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Mon Sep 19, 2022, 11:14 AM

Lost my mom on Saturday.

She had horrible lifelong chronic pain from spinal stenosis, COPD, anxiety/depression and stomach problems caused by anxiety and so many pills. A few abortive suicide attempts decades ago due to mental problems - that and dementia runs on her side of the family. She didn't get to dementia, thank goodness I guess.

She spent most of her time in bed for the last several years. We had some happy times, but she had moved in with me about 8 years ago to take care of her before she eventually became immobile. We started as "roomies" and she'd have dinner ready when I got home from my job.

It became hard to get her out of bed to her doctor appointments. I'd reschedule again and again over and over hoping she'd feel better next time. My job did as well as they could accommodating me. I burned through 3 months of FMLA at the beginning of this year until it ran out, then moved to night shift - working at home in my bedroom across from hers - so I'd have freedom to schedule and reschedule doctor appointments.

In between appointments I could get her to go to (she really wanted her pain meds) she went by ambulance to the hospital multiple times for pain/stomach/believing she was having a heart attack or a tumor in her stomach due to the pain. Hospital stabilized her, cured a couple of infections, but found nothing life-threatening. Then she would work to get out of the hospital because she was uncomfortable and wanted to get home to me. Hospital tried sending in-home physical therapy to reduce her pain on top of her pain management (which was just prescribing opioids she wanted and suggesting intra-spinal injections she never wanted.) When she wouldn't participate in home physical therapy, the therapists recommended in-home hospice care. Hospice is a brain-melting gear reversal. Instead of "try to get her to move often, don't give her more pain medication than the limit for the day" it's "keep her resting, keep her comfortable, give her all the morphine every hour, it's better if she's sleeping and it's okay if she doesn't communicate."

My aunt was on in home hospice for two years - no spinal problems, just bad lungs and COPD; she still walked around, watched TV with her family, sneaked cigarettes and an occasional beer. My Mom lasted six days. She said she was was ready to go. Hospice is a horrible concept but a necessary thing. It's hard not to feel guilty but she had expressed she didn't know why she was still alive, had made a few feeble threats and attempts to end her own life. I hid the knife block on top of the fridge. I hid her pain pills under my dresser because once she stole about 15 of her hydrocodone pain pills and took them all thinking it would kill her; it only made her sluggish for a couple of days because she'd built up such a tolerance to pain meds. Even harder was halfway through the six hospice days when she was last most communicative she was determined to finally get up, sit upright in the chair like they wanted her to. Wanted to leave the bedroom and lay on the couch in the living room like I always suggested she could. She wanted out of bed, out of hospice. I tried to move her but she didn't last more than a couple of minutes out of bed. I assured her of course I would call and ask if that was a possibility - that we could end hospice and go back to the way it was...

Dosing her with morphine even when she was not speaking anymore was hard, but I was assured it was the best thing and she would not feel pain. The last few days when she was unverbal and mostly sleeping the most clear response I got from her multiple times was when I asked "Are you in any pain" and she would clearly shake her head. She did all the things. Smiling in her sleep, had a gibberish conversation with surprising inflection with people who wasn't there...

I was up till 3:40am Saturday morning, she sounded like she was drowning, and I rolled her a couple times on her side to spit out mucus. I dosed her with morphine mixed with crushed Ativan (another previously forbidden drug) and another pill that was supposed to help with secretion build up again, got her positioned on her side so she wouldn't gurgle and decided to try and sleep until my 6am alarm to dose her again. I finally heard the alarm at 630 and when I went in she was still warm but there was no oxygen or pulse reading on the oximeter even though it worked on my finger. I must have just missed her. One of her fears was dying alone and I sort of blew it. Potentially by minutes. Nurses assured me if I'd rolled her she might have survived a few more hours but it was inevitable.

I was afraid when I found her there would be this horrible explosion of emotion and crying, but it was more quiet and numb: "Okay. This is happening." The nurse who pronounced her was named Seth and sat with me for for the hour before the funeral home arrived to claim her and did the best job debriefing me on everything that happened. He asked for dental floss and quietly worked to get the ring off her finger that mom declared she wanted me to have but we could never remove as much as we tried which was pretty amazing. I was told hospice is there and can refer me if I need counseling. My cats are grieving - they haven't yet taken away the hospital bed that was installed and the cats are still laying in the same positions they took with Mom on the stripped mattress. They had a weird territorial fight running all over the house snarling at each other.

