Help me live well while my father slowly dies...
June 30, 2013 4:55 PM   Subscribe

My father was given a terminal diagnosis almost a decade ago. I am so lucky that he is still here. But I'm exhausted from living with the specter of his imminent death all these years. And I feel like I've been missing out on living my own life. How do I find more space for myself, even as I try to cherish the time I have with him (which now does seem to be running short)?

I'm in my early 30s and almost everyone I know who's my age or even a decade or two older still has healthy parents. For my few friends who have lost parents, they lost theirs suddenly. So I feel very alone in this strange netherworld I've been in for years now since we learned that my father's cancer was incurable.

When he was first diagnosed, his doctors didn't think he had more than a year or two to live. I moved back to the city where I grew up. We all panicked. It turns out he's far outlived all predictions. My relationship with him went through some tough times in the first years after his diagnosis -- we all reacted to his diagnosis very differently -- but it's super strong now. We enjoy and respect and love each other.

Sometimes I feel like living with this has made me older and younger at the same time. I feel older in that I've made peace with my parents, made a lot of peace with my own fears of illness and death, and learned how to ride the waves of anxiety without getting sucked in.

But I also feel like it's been a struggle to grow up in the typical ways that one does in one's 20s. I haven't felt that I've had the freedom to explore very much. No trying living in different cities, no throwing myself wholeheartedly into my hobbies, no going on long trips even (what if he had a sudden downturn while I was backpacking in Nepal?). I've had a few relationships, but also spent years at a time not dating at all. I'm definitely not in the place I'd like to be relationship-wise, which would be in a committed, long-term relationship. (Added challenge is that I'm gay, so if I want to date I generally have to go out of my way a bit to be around other queer women.)

Dealing with my father's illness has taken up so much of my time and my emotional energy that I wish I could've put into my own interests. I know that over the years my anxiety has made me spend more time worrying and more time actually physically with him than was really necessary. I'm much less anxious now. But...I do want to prioritize spending time with my dad, since it seems likely we don't have that much left (his health has gotten much worse in the past six months). And it makes life a lot easier for him and the rest of my family if I take responsibility for some of his medical appointments. So I end up spending a day or two a week with my family. And it is draining. On top of a full-time job, it doesn't leave me with that much energy or time for the things that I want to be doing: dating, looking for a new job, making art, seeing my friends, etc. I feel like this wouldn't be so hard if it didn't feel like I'd already been putting my own wants and needs on hold for so long already.

I have found some things that reliably support me: yoga, meditation, hiking, working out, friends. I try to spend as much time as I can on these things that nourish me. And I've gotten a lot out of therapy, though I don't think I need it right now. At this point, mostly what I'm looking for is to feel a little less alone. And maybe to have some idea of what is normal or expectable in this kind of situation. Sometimes I feel so "behind" when it comes to relationships and finding some new awesome job and writing a novel, but then I remind myself that most people don't (I think) have this sort of constant draining worry tugging at the edges of their lives. Or this practical need to take someone to medical appointments. Or this knowledge that we can't plan on years together, so we really do need to take advantage of the time we have. Sometimes I think it must be like this to have an invisible chronic illness myself.

Have you been here? Know anyone who has? Have any words of wisdom, for how to live now and also as my father does die? I'm a big reader, so books/blogs/articles are especially welcome too. Or movies...songs...I'll take anything.

Thank you.
posted by zahava to Human Relations (12 answers total) 16 users marked this as a favorite
Best answer: Well, speaking as a caregiver of my dad, who has dementia and needs 24/7 supervision (and may not die for a number of years as he is physically healthy), the #1 rule for caregivers is to take care of yourself first. Even if you're not sitting by his bedside, so to speak, you sound like you've been putting more attention than appropriate into "being there" just in case his time came sooner rather than later. Yes, that wears on you as time goes by.

You may want to join a caregiver support group, or something arranged by a hospice society (even a hospital), for perspective. (Even then, many of the people you would meet would be spouses your father's age.) There is a vast increase in the number of people who are going to be living well into their elder years with a chronic disease and demographics say it hasn't peaked yet, and the percentage of people in younger generations to be caregivers or "just there" like you is smaller than ever before. You are not by any means alone.

