Mourning the loss of a loved one as you knew them?

July 8, 2015 5:41 PM

My dad had a massive stroke in January. He has made remarkable strides, but he will likely never be the same as he was. How do I learn not to be sad about this?

My previously extremely healthy 60 year-old dad had several serious health problems over the winter, culminating in a massive stroke in January. At first he could not swallow, talk, or walk, and he lost all feeling in his right side. Six months later, he is able to speak slowly, but very well (no cognitive effects), he is able to walk for short periods with a walker, and he is regaining some feeling in his right leg. His recovery has been remarkable and I really thought he would ever do as well as he is. However, it's unlikely that he will progress much more, especially in terms of his right side.

Every once in awhile I feel a surge of overwhelming sadness that he will very likely never be the same person that he was before the stroke and all of the health problems. He was an avid runner and marathoner, and he will likely never run again. He used to be a voracious reader, but now reading an online article is almost too much for him. He loved to drive, and he can't anymore.

And I feel selfish, but I think about how these things affect me. I live several hundred miles from him, and he used to visit me several times a year, which he cannot do. I miss lending him books and discussing them with him, and going on hikes with him.

I know I should be extremely grateful that he is even alive, is still mentally sharp, and can even speak - and I am. But these pangs of sadness can be overwhelming sometimes. How do I learn to accept that I'll never have my dad back the way that he was?

posted by anotheraccount to Human Relations (22 answers total)

My mom had a horse-riding accident about 5 years ago that left her wheelchair bound, and very reliant on support from nurses for lots of things.

It took me a while to even find the graciousness to be grateful that I still had her around, because the sadness at the losses, both for me and on her and my family's behalf, was, like you say, overwhelming.

I couldn't stop focusing on things like knowing I'd never be able to take a family holiday with her and my children (which I don't even have), or have her be able to attend my wedding (which did happen - we're now divorced. Life is just *full* of surprises). Selfish, I suppose, but they were the losses that I felt most keenly.

That said, my relationship with her is now closer than it previously was. I genuinely do appreciate time with her much more than I used to, because I now know more about what I've still got left to lose.

In terms of getting over it in the short term - I ran. I cycled. A LOT. It hurt, and when it hurt, I would scream at myself internally that I was so fucking lucky to be able to do those things, that my mom would love to be able to feel that pain, to have that control and fitness and agency.

Maybe not the healthiest approach, but essentially it was a way of not running from the pain and the loss, but of feeling it and letting it happen.
posted by Jon Mitchell at 5:56 PM on July 8, 2015 [3 favorites]

How do I learn to accept that I'll never have my dad back the way that he was?

By grieving. My grandmother had a slow fade, after her first stroke and then emphysema. The vibrant, strong, and active woman* I had grown up with was suddenly wheelchair bound and always tired, and then slowly declined over her last few years - and it killed me to see her in her new condition. I had a real struggle with it, until I realized I was mourning for what was. After I came to that realization, learning to accept the new normal was easier.

So let yourself grieve. Circle of life and all that - not trying be glib, but... you gotta let yourself feel what you feel so you can get to accepting that... well, you know. The sooner you do that, the sooner you can get to enjoying what time you do have left together.
posted by Pogo_Fuzzybutt at 5:56 PM on July 8, 2015 [5 favorites]

You don't. It's practice for his next stroke, when he won't come back as strong, and the next, when he can't even talk anymore, then the last one...

Drinking until I passed out every time I woke up for a week got me through the worst of it, but four years later I still can't talk about him without tearing up.
posted by booooooze at 6:14 PM on July 8, 2015

You are absolutely allowed to be sad that you've lost the dad you had. Please be kind to yourself and don't beat yourself up for feeling this way. This IS grief. (Therapy?)

And... you love your dad now anyway. And you still enjoy spending time with him, even if that time is now different. And maybe you guys need a new "thing" - with my granddad (whom we lost a few weeks ago), my cousin would cook hot dogs and have dinner with him, and my dad would bring hershey kisses and they'd enjoy a piece of chocolate, and I'd watch Hogan's Heroes with him, and we'd laugh. And those are not things we'd have done before he declined, but he enjoyed those things, and so did we.
posted by Ms Vegetable at 6:22 PM on July 8, 2015 [5 favorites]

One of the teachers who trained me as a hospice volunteer said that he doesn't really believe in the concept of "preparatory grieving", which is something people talk about happening when a loved one is dying. He said, "I think you grieve each loss as it happens." In other words, people who feel the grief of loss as they sit at the bedside of their loved one who is dying are not feeling grief that their loved one will die. No, they are feeling grief over all of the aspects of their loved one that are already gone.