I'm doing okay I guess. I'm doing things and starting to straighten up the room and the entire house, washing her remaining clothes to donate and the blankets I'll figure out whether to keep but am still waiting for medical supply to collect two oxygen concentrators, four oxygen tanks, the bed, the bedside toilet, the wheelchair she didn't use, the extra walker I kept with the walker she already had and wouldn't use before I can start cleaning in earnest. My cousin whose mom survived two years explained how grief is like a hard candy that lodges in your throat and sometimes you get a bitter taste of it and feel sad. It's not going down for a while, so you're gonna have to keep licking it till it goes down. You can't spit it out, and you can't ignore it for too long or it shatters and you get all the sadness and bitterness at once and that's not optimal.

I still feel guilty. I could have done a better job. Could have been nicer to her a lot of times. Could have cuddled with her at her request more often. It's hard. Life will become easier without having to constantly take her care into account with every decision I make. I don't want to feel happy that this weight is lifted off my shoulders.

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Arrow 35 replies Author Time Post
Reply Lost my mom on Saturday. (Original post)
forgotmylogin Sep 19 OP
Walleye Sep 19 #1
livetohike Sep 19 #2
leftieNanner Sep 19 #3
CentralMass Sep 19 #4
roody Sep 19 #5
brer cat Sep 19 #6
LoisB Sep 19 #7
IbogaProject Sep 19 #8
forgotmylogin Sep 19 #29
IbogaProject Sep 19 #33
MLAA Sep 19 #9
mahina Sep 19 #10
murielm99 Sep 19 #11
littlemissmartypants Sep 19 #12
Tadpole Raisin Sep 19 #13
forgotmylogin Sep 19 #30
Tadpole Raisin Sep 19 #34
SheltieLover Sep 19 #14
Skittles Sep 19 #15
DownriverDem Sep 19 #16
ancianita Sep 19 #17
nuxvomica Sep 19 #18
alwaysinasnit Sep 19 #19
flying_wahini Sep 19 #20
erronis Sep 19 #21
Warpy Sep 19 #22
barbtries Sep 19 #23
forgotmylogin Sep 19 #31
zuul Sep 19 #24
niyad Sep 19 #25
cilla4progress Sep 19 #26
japple Sep 19 #27
Hekate Sep 19 #28
forgotmylogin Sep 19 #32
Karadeniz Sep 19 #35

Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 11:24 AM

1. Please take care of yourself. My mom died over 30 years ago, I still suffer guilt sometimes

Sometimes I think life demands more of people than we are capable of.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 11:33 AM

2. My sympathy on the loss of your Mom. May every good

memory bring you comfort and peace. You did everything right. I lost my Mom four years ago and have twinges of guilt, or how I could have done better. It gets easier with time .

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 11:34 AM

3. You Did A Remarkable Job

Caring for your Mom for all that time in difficult circumstances cannot have been easy.

I lost both of my parents one month apart in 2008 and I think of them every day. The pain and grief will wash over you every now and again. In time, it will be less intense.

Know that the love you gave to your mother was everything you had to give.

Please take care of yourself.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 11:43 AM

4. My condolences on your loss.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 11:47 AM

5. Everyone that cares feels like

they could have done better. You did your best. You will never regret the time you cared for her.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 11:54 AM

6. I'm very sorry for your loss.

It sounds like you did the best you could, and I hope this guilt will pass. None of us are saints with infinite patience. If we look hard enough we will find instances where we could have done something differently, but second guessing yourself leads to needless suffering.

Take care of yourself, grieve when and how you need.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 12:00 PM

7. I am sorry for your loss but do not beat up yourself. Sounds to me as if you did your best under

trying circumstances. That is all any of us can do; the best we can. If we all did everything we "should have" or "could have", we would not be human. We do what we can, when we can, and to the best of our ability - that is all we can ask of ourselves.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 12:20 PM

8. You did well

Having her in with you for Eight Years, and all you went through to care for her. You couldn't be on watch 24 hours per day, you needed to sleep. She didn't die alone, you were with her to the end. You did a good job, don't second guess yourself.
Best wishes for your grief and closing up her affairs to be smooth and not much of a challenge. Watch out her September SS check will get reversed, fyi.

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Response to IbogaProject (Reply #8)

Mon Sep 19, 2022, 02:41 PM

29. The funeral home did warn me about the SS check.

They said they would pay it and then want it back, so that is a great heads up. Thank you.

