There must be something I can do to help
October 13, 2013 6:22 PM   Subscribe

Is there anything I can possibly do or say to ease my Dad's emotional suffering caused by his terminal prognosis?

My Dad has stage four cancer. He is now spending most of the day in an armchair or bed, too tired to read, too tired to talk much, though he is sometimes strong enough to watch a movie with the rest of the family, mostly for our sake. He is not in physical pain but just doesn't have the energy to enjoy anything he used to enjoy. Part of it is the cancer but Mom and I think a huge part of it is the crushing sadness and fear. He talks a lot how he'd like for it to be over already, and how he feels useless and broken, and how he feels the cancer growing. When he says this, I usually hug him and tell him I love him... and it feels so empty, and unhelpful. I visit with him every day, and he always asks if I'm going to be there tomorrow, so I hope these visits do bring him some comfort but I wish there was something, anything, I could do to make it less horrible for him. He insists he's not depressed and doesn't believe antidepressants could help him. On the other hand, a few times something happened to cheer him up and he was like a different person - with lots more energy, speaking in a strong voice, smiling and even joking - for a few hours to a day.
Hospice is coming on Monday and I have already made plans to see a psychologist by myself to ask for advice. Not sure how helpful that will be though.
I know what he needs is hope - but what exactly can a person hope for when their body is failing them, and it's only going to get worse?
If anyone can offer any advice, especially if you have been there, I'd be very, very grateful.
posted by anonymous to Human Relations (24 answers total) 5 users marked this as a favorite
I visit with him every day, and he always asks if I'm going to be there tomorrow...

This. This is what you can do. He clearly loves seeing you, and knowing you'll be there every day is a source of comfort for him. Keep doing that.
posted by xingcat at 6:30 PM on October 13, 2013 [26 favorites]

You are already doing something wonderful, so continue! What your father most benefits from is close proximity to loving, warm bodies. As harsh as it is to say, your father will ultimately process how he needs to inwardly--others can't go through it for him.

Best wishes and hopes for happy days.
posted by planetesimal at 6:33 PM on October 13, 2013

How long since he got his diagnosis, and how much longer does he have?

I'm sorry to hear about your dad. My father had a stroke in February, and although it's a different situation I feel like much of your comment resonates with things my family is dealing with.

Dad has mostly recovered with only some loss in his field of vision and trouble with his balance. But for the first 6 months he hardly ever left the couch. He sat there constantly over-analyzing all his decisions in the past. He'd literally spend all day muttering to himself "Ohh Steve". Low energy. Sleeping all the time. Unable to talk about anything positive and only dwelled on what he'd lost.

We managed to talk him into antidepressants for a couple months but it didn't seem to help. We tricked him into going to the stroke support group and he's actually come to like those meetings.

He's always been a depressive person to be around with an extremely pessemistic point of view. Our only hope is that with time he'll improve. Unfortunately that might not be something you have.

One thing that has helped greatly is mom going to her own support group. That, and her realizing that it's OK to be mad at my father when he's being stubborn (won't take his meds, won't go to doctor visits, won't leave the house).

Don't neglect your own mental health as you deal with this. I think that for people like our fathers there is no telling them. They have to figure it out on their own, and they don't care/realize how hard that is on everyone else.
posted by sbutler at 6:39 PM on October 13, 2013

My aunt has just begun hospice, and my cousin asked all the extended family to send family news to her - not condolences or goodbyes, but everyday news, pictures of kids, chitchat. Maybe something similar would interest your father.

I know what he needs is hope - but what exactly can a person hope for when their body is failing them, and it's only going to get worse?

Assurance that they've done a good job, that they've completed their work, that their legacy is one to be proud of, that they will be remembered with love.
posted by headnsouth at 6:49 PM on October 13, 2013 [35 favorites]

My advice a few years ago on the subject echoes headnsouth's.
posted by MrMoonPie at 6:54 PM on October 13, 2013 [4 favorites]

Are there things that your dad always wanted to do but put off because it wasn't the right time or he was afraid? Even if his time may be cut short, he may feel better about the time he still has if he really lives it out loud.