Caregiver's Survival Guide -- free eBook

AARP best books for caregivers is a (one example of a) resource/social media site for caregivers

This is so difficult, and I know what it's doing to you emotionally and psychologically. You need to consider what your goals are and how being strapped down like this serves them. I have a rejiggered set of life goals myself that at least allow me to see and end to the tunnel and something that will make it "worth it" in the end. If I didn't have that it would certainly feel bleak.
posted by dhartung at 5:25 PM on June 30, 2013 [1 favorite]

You have been there for your dad, made whatever peace can be made (it sounds like) and shown him your love in every possible way.

If you were backpacking in Nepal and he died, would it really be so bad? He would go knowing you loved him, and that you were doing something that made you happy.

I don't know your Dad of course, so maybe it's more complicated than that. But if you can, I would consider letting go of that fear of not being there at the end.

Both my parents died young, and suddenly, and I was not there (at school for the first, lived too far away for the second). And it was hard, but not really any harder for me than for my siblings who were there. I had had good conversations with them (thankfully) before they went, and I know that they knew I loved them.

If you are not all he has, if he will be well taken care of even in your absence, then I would try to do what you can to live your life and stop saying no to travel or whatever else you need to do.
posted by emjaybee at 5:56 PM on June 30, 2013 [2 favorites]

Both of my parents died young as well. One died suddenly and one died slowly. Is he at peace? Because, you know... this isn't about you. It's about him. Spend time with him, talk to him about anything he wishes to talk about. If he's at peace, then you should be as well. I know it's hard and there's no easy answer. Almost all of us will have to deal with dying parents. Help your dad live his last days well, love him, pray with and for him, and tell him you love him.
posted by brownrd at 6:09 PM on June 30, 2013 [1 favorite]

Best answer: I'm so sorry you are going through this. I was the primary caretaker when my father-in-law was dying. We had our little rituals: he loved to sit and talk to me when I was making supper, and I would make him his coffee afterward and serve him a lemon square. I'd give him his morphine at nap time. It was sad, but we had a good time together.

In between, there were doctor's appointments. What helped me was feeling that he really needed an advocate, because he had dementia and couldn't remember anything related to the appointments, or when to take his meds, etc.

We spent a lot of time talking about his childhood, and just listening to the story of his life, which was remarkable. He lived in Birkenhead during the Blitz, and his home was bombed out twice. I asked him how he'd gotten through it. "Fire warden Billy! I put the fires out with my sand!" He was 15 at the time. I remembered how I was 15 and simply going to high school, worried about my algebra grade.

Shortly after he passed away, my mother collapsed with a hematoma and was operated on, had seizures and a stroke, and was in a coma for a month.

I am not sure either method of death was more desirable, but my father-in-law spent a lot of time on Ativan and worrying about his impending death, despite the drugs. So maybe my mother's was easier, if unexpected. Certainly the month that she was in a coma was one of the most anxiety ridden of my life.

I think the most you can do is honor your father's life and now spend as much time as you can with him. He surely must be lonely in his anticipation of death. We are all going there, eventually. It's very stressful, I know, and any kind of support group you can get to, via the hospital or whatever, will be good for you. I am sure he doesn't want you to stop your life for him.

Can you get away from work and family obligations for a few days? To get some perspective?

What was really anxiety-producing for me was the anticipation of death. Some people seem to be okay with that and get on with their life, knowing that it will happen sooner or later. But with anxiety, it can ramp up and get your goat.

Do you think anxiety meds might help with this anticipation? Another thought is to get with some art group or poetry group to express your feelings related to this, and maybe socialize with people your own age. Or even a trivia night at a bar. A lot of people have ill parents and/or other stressful family events going on so that might be helpful, a night of fun, trivia or pool, etc. to counterbalance the rest.