I don't think you are selfishly wanting something superficial or thinking only of yourself. I think you are honestly and understandably mourning the loss of all of the different aspects of your father that you can reasonably say are gone forever. Of course that's sad! And your wish that he could enjoy things that used to make him happy is *really* unselfish. Don't beat yourself up. If you weren't sad, if you didn't miss all of the things you shared with him, you really wouldn't be quite human.

The book "Who Dies?" might help. It focuses in part on what makes a person who s/he is, what the core essence is. It might help you to both mourn the loss of things you shared with your father, and also open your eyes to what's still there and, in fact, what might be even more present now.

Sending you hugs. This is very sad, especially since you have had such a terrific relationship with what sounds like a really wonderful dad. Now you may have the opportunity to be supportive of him to feel some of the joy and privilege he felt when he was supporting you.
posted by janey47 at 6:28 PM on July 8, 2015 [13 favorites]

Being sad is okay. It's healthy, even. I feel that with traumatic events, we don't truly begin to process them until we've felt sad--and angry, too. So give yourself permission to be sad for what once was. Cry. Get angry and yell.

And try dropping how you 'should' feel. Try looking at how you actually feel, the thoughts and emotions that are coursing through you. Be mindful of them, examine them, allow yourself to truly feel them. 'Should' sets up judgements, and can leave you feeling like you're a failure for feeling what you truly feel.
posted by feckless fecal fear mongering at 6:35 PM on July 8, 2015 [4 favorites]

If inside he is the same, that is a wonderful blessing. It won't always be the case. One day he will be gone and you will be looking back on these days as a happier time, when at least he was there and you could talk to him.

My father passed away three years ago. I would give anything for another conversation with him, even if it was a slow one, even if it was awkward and not like the free-flowing exchanges we had for almost all of his life. You can do that. So make sure you do.

And forgive yourself for feeling things that are uncharitable. When my father was declining his voice on the phone got low and weak and I felt flashes of annoyance at the time, wishing he would speak up. He couldn't speak up, of course, but that only became evident to me later. We feel what we feel, and it's not always what we 'should' feel. The mortality of our parents and loved ones is such a monumental weight that it's no wonder it screws with your internal compass.

Good luck with everything. Your father sounds great and you are lucky to have him still.
posted by StephenF at 6:37 PM on July 8, 2015 [5 favorites]

I've been mourning the loss of my father as he was for two years now. One thing that has helped me in particular has been seeing the things my father contributed to our community while I was growing up that are still there: Trees he planted when I was little that are big now, bushes he planted alongside roads I drive on a regular basis, perennial flowers he planted that bloom every year. He used to walk the roads of my hometown from end to end, and while I'd had this notion previously, now I'm pretty sure it's the case: When he does die, I'm betting his spirit will walk there forever—especially since he's no longer able to walk and lives far from the streets he roamed.

Going through his things as we got his house ready to sell and tending to his property has reminded me of why he loved the things he did and how much he enjoyed them for years. I'm glad he got that time to do what he wanted on land he loved, and do guerrilla plantings throughout our community. My father was a complete jerk to me and my family as I grew up, but I do still mourn his loss of freedom—I'd imagined he would walk those streets until he died, so it's sad to see him stuck in a nursing home.

Going through his stuff made me laugh, too, and made me feel like now I knew all the secrets of life I hadn't understood as a kid. Finding ways to joke with my father and remember his wacked-out sense of humor and also embrace the hidden complexities of his life that I uncovered has been good, even if it's been accompanied by acute loss.

You should read Roz Chast's Can't We Talk About Something More Pleasant? It's about this process, and it's good—and funny as hell.