You sound like a great daughter/son, I'm sorry this is happening to you and your family.
posted by onlyconnect at 6:54 PM on October 13, 2013 [1 favorite]

Assurance that they've done a good job, that they've completed their work, that their legacy is one to be proud of, that they will be remembered with love.

This, this, a thousand times this.

Let him know how much you love him. Let him know the good ways in which he shaped your life. For example, did you get your sense of humor or love of animals or interest in music from him? Did he teach you things that you've passed on (or expect to pass on) to your own children? Are there good times you always look back on, stories you always tell? Let him know.

I think, in the final analysis, we want to know that we connected with people in a good way and that our time on earth mattered somehow. Let him know that he did.

My best to you and your family.
posted by scody at 7:05 PM on October 13, 2013 [7 favorites]

Is he in pain? Looking back, I feel quite strongly that my father did not get enough pain relief due to family issues and his belief in stoic suffering in his last stages and that was such a mistake. Hospice and his doctor should help figure out medication that can help. Being in chronic pain is an enormous energy drain.

This is the biggest challenge in life and your father is very sad because so much will be lost. Ask him if there are people he'd like to write to - if he's unable to, he could dictate the letters and you could write them for him. Videoing family memories and advice for you and the rest of the family could help.

My dad felt better writing his funeral wishes down, a painful conversation, but it helped him. I know some people want to write their obituary themselves.

Honestly, just being there, and saying that you love him and will miss him - that's the most important thing.
posted by viggorlijah at 7:10 PM on October 13, 2013 [3 favorites]

Also, thinking of my partner's dad's final days last year: comforting physical touch can be so important, too. It might be as simple as holding his hand or gently stroking his arm. He might also get some comfort from therapeutic massage of his neck or joints. Maybe ask the hospice nurses if they have any thoughts/recommendations on this score.
posted by scody at 7:32 PM on October 13, 2013 [2 favorites]

This sounds very familiar. My father passed away earlier this year, and whilst it was unexpected, he also had three months where he definitely wasn't well, and that he knew "the clock was ticking" - and he (and we) thought he had a lot longer than three months.

Everything you say about your father's behaviour resonates very strongly with me, because my father behaved very similarly. He was clearly depressed. He wouldn't take anti-depressants but did see a counsellor; it didn't seem to help much and I suspect it was just part of his personality and make-up that he would deal with the limitations and mortality... well, poorly to be honest.

There are four of us kids, plus his partner. And we all tried various things. Nothing was successful in the sense that he was "cured" - it was more like sunshine breaking through clouds for periods of time. Things that helped with that was spending time with his grandchildren - their innocent pleasure in spending time with him helped I think. Also, and this sounds weird, but planning for the future, even the very short term appeared to help. For him, it was planning for a wedding to his partner of 20+ years. They never got the wedding, sad to say, but I think it was having something to look forward to.

It's great that you're able to see so much of him - for you, not just for him. Though we spoke frequently, I never saw my Dad in the last three months of his life (because we didn't know it would be the last three months). I was booked to fly up the weekend after he died.

I have no soliloquy, or impassioned speech I wished to share with him - nor him, me. We knew what we meant to each other.

But I really wish been able to hug him, feel his raspy stubbled cheek against my skin, his broomstick arms, hard and thin, around me, one more time, a hundred more times, a thousand more times. I should have asked all the question, life questions, advice questions, handyman questions, parent questions, travel questions. Those questions pour into me now like waterfalls and then dribble out at my feet, unanswered. If you want your Dad's take on things, get it now.

I think about that three months every time I'm in my garden, that he never got to see (he loved gardening), whenever I read a great science book, or see a great documentary. And especially when I catch myself enacting rituals, moments, emotions with my own daughter, that he must have had with me. He hardly got to see me being a father and I wanted so much to see his pride in me as a parent.

