Anticipatory grief fading while your person is still alive

[alaskaerin]

Has this happened to anyone?  That anticipatory grief fades into the background as you settle into a routine and a new grim reality?  I think it is happening to me, and I feel somewhat guilty about it.  At the same time, I feel like the reaction must be protecting me from burnout, etc. that is such a part of long lasting anticipatory grief.

I have only known that my mother is terminally ill with a tumor in her lung and brain for about a month (which was also when she found out), though warning signs were there even earlier.  It was horrifying and terrible every day, all day for about three weeks.  Now that I've moved her in with my husband and I and we have her settled into a kind of routine and I've returned to work for a few days, all of this is starting to feel horrifyingly normal.  I can no longer feel the sharpness and desperation of the situation.  I can even talk about it without crying very much.  

Am I a sociopath?  How can I have come to accept my mother's death so soon?  She is only 62.  She is one of my best friends.  Am I forgetting that, and thinking of it only as losing the sick, diminished person by my side today?

One possibility is that as soon as she experiences a precipitous decline I am going to feel it sharply again.  I kind of hope that I can get the feeling back.  I worry that I will regret not showing her my pain, lest she think she is unloved.  She has always been very insecure about how much my brother and I truly love her.

All this is complicated by the fact that she has expressive aphasia caused by the brain tumor, so can not communicate much verbally.  The brain tumor is also affecting her concentration, I suspect her emotions (which are unusually muted), and who knows what else.  When I try to bring up remotely serious topics she just says "Come on, Erin."  As in, "why are you bothering me with this?  I just want to watch mindless, harmless reality TV."

As I write this, I am tearing up a little bit.  I can't indulge the feeling because I'm at work.  Maybe I've just been shoving the feeling down so completely that it seems like it's not there, but it will come roaring back.  As I said, I kind of hope that it does.  My mom deserves for people to rage at the fact of her untimely death.  

I would love to hear whether others have experienced the same emotional fade and conflicting thoughts about it.

[kayc]

No that doesn't make you a sociopath.  Our brains are amazing organs, able to adjust to and cope with much if given the chance.  This has BECOME your norm.  The raging may come later after she's gone.  The fact is, she is still alive.  You could be in denial somewhat while the shock numbs you and protects you so that you can do what you must every day.
I took care of my mother in law nearly three years, day in, day out, while she was bedridden with cancer.  I watched as it slowly ravished her body, bit by bit.  It was one of the hardest things I've ever gone through, and it's hard to describe that time to anyone who hasn't been there, and even then, everyone's experience is going to be different.  She was my best friend, the mom I'd always wanted, so she wasn't just a MIL, she was everything, so much more, we were very close.  At the time, you put one foot in front of the other and just keep going.  It was hard because there was no normalcy during that time.  We didn't have time together as a family unit (my husband, myself, our two babies), we certainly didn't have "me time".  I was overworked and exhausted, I hosted family that came to visit her, I cleaned both places, did all the laundry, cooking, as well as tending her.  She wanted to be in her home so I'd go down there first thing in the morning and come home 11:00 at night.  It meant we'd have to put our babies down to sleep there, and then take them home and put them to bed.  Our dog was left alone way too much.  What the doctors had said would be for three weeks turned into years.  You can't give yourself much time to think about it because you're too busy living it.  As the time approached and her body was shutting down, one at a time, we knew she had to go, for HER sake, enough was enough and she'd suffered way too much.  I didn't have time to be angry at the cancer, although Lord knows I hated what it'd done to her.  I wanted relief for her.  And when she was gone, the finality hit me big time, that I'd never be able to talk to her again, she was out of my reach.  That's been 29 years ago, but it seems like yesterday.  It's been hard to live my life without her, but you do get used to it, you do adjust to the many changes that come into your life.  Years later, I've lost my parents, my husband, many pets, friends...I've learned that death is part of the life cycle, natural and normal...it just doesn't FEEL natural or normal!

It's only been a short time you've been through this, you may experience all myriads of emotions yet.  Try not to worry about what you are feeling, just let it flow.

[alaskaerin]

Thank you for answering me and for sharing, Kay.  I am sorry for all that you've been through.  You must be incredibly strong to have survived it, and to still be helping others get through similar challenges.  Did your mother in law seek treatment?  Is that why what the doctors said would be three weeks turned into nearly three years?  Was there a point at which you all felt the treatment became more harmful than helpful?

My mom doesn't want any treatment whatsoever.  Based on what little we know about her cancer, that may be the most rational choice because treatment might at best prolong a difficult situation.  But I'm not sure what I think, so I'm not sure how hard I should push her to seek more help.  She would hate to be in a hospital for any length of time; hate for people to treat her like a patient; hate for bills to rack up; hate for all this to happen, and detract from just enjoying her final days, if it would all be in vain.  But I'm worried years from now I will wonder why I didn't push harder.  It's hard to get perspective.

