and see what they can offer. And given the care that you yourself will need, and the time and energy to process this situation, having someone else shoulder the load for even part of the time will be a huge relief.

I'm sorry that you're in this situation, but it comes for all of us and it sounds like you've said the things that need to be said. I wish you the best as you move forward, whatever way you choose.
posted by Madamina at 2:55 PM on October 15, 2010 [5 favorites]

My mom died in a residential hospice (also of cancer). It was a wonderful place, and I would recommend it to anyone. I didn't have to worry about her; I knew that any of her needs would be taken care of immediately. Unless there is an additional family member besides you who can provide support, I wouldn't try to be a full time caretaker.

Please memail me if you want to talk. I am sorry you have to go through this.
posted by miss tea at 2:57 PM on October 15, 2010

I'm so sorry you and your family are going through this.

Speaking from my own experience: my parents both died of colon cancer -- my mother in hospice, my dad in a care facility. Her death was about as "good" as one could have under the circumstances (pain-free, surrounded by her own things and people who loved her, feeling like she was in control of what was going on). His death was pretty much a horrorshow.

My mother and I were very close, my dad and I -- not so much. Regardless, I couldn't have been a primary caregiver for either of them; there was just too much emotional weight in the situation for me to be clear-headed and competent, and if I'd let guilt push me into that role, I know I would have really buggered things up (as well as been wretched). So hospice was a godsend, and I really, really wish my dad had been willing to avail himself of it.

All of which being said, everyone's family is different. Best wishes to you in getting through this hard time.
posted by Kat Allison at 2:58 PM on October 15, 2010

[Also, a clarification: really, DON'T be at your dad's side all of the time, whatever you do. You need to be separate just as much as you need to be together, so you both can take time to be yourselves.]
posted by Madamina at 2:58 PM on October 15, 2010

Hi Madamina,
I figure home hospice would not preclude my being a primary caregiver, apparently I didn't state it very well. By myself - especially with medication side-efects if he chooses them - I don't think I would be much help. My brothers and I are very close to each other, and none of us feels that care ought to be one family members' concern. Just indicating that it may be well do do some of the heavy lifting. (all of this in the form of a question, sort of)
posted by nj_subgenius at 3:01 PM on October 15, 2010

First of all, I'm very sorry - this is not an easy situation to be in.

When my dad was dying of cancer, he was pretty much in denial almost to the end. He did insist, though, that he wanted to be at home. We had to talk him into home hospice care, using the argument that it would give my mom a break. He was more worried about her than himself, so he gave in. It was the best decision any of us made. The hospice nurse was remarkable and answered our questions very directly. My brother lives across the country and we asked her when we should have him come home. Her answer to the amount of time my dad had left was direct and also almost spot on in terms of what time he did have left.

After my dad passed, she was there right away to help make calls and arrangements. She was also extraordinarily helpful in calming my mom who was an absolute mess. I highly recommend that you at least look into it. The hospice nurse visited every day. If my mom wanted to go out (which she never did), the nurse would've stayed with my dad. They do a lot or a little depending on your need. Good luck with whatever you decide and take care.
posted by fresh-rn at 3:02 PM on October 15, 2010

Do you have any idea what he might want to do? I mean, I assume you're including him in this decision-making process?

I'd suggest home hospice, maybe with an aide to assist during off-hours.
posted by elizardbits at 3:10 PM on October 15, 2010

Luckily two family members are experienced with home hospice, both RNs ( sorry I should have had that in the OP.)
IME as pain emerges, the likelihood of being heavily drugged increases. Seems to me that a home hospice environment is better than other options. BUT. chemo to increase his remaining time, or palliative care to make what remains as helpful to him as possible in coming to terms?
posted by nj_subgenius at 3:11 PM on October 15, 2010

From recent experience I have to say that, if there is such a thing as an "ideal" way to deal with this part of life, home hospice with you as caregiver is pretty close. These people are really good at dealing with the difficulties and problems that come up. In our recent case, they were available 24/7 (really) and were supportive even to the extent of waiting for the funeral home to come. They have experience, compassion, and the ability to understand what you are dealing with. At the same time, your father (although he may not express it to you) will appreciate being in familiar surroundings with the comfort of the right level of medication. These, together, can make this last part of life less difficult.

Lastly, do not be afraid to rely on hospice when you need to get away for a few hours. They are good at taking care of the care-giver as well as the patient.

Best wishes during this trying time.
posted by Old Geezer at 3:12 PM on October 15, 2010

Sorry, not a fairly worded question.
Chemo could increase his remaining time, and my instict is for that. However, palliative care, to make what remains as helpful to him as possible, seems more humane but defeatist. Maybe I am denying too.
posted by nj_subgenius at 3:15 PM on October 15, 2010

Chemo vs. palliative care is very personal, but IMHO chemo is not desirable at this point. This will extend life, but not increase quality of life. Ask hospice for some guidance regarding this issue. Again, they've got a lot of experience here.
posted by Old Geezer at 3:16 PM on October 15, 2010

Chemo can sometimes be considered palliative, as it can prevent additional spreading of tumors. My dad has stage IV colon cancer, and has been undergoing a very light regimen of chemo for nearly 2 years now. When he was initially diagnosed, he was told he had 4 weeks to live.