I wish you and your family well and if you ever want to talk, feel free to memail me.
posted by Marie Mon Dieu at 6:30 PM on June 30, 2013 [1 favorite]

Best answer: I've done a little research in this area because my dad died five years ago after a long battle with Parkinson's. I was 37. I spent most of my 20s and 30s traveling every weekend to see him (my family has some major toxicity and one thing I put my foot down on was moving there) and manage his care. Adding to the weirdness, Dad was over 40 when I was born so he was the same age as the parents of other caregivers I spoke to but the other caregivers were much older than me.

Unfortunately, there's very little organized support for younger caregivers - Google will suggest that you mean "young caregivers", which seems to be limited to people under 25. News pieces like this one suggest that younger caregivers are more likely to gain support online, but the sites mentioned are specific to diseases or conditions as opposed to a generalized caregiver site for younger adults.

It sounds like you're burning out and could use a respite. I get that you want to spend as much time with your father as possible, especially if his health is deteriorating, but if you and he know where you stand with one another it's really okay to take a little break and recharge. I wasn't there when my dad died, but I had seen him a few days before and said my goodbye (he had dementia at the end) and while some family members tried to make me feel guilty about not having kept a vigil, I have no regrets.

I don't know how helpful all this is outside of letting you know that others of us have been there, but I will add that in the intervening years since I lost my dad my mother has been diagnosed with Alzheimer's. This time, though, I'm leaving a lot of the caregiving duties to my brother, partly because I was diagnosed with a systemic autoimmune disease a couple of years before Dad died and partly because I burned myself out helping with my dad while my brother was off having a life and I just...can't.

This is really hard, especially when your peers don't understand, and I wish you all the best. Feel free to MeMail me.
posted by camyram at 7:48 PM on June 30, 2013 [1 favorite]

Best answer: My dad got diagnosed with an eventually fatal illness when I was in my late teens, and he died when I was in my late 20's. It was about ten years (minus two months) duration of him dying. I hear you on nobody else your age having this problem. Two friends of mine were caregivers for grandparents and got it, another friend ALSO had a sick mother and she just didn't relate with me at all somehow. I used to go to a caregivers support group at my work where I was the youngest in it by 20 years and I was the one that apparently made everyone else feel better about their situation.

I pretty much did as you've been doing. I moved about an hour and a half away for college, and didn't move home again, but then again, I was close enough. I sure as hell didn't even bring up the idea of doing study abroad--I think my mom would have killed me for even mentioning it. I still don't go anywhere much. I didn't do much in the way of long trips, because even if I did go away for a week, it seemed like some other relative would die. (Pretty much happened too--my family takes about a decade for anyone to die, long and slow.) As for jobs, I settled down into one and decided that I wasn't going to even bother trying to figure out something else to do with my life until after my dad was gone. (Sadly, six years later, I am still ridiculously stumped on this topic. I'm not sure if waiting really helped that any or just made it worse because I still can't see anything else I can do but what I do now.)

As for dating--well, I had a few boyfriends in the first half of the duration. And that made my family situation so much worse because I got yelled at for neglecting my family and my dying father. And likewise, the boyfriends didn't like the kind of situation I was in and would get upset about it. I felt like a pushmepullyu, no matter what I did I was neglecting someone and making them miserable. I got engaged so my dad could see me get married off (even though uh, it wasn't the best idea to do that), but didn't go through with it, and as far as I could tell my dad didn't want me to marry the dude anyway because it made him cry hysterically. Eventually I just realized that I couldn't date while he was still dying, it just wasn't going to work. I couldn't serve two masters at the same time, as it were.

I did throw myself into my hobbies, but they weren't ones that interfered with the situation. So I had that, at least. I don't know how involved yours are that you are prevented from doing them. Mine do tend to be things that can be done at home.

Having been there and done this, well.... I don't think I could have really done much differently other than maybe trying to work on the job thing a lot earlier than I did. (Then again, the economy was tanked frequently, so odds are I probably would have ended up in the same stuck place even if I'd been worrying about finding another career for when that job wound up.) When you are dealing with someone who is dying, that has to take priority, or at least you will feel evil and guilty if it doesn't. You just don't have the time or energy for mating and dating because you feel evil and guilty if you start dividing your time for someone else--and the someone else will probably get upset that they can't be the priority (plus they probably feel evil and guilty for wanting to be priority over a dying parent).