Also? The hallucinations my father now gets on occasion, due to damage from the stroke, have been a continual source of strangeness and amusement. The upside is that I like to think that he's consciously in touch with another plane—one I can only reach in dreams. It's not all bad.
posted by limeonaire at 6:48 PM on July 8, 2015

"I miss lending him books and discussing them with him" - do audiobooks work? I had/have brain stuff and right after an episode, reading print is exhausting but listening to an audiobook or podcast is a great alternative for me, easier to pace and follow. You can get short podcasts (The History of the World in 100 Objects is a brilliant series with short episodes or audiobooks from a favourite author and still share that experience if he finds listening possible.
posted by dorothyisunderwood at 6:50 PM on July 8, 2015

I think about my dad dying in 2 stages - the first, more traumatic one was his initial stroke because he lost a lot of who he was in that; the second was his actual death. I regret not taking more time with him between the 2 events.

The best thing you can do is let yourself be sad for the event, the parts of him that you are feeling yourself missing. At the same time, you can find ways to connect with the person he is now - maybe reading him short stories and talking about them together over the phone or skype?

The other thing that I wish I did with my dad was talking about his memories - what his parents were like when he was little, how he felt when he met my mom, how he felt when me and my sister were born, what he was like in highschool - really anything he remembered.

The most important thing to remember is that everything and everyone changes. Just because your dad can't run marathons anymore doesn't mean he's not himself. This is a new stage of his life and it sounds like he is doing well and will be around for a while. Get used to your new normal with him, and do everything you can to stay connected with him. It will be hard, but you won't regret it.
posted by elvissa at 6:51 PM on July 8, 2015

An un-zen like parable. I am almost 86. Fell and broke an ankle. Two months later, with ride from a friend, went to coffee shop I used to go to every morning. A guy I would sit and chat with saw me and said: I see you are still vertical. I realized in a moment of "enlightenment" how good being vertical is.
posted by Postroad at 6:55 PM on July 8, 2015 [23 favorites]

My father in law aggressively fought an aggressive brain tumor for three and a half years, and after each surgery, chemo, or radiation, there was a little bit less of him there.

We continued to listen to music, go to art museums, and do other things that he loved for quite some time.

The hard part is when you and they both expect something, and it suddenly isn't there, like a word, or an action, and you have to re-imagine that person now in your head. But you can go on doing things you enjoy together, and talk about what you're doing.
posted by nickggully at 7:20 PM on July 8, 2015

I'm right there with you, and I am so, so sorry you're going through this. My father had brain trauma as a result of a fall almost two years ago and has not fully recovered. I feel sad about it Every. Single. Day. I cycle through every feeling, from anger and despair, to gratitude that I still have him, to hope that he will continue to improve, to panic that I'm starting to forget what he was like before the accident, and so on.

There are some good pieces of advice here. Sometimes they'll work to make you feel better, and sometimes nothing will work and you just have to kinda... wallow in it. Maybe that's not healthy, but that's grief. I find if I don't let it out sometimes, it festers inside of me.

Try to find happy moments with your dad. Like a few people said above, find something new you can share and make that the "normal thing you do with your dad". I've been a writer all my life and my father never, ever wrote anything down. In an attempt to help him regain his language, I had him start writing every day in a journal. Now when I visit him, we sit and write in our journals and then read them out loud to each other. Pre-accident, he never would've done that but now... it's a nice little bonding thing we do.

Please feel free to me-mail me. Hugs to you and your dad.
posted by silverstatue at 8:43 PM on July 8, 2015 [2 favorites]

I'm not especially close with my family. That being said, my mother had a massive stroke 2 years ago. I used to attempt to talk to her on the phone in order to improve our relationship, due to the fact that it gave me an emotional buffer and I live a few hundred miles away. I was on the phone with her and heard her slurring speech and I knew, as a firefighter and EMT, what was happening. She wouldn't let me call anyone, even my dad, who was at work. 5 days later she ended up having the big one in the ER and then went through DTs, which I sent dad home for and I stayed at the hospital. I blame myself a lot, even though I know, rationally, that it wasn't my fault. 6 weeks of ICU and rehab later, she came home, and really wasn't the same person. Over the past two years, she has seemed to give up and interacting with her is very hard for me. And I know that makes me selfish. Now, she's been back in the hospital again, for kidney disease...and there's dialysis and my dad and I have to have many serious talks. Again, I feel selfish because all of this is a constant source of stress for me, and I have been grieving since her stroke and throughout her decline. I bottle it up and I explode. I talk to friends and have a wonderful therapist. And I try to remember all of the good things; to celebrate what happiness we did share.
Neurological events are difficult because the brain is still such an unknown. They're different from cancers or cardiac issues because we see people recover fully from those issues more often than previously thought possible, so the unknown is another source of stress.
I advise being realistic, but as positive as you are able to be without putting yourself in any extra pain. Take care of yourself; understand that your feelings ARE valid, and good counselors/therapists, friends, and clergy (if that is something that helps you), are an invaluable resource for working through your feelings.
Do not beat yourself up for how you feel. I promise you from experience, that it does no one any good.
Memail me if you need to vent.
posted by sara is disenchanted at 9:01 PM on July 8, 2015