So, you know, you don't have to say stuff. But taking lots of opportunities to do stuff, be stuff, feel stuff with him is great. It's a thirst you will never slake. My condolences, OP.
posted by smoke at 7:37 PM on October 13, 2013 [20 favorites]

It sounds like you're already doing great. Keep visiting, be present, be with him. Let him know that you care. Hopelessness and grief are a totally natural response for a person who is dying. Although you can provide a loving presence, what he's going through is extremely emotionally difficult and you can't heal that part of it anymore than you can heal the cancer. Best wishes to you and your family.
posted by horizons at 8:27 PM on October 13, 2013

Just to respond directly to something you said in your question:
I know what he needs is hope - but what exactly can a person hope for when their body is failing them, and it's only going to get worse?

I'd like to gently suggest that what he needs might not be hope, but acceptance. False hope is crueler than no hope. If our time here is limited, there are relationships we need to resolve, things we have to say to and hear from the people in our lives, gifts we need to give, places we need to go before time's up. And if our time is limited, we have to accept that all those things might not happen, which is frustrating and sad.

Other people in this thread have already offered a range of great suggestions about how you can be with your dad. I think talking about special times you have shared or your favorite memories of things you've done together and encouraging him to talk about things he might not have brought up before now are lovely ways to ease his mind about some of the fears he may have about dying. Knowing you are there for him and that you will remember him with love for a job well done as a parent might be what he needs to hear. He might also just need to watch goofy movies, talk about sports or whatever he did and paid attention to before his diagnosis to help keep him in balance and normalize what time he does have left.

Easing the way during a transition is maybe the deepest honor we can give to one another as human beings - there are a small number of people in my life who I trust enough to want by my side if I am dying, and I hope they feel the same way about me. It is an awesome responsibility. Your dad had the privilege to bring you into the world, and it is yours to be present for him as he leaves it. Having been in your position, I feel for you during what is surely a bittersweet time for you both.
posted by deliciae at 10:45 PM on October 13, 2013 [2 favorites]

From the OP:
Thank you very much for the helpful hints and the support.
To answer some questions
- Dad got his first cancer diagnosis in 2011
- stage four was diagnosed last February
We went through a bittersweet phase from Feb to July when he was mostly OK physically, and we had lots of great conversations, lots of time with the grandkids, lots of hugs.
Now for the last two weeks it's mostly just hugs - his voice is weak, and we just sit side by side holding hands. Thing is, there just isn't much he enjoys any more, and is strong enough for. He says "he feels too sick to live but too strong yet to die". Conversations tire him out. Grandkid visits tire him out, as in he just sits there looking at them until he has to lie down (even though he still wants to see them as much as possible). He has a decent appetite (partly, I'm sure, because of the steroids he's on). He perks up sometimes when I share a funny story about one of the kids (I am their aunt). He watches a lot of nature films on TV. As for his life expectation, I'd say weeks rather than months?

So, I guess what I mostly struggle with is, how do I respond to: "You know, I would like to just die already"? He says this at least twice every time I see him. I have this nagging feeling there is something he wants/needs to hear from me. I just have no idea what that thing is.
posted by taz (staff) at 11:46 PM on October 13, 2013

I know what he needs is hope

Echoing others who have suggested this may not be the case. Perhaps what he's struggling towards is peace and acceptance.

I guess what I mostly struggle with is, how do I respond to: "You know, I would like to just die already"?

Again, I'd go with acceptance. "I can understand that, this all seems really hard. We're all glad for whatever time we have left with you. I'm glad I get to visit with you today."

And you know, dying is depressing for a lot of people. (I mean, Jesus, if you can't be depressed about a terminal diagnosis, what can you be depressed about?) But for what it's worth, my dad died in March of terminal cancer and was on anti-depressants for the year before he died. "Antidepressant treatment can be effective in alleviating the desire for death due to major depression, even in terminally ill cancer patients" is one study; there are many others. Talk to his doctor, talk to hospice.
posted by DarlingBri at 1:40 AM on October 14, 2013

Not exactly the same place, but when my wife was stage 4, a surprise to us both, I made sure she knew I'd be there with her every step of the way, and that she would not need to worry about being alone. Maybe it's different with a dad, I don't know. Whatever you do, or have to do or must endure is short, for both of you, so if you can be present, more is better. Since my wife died, I have had a few occasions involving friends. In one case, I wrote to the dying dad and told him how much his daughter meant to me and how I'd be her friend always and would be around for his wife. ( I live far away, and I actually try to do it, visiting when local and writing when not. ) In another, I patched up a long standing issue between me and a man whose wife was dying and who was a friend of mine in high school. I think the one thing dying people are missing is the future. Giving them a glimpse of an improved one is probably a good gift. "Dad, this is what I'm going to do with the rest of my life. This is how you made it possible. This is what you gifted me as a daughter. ....."