I just pretty much have to accept--and mostly I have--that that time is wasted and gone. I AM behind compared to everyone else, and always will be--but then again, I probably would have been anyway since I am quite the slow bloomer. But what can you do about that? Bail on your dying dad while you go off to Rio for six months to fuck somebody? Right, no, that's not going to fly. This is the price you get to pay for having a family--most people don't pay that one so early in life and it's not fair, but that's the cards you drew. I can't think of a way for you to do what you want now as this situation goes on. You just end up having to wait and wait until the end. It's too hard to juggle, especially as the situation gets worse and your free time is even less and the guilt kicks in even harder. Like, you feel guilty if you PEE because he might die if you leave to pee. That's a fun one, right there.

Though something to watch out for is the post-death experience, where you STILL don't exactly feel like you can run free because your mom is grieving and needs you--it's taken most of the years since he died for her to finally cling to me less, so that's been another thing for me to be guilty about--having to be her husband for her because we have nobody else around. It's incredibly hard to extricate yourself and I don't know how your family is, but getting out isn't just right when he dies--it's a slow process.

I am sorry for what you are going through. It's a truly awful thing and most people don't understand it unless they've been there early on too.
posted by jenfullmoon at 7:58 PM on June 30, 2013 [4 favorites]

We're all dying.

He's had his chance to raise a family, make a career, live life.

If you don't change anything, you'll be dead before you ever have the chance to live.
posted by flimflam at 8:59 PM on June 30, 2013 [3 favorites]

Best answer: His oncologist can put you in touch with a support group. I know you've seen this suggestion before. Please consider it.

A fiction related to cancer patients is that they are all the same. We aren't. The working end of my survival curve has been flattened several times. I found out about my cancer one spring day. I was supposed to be dead by Christmas. My treatment went well, and that didn't happen, but, since my cancer isn't curable, I was supposed to be dead within 48 months. That didn't happen either. I've been on hold now for almost nine years, and I'm still in remission. My medical profile is only part of the struggle with this goddam illness. The other part is what happens after your doc gives you the news, and you suddenly wonder if you'll be able to see the guy you voted against in the last election get put out to pasture. Or how you are going to look your kids in the eye, with them knowing...

The reason things are as good (for me) as they are stem from the support staff at the Seattle Cancer Care Alliance. They made sure RedBud knew all the whats and wherefores. They were there for her while she made her terrible adjustments, and helped her face my prospects with me.

Coming back from the edge of the pit is something we all handle in our own snowflakey way. I say this as a patient, and as an observer to the effects of my illness on my loved ones. You are not alone in your trials, but you do have to carry your part of the load: love and kinship make bonds with deep and varied strands. You outlined the parameters well, and eloquently. Your father's life wasn't the only life that got fucked up by his cancer. Please don't overlook the role that stress has played in your life. It sounds to me like you care becoming more and more aware of the processes that have defined your life. I suspect dark thoughts in the offing are troublesome to you.

You probably can benefit from the experience of cancer care specialists. They have seen manifestations of what you said in all its various flavors. They won't lift your burden, but they may be able to point out some things that will help you deal with it. I have no way of knowing whether you would benefit from support group counseling, or whether a few discussions with a cancer clinic's social worker would be more helpful. If you contact the hospital that treats your father, they may be the ones to direct you appropriately.

In any case they can give you information....knowledge is light.

I really, sincerely, applaud your efforts to be there for your father. Get a few ideas from those who deal with this situation routinely before you make any major decisions.
posted by mule98J at 10:55 PM on June 30, 2013 [1 favorite]

Your dad will live or die regardless of what you do, or where you are. You can't live his life, and you are not living yours if you really feel as trapped as you sound. You mention family - can't they take over while you backpack in Nepal, take the canal cruise in Europe or whatever? Burnout is reversible if you change your weekly routine.
posted by Cranberry at 11:28 PM on June 30, 2013

Best answer: I always lived very 'safe' and I think this is where your anxiety is coming from, because it's something you're doing too.

My father died when I was 16, from an illness, over two years.