At 55, my dad had a seizure that left him nearly mute. He died of a brain tumour five months later. I felt heartbroken, cheated and terrified.

While shopping for shoes and a belt for the funeral, my girlfriend chatted with the shopkeeper about my father's death. The old guy just said, "That's life." He didn't mean it in a belittling way. There's just some stuff you can't do a damned thing about.
posted by bonobothegreat at 9:11 PM on July 8, 2015 [2 favorites]

I think it's important to allow yourself to be sad about the changes in your dad's life and health. At the same time, keep in mind that change is a given and a constant in anyone's life. We are never the same as we were a year ago, but the changes are generally too small and too gradual to see. Now your dad has been going through some more rapid changes, that left him unable to do some of the things he did before, and it's completely normal and okay to be sad about that.

My sweetie had a stroke last year. He is back to work, and also still doing fysiotherapy as rehab, but has regained most of the function of his right arm and leg which were fully paralised after the stroke. However, it seems likely that among other things his gait will be affected forever. He cannot run. I'm not sure he will be able to drive again. He will never be exactly like he was before, and I'm allowed to be sad about that.
But we all get older, we all gain dents and scratches over time, and sometimes they come suddenly. That makes them harder to deal with, this is true.

Be kind with yourself. You are allowed to feel sad for him, and you are also allowed to feel sad on your own behalf because there is also an impact on your life. You are not being a bad person: you lost something, and you are grieving that loss. It's normal. It's also normal not to be able to feel grateful all the time. After all there is a real loss here. So please allow yourself to have these feelings, and they will most likely get easier to handle over time.
At the same time, if you find that you can, it would indeed be very worthwhile to find some new things to enjoy together with your dad. That's great advice and I can only second it.

All my best to you, and my heartfelt sympathy.
posted by Too-Ticky at 4:11 AM on July 9, 2015 [1 favorite]

Best answer: I sympathize - there's someone in my life I feel similarly about, for different reasons, and it's been a slow and still ongoing process of coming to terms with that.

You may need someone you can talk to about this, someone who will let you say as many times as you need to "It's not fair, this sucks, I thought we would have more time before this illness did its thing, it sucks, it sucks, it hurts, it sucks." Maybe for a really long time. Therapy is good for this; so is a really, really good friend, but if you go that route you want to make sure you are being reciprocal and supporting your friend too, not just using them as a dumping ground. Writing the feelings out in a journal might be good too.

You may want to look at alternate ways to replace some of the things you loved doing together - as noted, maybe it's transitioning from reading to podcasts, or maybe instead of discussing new books you talk about old beloved favorites, or maybe you find some altogether new thing he can participate in that you talk about. Bird watching, or something - it's the time you spend together as much as the specific thing you're talking about that matters.

In addition to that, if you want to keep doing those things yourself (hiking, book club, whatever), do them. There are things that my family member and I can no longer do together, and we've found some good replacements for them. But those things are still important to me and I can still do them myself, or with friends. For a while doing those things felt like a betrayal, like if we couldn't do them together I shouldn't do them at all. But that's not fair to me and it's not what my family member wants for me either, so over time I have started to do some of those activities again. Sometimes it's sad to be doing them alone; often it fills me with wonderful happy memories, as well as making new good memories, and overall I am glad that I have kept those things in my life in a different way.