When my first wife was dying, I asked her once if she wanted to read a book she had started a while back. Her answer was "Why?". This is the mindset you are confronting in short. ( On the other hand, she was a willful, powerful, intense, and as far as I could tell, fearless human. I think she lived as long as she did because Death was chickenshit and afraid to come get her. She finally checked out on her own terms and let him off the hook. Man, she was badass for a lovely, southern belle.)

There's also fear. Antidepressants take a while to work, but anti-anxiety meds might be good. Many are prompt in action.

Last... remember this is your final opportunity to find out those things you wonder about but haven't asked. "How did you choose your work?, "What do you really wish you had done?", "Hey remember that time when x and y happened? What really happened?" )

This dying business doesn't last forever. Hope for a crisis free, rapid end. Hospice helps with meds that kill the actual pain, and render the end a matter of fact, not consciousness, in my experience. I hope it goes well for you. Once it's over, you can put a period on the sentence and start figuring out the meaning. Many good things will emerge.

None of us get out of this easily. Gaze into the future, and ask yourself what the view from that bed looks like. It makes for substantial change in the way you see your world. Death cleanses the dust and meaningless stuff and briefly shows you reality. Later, we go back to seeing the disguise the world presents us... the pressures, the nonsense, the irritations, the missing needs, the busy schedules, the work pressures, the fights and contests, the acquisitions and projects. But behind it all, like the substrate of a blackboard, lurks the reality that it's all intermediate nonsense. Death awaits. I don't find it depressing as much as I find it sobering.

Big hug, Anonymous. Good for you for being there. Dad should be proud and happy about that.
posted by FauxScot at 5:14 AM on October 14, 2013 [15 favorites]

I'm so sorry to hear that you and your family are going through this. I could have written your OP almost word for word two months ago. If there is a good or helpful answer to the "I just want to die" comments I didn't ever find it.

I second what others have said about being there, even if you don't feel you are doing or saying anything helpful - I believe that my presence was a comfort to my dad and I'm sure it is for yours.

Other things that seemed to help a little:

If at all possible getting out of the house for a low key, low energy distraction - my dad liked boats and got enjoyment from half an hour sitting beside a nearby canal lock watching boats go through it.

Visiting the hospice and talking to the staff helped him feel reassured that his needs would be taken care of and that he wouldn't be in pain.

He told me that doing small things to look after my stepmother in the future (new tyres on the car etc) gave him a sense of going on into the future even though he knew he wouldn't be here himself.
posted by *becca* at 5:26 AM on October 14, 2013 [3 favorites]

Also my brother got engaged to his girlfriend. That specifically may not be applicable to your family but I know it was a comfort to my dad that he and I were stable and doing OK in our lives with supportive partners - if there are ways in which you can reassure him about your own future it might be helpful.
posted by *becca* at 5:30 AM on October 14, 2013

Some things you can say are, "I know, this is so hard isn't it? I know that when you die, you'll feel better and you won't worry about us any more and that you'll be with Grammy and Gramps and you'll see Bingo again. Will you scritch him behind the ears for me when you get there?"

I've had many friends die (I lived in San Francisco in the '80's) and it seemed like so many of them wanted to hear our versions of the afterlife. I believe that it helped people process their mixed emotions about leaving this world and what would await them in the next.

Ask him, "So what do you think the afterlife is like?" I'll bet that would be an interesting topic for him. Perhaps you can share with him what YOU believe the afterlife is like. That always cracked up my friends.