I'm not going to touch on counseling and resources because others have said it better than me, and personally, things like that never helped me at the time. I'm also not entirely sure it's the true issue either.

I'm about your age now, and I never got out much -- never did typical 'young person' things, never went crazy. No drugs, no sleeping around, no being stupid. It wasn't because of my Dad's illness, necessarily, although his death aged me in a similar manner -- it's hard to be a typical teen when your Dad is dying. Nevertheless, me holding back wasn't because of him. It was just because of me.

Part of me regrets it now-- I'm friends with 26 year old who thrives on adventure, and seeks experimentation constantly and new experiences. I'm also friends with a few 21 year olds that invite me to parties and have 'lived' more than I ever will. More boyfriends, more love. Part of me craves the experiences she's having.

And there's part of me that wishes I could be more like them, could have lived more like them, and experienced more things when I was younger. Wild, crazy, fun things. So many close calls. So many stories. My stories aren't like that.

But that life kinda is a concept, you know? Not really reality.

Because the reality is, at least in my case, my friends aren't really happy either. No matter what they do. My adventure seeker friend? Constantly looking at external circumstances to validate his self worth, absolutely feels that gnawing need to 'do things!' at the expense of real solid love-- because he's always looking beyond where he is. He's always restless, and he can't just stay still. It's never enough. No experience is, and no person is ever 'enough' either. He always wonders what is around the corner, even with people he dates, and as a consequences, pushes wonderful people away.

And my 21 year old friend doesn't sleep around because she enjoys it and is a liberated woman (which I can totally get behind if that were her motivation)-- she does it because she feels ugly and wants validation and often regrets it later. She has no self worth, and she has a terrible relationship with the people she sleeps with. Often, she loses control and can't help herself. She often recounts her exploits with a mixture of shame and regret.

Both their lives seem exciting to bland, straight-laced me, and I am in awe of them; when they tell me of their stories, I start to wonder about my life relative to theirs-- couple years older, but full of nothing. It made me depressed for a time. It made me feel as if I was living 'wrong'.

The quicker I realized, I was 'living' just fine that there isn't a 'wrong' way to live, the easier it got to... actually live and be happy again. I don't want to live like my friends, necessarily. In my case, I was comparing myself to them. I'm not sure if this is what you do as well, but you mention your friends, so it's a possibility.

Life isn't a movie, but, a lot of people wanna live it like one. That's what I realized.

So how did I get over it? First thing is first-- no regrets. Get rid of that gnawing feeling of 'missing out' that is eating you up inside out of the way. You didn't miss out. Yeah it would have been totally awesome to get drunk in Amsterdam. Except the part where my friend almost went to jail in a foreign country for being drunk. It's a great story, but could have easily turned terrible. A lot of those kinda stories often do.

There are good and bad points to living 'more' but again, you're not living 'less' just because you never did the typical things people are 'supposed' to do in their youth. And you didn't miss out just because you lived differently. You just lived differently. Life isn't an experience bar, you gotta fill up with stuff people deem 'worthy' of doing before leveling up. Typical things everyone does like travel extensively, or meet a lot of cute girls or whatever. 'Worthy' experiences differ from person to person-- there's no wrong or right way to live.

Also these ten years gone by... no, you didn't 'find yourself' while backpacking in Nepal necessarily. But you found yourself in other ways, you know? You did things that you had to do, for your family, that made you who you are today, and that maybe gave you the life skills to be a better person in a way, and grow, and find yourself in a way that being young and silly and adventuring wouldn't. Sure it forced you to grow up, but it also makes you who you are now. And I'm sure that person isn't a bad person.

And there's a positive side to living 'less' and a negative side to living 'more' sometimes -- not really applicable to you necessarily, but they're still drawbacks. I don't envy the STDs that my friend has gotten, for example-- or her fears when she needs another test-- and I don't have to worry about them. I also don't really envy the constant gnawing feeling my other friend has-- it permeates his interaction with everything and everyone and hinders his happiness.

The other thing I realized is that age is just a number-- it's only 'too late' to look for adventure when you think it is.