[MartyT]

 

1 hour ago, alaskaerin said:

My mom doesn't want any treatment whatsoever.

My dear, if this is how your mother chooses to manage her terminal illness, then I think one of the finest things you can give to your mother, to yourself and to the rest of your family is the gift of hospice. Have you considered it, and would your mother be open to it? If you're not familiar with hospice and all it has to offer, please do some reading about it, and consider asking your mother's primary care physician about it. See, for example, How Do You Know When to Contact Hospice? The article contains lots of helpful information, including links to additional resources.  ♥

[alaskaerin]

Thank you, Marty.

Our Hospice service cannot help us without a referral from a local doctor, which brings me right back to not wanting to make my mom see a doctor.  My mother had such a referral in her home state from when she was initially diagnosed, but I was told a referral from another state is not sufficient.  In any case, my mother turned the Hospice representative away at the door in her home state and I suspect she probably would try do the same now.  I would still appreciate their help for myself, if I could get it, but I at least have access to counseling.  For the time being, she is capable of eating, walking, sitting down and standing up, dressing herself, operating the TV (sort of) and stepping outside to smoke.  If any of that changes, my hope is that she will then be willing to see a doctor (or suffer a home visit) so that we can get help from Hospice.

[kayc]

My MIL started out doing chemo but it really wouldn't do any good because it was already spread throughout, and it was over 100 mile round trip and made her so sick she opted to discontinue.  No, I think the reason it lasted longer is she literally willed to live.  She had grandchildren and didn't want to miss out on their lives.  

Perhaps as this progresses your mom would reconsider hospice for YOUR sake if not for her own?  It's going to be hard for her to see a doctor if she waits too long.  Hospice was such a help for my mom and for my MIL.

[alaskaerin]

That's amazing, Kay.  It sounds like she was very strong.  Can I ask, did she ever get to the point where she didn't believe she had little time left?  My mom keeps insisting she doesn't have long.  She keeps forecasting her death and then outliving her forecasts.  But it doesn't seem to make her feel more hopeful, probably because she is also declining in health all the while.

I made her a doctor's appointment for Tuesday to get a referral to hospice, but I haven't told her about it yet.  I told her hospice is probably the best way to ensure that she doesn't have to go to the hospital, which is the last thing she wants.  She said she'd think about it.  Every day things are changing so much, her mood and her health.  If on Monday I tell her about the appointment and she doesn't want to go, we're back to square one.  If she agrees, I just hope they can make it quick and easy for her.  

I no longer feel numb about all this--back to feeling horrible again.  What is most awful is that I want her to be as happy as possible at every moment, so if something goes even a little wrong it kills me.  Every moment she has is precious.  

Weeks ago she offered her sky miles to my brother to bring him up for Christmas, if she was still here.  I asked her for her card last night so I could see how many miles she has.  She perked up right away because she knew it meant my brother might visit.  That reaction gutted me, because I'm pretty sure he won't be able to visit for a number of reasons, and because even if he came tomorrow it might be too late.  I had to sit in the car and cry a while. 

[MartyT]

My dear, bear in mind that, although you will need a doctor's referral to get your mother onto hospice care, most hospices have Admission Coordinators who are very skilled at meeting with, presenting and explaining to patients and their families all the benefits that hospice can provide. I so hope, for your sake as well as for your mom's, that she will agree to and accept this precious gift of hospice care. It's the best Christmas present you could give to your family.  ♥

[kayc]

17 hours ago, alaskaerin said:

did she ever get to the point where she didn't believe she had little time left?

She never mentioned that.  I don't think she gave the time left as much thought as getting through this moment, she was in a lot of pain and it was a very arduous struggle.

I don't know about quick, but they make it as easy on the patient and the family as possible.  My mom was on hospice but it wasn't something she could decide, she had advanced dementia and no longer understood anything.  I hope your brother makes the effort to come home for Christmas since it's likely her last one.  He will regret it later if he doesn't because once they're gone, there's no re-dos.

[Annabella]

Hello....I am new here.  I too, at times, feel like I have just accepted things....do I really have a choice?  And...what is worse I just want it all to be over so I can get on with going through the hard parts of actually losing them....and then maybe moving on.  I at times feel selfish that I just want it to be over with so I can move on and maybe get a chance to enjoy some happiness again before I die.  I agree with you, I think these feelings help us in the moment and hopefully in the future.  My heart is with you.  I dont think its sociopathic to be strong so that you can move on and cope in the day.