For what it's worth, I believe that our souls all pal around from one life to the next. So first we all finish the game, we eat some Doritos, drink some Dr. Pepper and compare notes. The we roll for our lives in the next game and go around again. (Heavily influenced by gaming.)

All Things Considered had a great series last week of different religious leaders discussing the Afterlife, I found it really interesting and comforting. Perhaps you can share it with him and talk about it.

It sounds like you're doing an AWESOME job of hanging in there. It's not easy but you'll always remember being there for your Dad and helping him make the transition from this life to the next.

I'm praying for you.
posted by Ruthless Bunny at 5:50 AM on October 14, 2013 [1 favorite]

"You know, I would like to just die already"? "I have this nagging feeling there is something he wants/needs to hear from me. I just have no idea what that thing is."

I believe you are onto something. He is most likely trying to communicate something that he wants some kind of answer or resolution to, he may be saying he is getting close to death and perhaps something is holding him back or giving him a lot of anxiety. It could be something along these lines:

-he may be wondering what is going to happen as he gets closer to death, what is the exact process
-perhaps he needs permission to die from you or other people
-is there anything that is undone? A family member or friend he hasn't seen yet?

In the first scenario, he may have unexpressed fears about the dying process, perhaps he needs someone on hospice to explain what will happen in more detail. In the second scenario, he may be worried about what will happen to the people around him after he dies, is everything going to be okay? Is your Mom going to be okay? In the last scenario, there may be some long lost friend or disenfranchised family member that he needs to see. This last one seems less likely given your other details, but you never know.

There are other possible things he may be asking in his question. You might try just asking him if there something he is worried about, or feels hasn't been taken care of, and see where it goes from there. I recommend a book called "Final Gifts" by Callahan and Kelley.
posted by nanook at 7:29 AM on October 14, 2013 [1 favorite]

Your presence is the biggest gift you can give someone. It's hard to be around someone when they are deeply depressed and dealing with their imminent death. A lot of people can't handle it and don't know how to just sit and be there with someone who's going through a really hard time. A lot of people don't show up after someone gets a terminal diagnosis.

If you're wondering if he needs/wants something from you as he's asking that, you could just ask him, "Is there anything that you want or need from me?"
posted by mermily at 7:40 AM on October 14, 2013 [1 favorite]

I am not saying this is the case but maybe he needs permission to stop fighting. My father fought lung cancer until the end hung on for weeks longer than maybe he should have in pain and pretending everything was going to be OK, and he did it all for my mother to put off hurting her.

He was laying in a hospital bed gasping for breath, we were all around him and my mother leaned over and softly said "It's OK to go Frank, it's OK to go." He closed his eyes and seemed to fall asleep and passed not 15 minutes later. It was strangely beautiful. Your Dad is not at that stage yet so letting him know he's loved, that he's fought a good fight and that it's OK to go onto whatever lies ahead when he is ready(depending on your beliefs).

If you think he has something he needs to say or wants to do, ask him, to be blunt you don't have time to muck around trying to read between the lines.
posted by wwax at 7:51 AM on October 14, 2013 [2 favorites]

Even if he's not in anything you'd call "pain", if he's been stuck in the same bed/chair for long periods not able to change his position easily, he may just be mildly uncomfortable, and resolving that could make a big difference to his outlook. I've personally seen something nearly diagnosed as "depression" in a terminal patient being resolved with the use of OTC painkillers.
posted by emilyw at 8:55 AM on October 14, 2013

if he is too tired to read, maybe he'd enjoy an audiobook? As long as you set it up that he can easily play/pause/rewind at the push of a button, it could be really relaxing and rewarding.
posted by 5_13_23_42_69_666 at 4:03 AM on October 15, 2013

I'm the OP.

To anyone reading this, my Dad died three days ago.
I am grateful for all your responses, and touched by your personal stories.
Thank you.
posted by SecondSock at 6:37 AM on December 1, 2013 [1 favorite]

« Older Cable television or like alternatives in Toronto?   |   Research on the decline of voter engagement and... Newer »
This thread is closed to new comments.