The other thing is to make sure that your grief does not cause you to close your eyes to who your father is now. He's still there. You still have time to spend together. He will have changed in some ways, and some of those changes may even be good as others are hard. You may have to form a new relationship. That's hard. But you can do it, and you may find some unexpected moments of grace in it, and some new closeness in your relationship, if you can find a way to stay open to that.

Good luck. It's so hard, and this is also so new for you. Time will help all on its own with some of this, hard as that is to imagine now. Part of your job is just to keep breathing, and let time do that thing it does.
posted by Stacey at 6:18 AM on July 9, 2015

Just joining the chorus here. I lost the dad I grew up with to viral encephalitis over a decade ago. He recovered and is active, but he lost most of his memories of me growing up and his own youth, and he went through a bunch of personality changes.

It's tough. It takes time. People grieve in their own way, and in some ways it's less-acceptable to grieve when the person is still right there. But you did lose something very tangible, as did I.
posted by QuantumMeruit at 9:52 AM on July 9, 2015 [1 favorite]

My life experience may or may not have any help for you now, but might be some consolation down the line.

My mother succumbed to early-onset rheumatoid arthritis when I was very young, so while I never had any memories of her before she was wheelchair-bound or bed-ridden, we were surrounded by people (including my father) who knew her as an active and vivacious young woman and would talk wistfully of who she'd been. She was frustrated, bored, and constantly in pain; my dad was exhausted from caring for both of us; I was a quiet, removed kid who spent a lot of time on my own.

When she died (during my middle-school years) we were grief-stricken but also--and this is something that felt shameful at that age but that I've come to accept as healthy--deeply relieved: that we weren't going to have to brace ourselves for further bad news (or false hope), that she wasn't going to have to endure any more corporeal suffering, and that our grief had a name... because all those years we were a "whole family" in the strictest sense, we were operating at minimal capacity.

There is nothing wrong with feeling sadness. You've experieced a loss. Just because your father has recovered somewhat (which is wonderful!) doesn't obviate that twinge, which is OK. Contradictory-feeling emotions can overlap. I'm a big believer in regret as a motivating force: being confronted with the opportunities we could have taken advantage of (but can't now) means that you will--without realizing it--develop a sharper sense of what you can do with and for your father at present. Best wishes.
posted by psoas at 10:51 AM on July 9, 2015 [1 favorite]

I think of myself as buddhist to the extent that I think of myself as being part of any structure at all, so it's unsurprising that this is a coping strategy that works for me (and therefor maybe it's not right for you?). But I remind myself primarily of two things: change (and mortality is part of that) is inevitable and constant, and no change in the present can take away the experience and joy we've already had.

So when we confront this sort of loss we're dealing with the pain of losing opportunity. Maybe that's not helpful for some people, but reminding myself of this helps me. You had a sudden severing of opportunity here, but we all deal with it constantly. Probably nobody reading this is going to have the opportunity to have their parent cheer them from the sidelines at a little league game at this point. None of us get to have our parents walk us down the aisle for the first time again. Probably we're not getting more bedtime stories. While those facts are bittersweet, we typically view them in a pretty matter-of-fact way. So for me, I find framing these changes that way helps me cope.

Our relationships with our parents, in particular, are not what they were when we were children. They evolved and changed, and if you are fortunate enough to have a good adult relationship with a parent it is never the less not the same one you had as a child. Yours is just evolving some more, and rapidly. It's okay to feel some loss about that thing you liked no longer being available to you, but it is a thing that was constantly changing in small increments before and you weathered that. You will weather this, in part with the help of your loved one who is still available to you, albeit in a somewhat changed way.
posted by phearlez at 11:02 AM on July 9, 2015 [1 favorite]

I wish I knew, honestly. But I can tell you that the pain gets less and you will get used to the new normal. I'm not sure there's anything you can do to speed that process along, but it will happen. And some days it will hit you all over again, but those days get farther between. I guess it's like any loss in that way. I won't share my story here, but I sympathize with you and I'm sorry for your loss.
posted by freezer cake at 5:25 PM on July 9, 2015 [1 favorite]

If you think a support group would be helpful, there are support groups for this. If you think having some people to talk to who have experienced similar around would be helpful, please feel free to memail me.
posted by freezer cake at 5:27 PM on July 9, 2015 [1 favorite]