It is absolutely never too late to do what you want, and feel like doing. Early thirties is not too old to date a bunch of girls, or backpack around Nepal for three weeks. It's a fallacy to think your life is 'over' after your 20s -- your life is over only when you die and that's it. Before that, your life is just beginning with every new day. It's cliche, but it's true. You don't need to be the silly 20 year old to be... silly and have fun. It's never too late. And it's not your Dad's illness holding you back from that.

My Dad... I wasn't always there for my Dad, but it didn't stop me from loving him any less. Your relationship may be different to mine, but, my Dad felt like a burden to us while he was sick anyway. He also wanted to see us being happy. I don't think he would have gotten resentful had I gone out and lived more and traveled. He would have been happy if I was happy.

My brother, who was 26 at the time of my Dad's death, was too wrapped up in being that 'youth' that he was never there for him or us. And you know what? He regrets it on some level now, how much he ignored my father when he was dying-- even though nobody has ever blamed him for it. He didn't compromise his youth-- I did-- we make our choices, I'm happy with mine. He's not with his.

So whatever you do-- live authentically but don't regret the actions you decide to take, either way. It may mean compromise, like still traveling but cutting trips shorter than you'd like, or checking in often, but... you know what? You kinda know when it's the real end, we did. We could feel it, even though the prognosis said 'maybe a few months, or a few years,' we could tell it was a matter of days. When he did die... I won't lie, it's an excruciating pain and I'm sorry you'll have to face it. But in our case, because he was suffering for so long, and so were we, it was kind of a relief in a way. It was 'over' and it kind of felt like starting anew. I have no words of wisdom about it, except that the wound never really goes away, but you learn to live despite it. It gets better. It truly does.

And the past is he past-- it doesn't matter. All that matters is where you go from here and that you don't regret your actions. So book that trip, get on that dating site. Unpause your life. Your Dad isn't stopping you from writing that novel, just like mine didn't and still isn't even though I've yet to write mine.

Sorry for how much I wrote. Feel free to Memail me if you feel alone.
posted by Dimes at 8:47 AM on July 1, 2013 [5 favorites]

Best answer: My mom was really sick when I was little: so sick that it threw a very long shadow over our family. By the time I was 14, she was no longer in imminent danger of dying. She was just chronically ill. It took me until I was 26 to realize that though, because she still talked like she was going to be dead within the year. That terrified me so much that it took me 12 years to realize that if someone spends 12 years telling you that they'll probably be dead any minute, then that means that they are scared, not that they are dying. I guess what I am saying is: I know how you feel, I think.

For a long time I used to think that fear and gratitude were always intertwined: that without the fear of losing something, or someone, you would never be grateful for anything. I'm not sure any longer if I think that is always true, but I do think there is often a connection. And I think that is a part of how you live well and how you move forward: you may not have been practicing some other typical young adult things like dating or adventuring, but it sounds like you have been practicing gratitude (in this case, for your family) and practicing facing your own fears. Those are things you can take out into the world with you, and they are skills a lot of adults do not have and never acquire.

And my mom always says that sadness hollows you out and makes more room for joy. When I was younger, I accepted that as a unquestionable fact, and I used to imagine that I had an unhappy gnome carving away at a cavern inside me and that happiness was a substance like water that had weight and mass. What I didn't realize then was that it was, like my mother's imminent demise, also not a fact, but a prescription against bitterness. Misery can do a lot of things to a person, including turning them really mean. But if you fight against that and instead try use your deep and extensive knowledge of unhappines to recognize real happiness and real joy when it stumbles across your path, then you'll come out of the other end of this ordeal okay.

Also, one of the things that helped me start digging my way out of the hole I'd been in for so long when I was so terrified about my mom was the thought that finally occurred to me: 'If she dies tomorrow, it will suck and be horrible and miserable for a long time, but I will survive it, because I am good at surviving things, and so I will be okay.' You will too.
posted by colfax at 9:33 AM on July 1, 2013 [1 favorite]

Response by poster: Thank you all. I'm touched by your thoughtfulness and generosity, and also feeling a lot of empathy for the losses you have faced and are facing.
posted by zahava at 11:56 AM on August 11, 2013

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