I'm not trying to give you false hope here - not all cases are alike, of course. When we initially brought my dad home from the hospital, he had home hospice care as well as round-the-clock home health care aides. The hospice care people are fantastic. They truly understand end-of-life issues and can help you to not only prepare but to figure out what exactly it is that you need to keep your father comfortable and yourself sane.
posted by bedhead at 3:33 PM on October 15, 2010

Sorry about this. Sounds like it sucks.

My grandfather died of brain cancer about five years ago, and coincidentally my girlfriend's dad is dying of almost exactly the same thing as we speak. Seeing how the two of those situations worked/are working out, I think the most important thing is that whatever the plan is, the patient must be on board. Getting someone to do something they don't want to do is a miserable experience.

My grandfather got his diagnosis in his late 70s and basically opted for palliative care from day one. Surrendered his driver's license, moved he and grandma to a nursing home where he could get the care he needed and she would be able to stay once he was gone, wrapped up the finances, the works. No chemo, no surgery, no radiation, just pain management and logistical support. He moved with his wife to the senior community home and after a few months he was transferred to their hospital. Seamless transition, and they were all settled in their new place before he started to really go down hill. He died just over a year after the diagnosis was made, but his passing was pretty peaceful and the process of getting there was about as easy as it could have been.

My girlfriend's father got his diagnosis in his late 60s and is going for the whole hog. Doctors in three states, chemo, radiation, therapy, you name it, they're trying it. No one really thinks that he gets the fact that this disease is going to kill him, and even if his wife knows that intellectually, she doesn't seem willing to think about it. So no plans are being made, every new development in his disease is an immediate crisis, and his wife is about down to her last nerve. Part of this is because he hasn't really been completely right due to a pretty nasty knock about the head he got about two decades ago, but whatever the reason, his unwillingness/inability to really deal with his own disease is running her and everyone else completely ragged.

That may not be precisely on point, but I think what I'm trying to say is to see if you can figure out, with your dad, what he wants and just go with it.
posted by valkyryn at 3:50 PM on October 15, 2010

Thank you all.
I'm visiting next week. A couple of my brothers and I will be there to visit him. One, who is local, has been keeping us informed. At that point we'll be able (I hope) to help him come to terms. He's a very religious Catholic, so we'll be looking for him to receive Communion daily, and perhaps some guidance. Home hospice + caregiver wins. So, we'll see.
posted by nj_subgenius at 4:16 PM on October 15, 2010

Reach out to the Cancer Society in your area, they were helpful and generous with support when my step dad died of kidney cancer. They helped a little with gas money, hotel, etc...

Get a professional if you can. you can be there to help (even do 100% of it) but the helper is there to take the load off of you if needed.

Caregivers need a break, even to take a shower.

Good luck.
posted by bottlebrushtree at 4:28 PM on October 15, 2010

OP, if you want him to receive Communion daily, that shouldn't be a problem - my dad's church sent lay ministers and deacons (and sometimes the priest or one of the retired priests that live in the rectory) every day to bring him communion when he was homebound. Most Catholic Churches have active ministries for this purpose. Please do reach out to his parish and ask.

Please feel free to MeMail me if you want to ask about hospice, or any of it. It's incredibly difficult to deal with emotionally, but there are lots of support avenues available to you, so please take advantage of them.
posted by bedhead at 10:01 PM on October 15, 2010

My father died of colon cancer about 10 years ago (Yikes, it will be ten years tomorrow!). My relationship with him was similar to yours: a bit of baggage. I wanted to experience his death differently than I did with my mother (I was in my early 20s and I distanced myself a bit from it as it was coming near).

When my father was sick I was living on the other side of the country so my time with him was in discrete periods of time. I came back home for 10 days and spent every day in the hospital with him. Leaving every evening, it felt like a weight was lifting off of my shoulders. So I would suggest that, whatever you do and whatever responsibilities you take on, you give yourself some time away to do the things you normally would do in your life. Caring for a loved one can be intense and focused. Just don't lose yourself in the process. I think it will make it a better experience for you both now and as you look back on it.
posted by Taken Outtacontext at 6:16 AM on October 16, 2010

I noticed the thread was still open, so here goes:
My dad went with home hospice. My brothers and I (five total) cared for him with the assistance of a home health care aide, Greg, who was a Godsend. The old man was angry at so many things in the three weeks after his diagnosis, which was rough. A Eucharistic minister came every day to issue him communion, and frequent visits by clergy helped him immeasurably. I was not there when he died. My older brother called me when he passed. I was a few minutes away and bade him goodbye. Thank you all for your kind thoughts. He lived a life that I hope he enjoyed.
posted by nj_subgenius at 8:30 AM on January 13, 2011

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