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Response to forgotmylogin (Reply #29)

Mon Sep 19, 2022, 04:40 PM

33. That needs to be fixed

I can understand subsequent months but the partial month's check should remain. Best wishes for a smooth transition. It's ok to go slow and take time to grieve.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 12:51 PM

9. I think you did a wonderful job. You kept her pain free as she negotiated her own passing.

I am sending you virtual hugs and love. My dad passed in October. We engaged hospice and they ensured he felt no pain at the end. You were with your mom and she knew that and you were diligent in keeping her pain free. We should all be so fortunate to have such a dutiful and conscientious caregiver to protect us as we leave this life. 💗💖. Now it is time to be kind to yourself, doing anything less would be creating pain where none is deserved 💖💗.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 12:52 PM

10. Be gentle with your self. Wishing comfort and peace to you

And to your Mom.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:04 PM

11. I am sorry.

It sound like you did your best in a difficult spot.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:12 PM

12. So sorry ❤️



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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:25 PM

13. Guilty? No my dear!!

What you know is that you did everything you could. You don’t have to worry years from now wondering if you did enough. No solace now I know but trust me your words show you honored her.

Hospice is frustrating for me for many reasons. A big one is that if you have home care services and switch to hospice (staying in the home) you change all your caregivers and even have to change big rental equipment likes beds and wheelchairs (if less than ~ 1 year).

They have programs like ‘bridge to hospice’ but it has that darn word in there and is upsetting to people trying to decide what to do.

Some organizations may set it up better but it’s not universal. A bridge program that doesn’t use the word hospice but that seamlessly switches to hospice when it is right and keeping the same clinicians. I wish they were all like that.

I’m so sorry for your loss!

There is a poem I like from Emily Dickinson:

I never saw a moor,
I never saw the sea;
Yet know I how the heather looks,
And what a wave must be.
I never spoke with God,
Nor visited in heaven;
Yet certain am I of the spot
As if the chart were given.

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Response to Tadpole Raisin (Reply #13)

Mon Sep 19, 2022, 02:46 PM

30. I will say the hospice logistics were on point.

She was already on oxygen for years, and when she switched to hospice they brought in their own concentrator, so I currently have two of those big machines in the living room taking up space. They're scheduled for pickup tomorrow and the next day. She refused a hospital bed at first but the first time she had trouble breathing and I had to make a mountain of pillows to keep her elevated I called and they had the bed here and assembled the same day. Supplies just kept showing up and prescriptions were handed to me on my doorstep, so I lucked out that my support structures were not frustrating in the slightest. That might just be that the process went so quickly I didn't have time to experience any delays or frustrations. I must hand it to Aetna/Medicare and BJC Hospice group that they negotiated me through this entire process with as few logistical bumps as possible.

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Response to forgotmylogin (Reply #30)

Mon Sep 19, 2022, 05:59 PM

34. That's wonderful! You had a good team and that is everything

when you are going through this.

May each day give you more healing as you process the loss of your dear mother!

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:26 PM

14. Deepest condolences

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:27 PM

15. please, please relieve your guilt

you did the best you could and let me tell you, what you did was STELLAR

my sympathy to you

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:28 PM

16. It sounds

like you did the best you could. Once the funeral is over, you need to take care of yourself.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:33 PM

17. So sorry for your loss, forgotmylogin.

Please don't beat yourself up over what you could have done better. One thing that's helped me recover from my husband's death this year is to live my life as he would want me to. Even though I don't know her or you, I'd guess that your mom and you knew that you would both do the best for each other with what you had. That's all any of us can ever expect, right? A lot of love went into these past eight years. You were a loving caretaker unlike any other that she could possibly have had, and that is what matters.

Take care. Grieve and breathe and be good to yourself, and go on as she would be happy to see you doing.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:37 PM

18. End-of-life care is always followed by regret

"I could of done this, or that, etc." There's always something to regret and potential regret is part of the burden you took on, and, for taking on that burden, you are nothing less than a hero. Not everyone commits to that sacrifice like you have. Be kind to yourself. Your mother needed care and you gave it, now offer some to yourself.

Peace to you and your family, and your mother's friends.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:40 PM

19. I, too, had to make the decision about hospice for my mother. There are no easy answers and constant

second-guessing of all decisions made. My mother died eight years ago yesterday, and I still occasionally ask myself if I could have done things better. I have made peace with myself regarding her care. I hope you find peace too, in the near future. Please don't forget to take care of yourself.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:42 PM

20. As a former hospice nurse I must say to you Be KIND to yourself. She wouldn't want it

any other way. You did the best you could and she knew you were there for her.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:42 PM

21. My condolences to you and my sense is that you are a remarkable caretaker, person

It is so difficult to be so responsible for someone as you have been for so long.

Hugs!

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:51 PM

22. Losing your mother is tough

It would have been easier to list what was still OK rather than what ultimately killed my own mother. and we had a love-hate relationship that took a long time to process. However, it can be done. My own mother was responsible for the wiseass I am today, but there are also deep wounds that will never heal and memories that occasionally bubble up like foul marsh gas.

We had "the talk" when she was in her late 70s about whether she'd ever move in with me. She said she'd keep me up at night while she rummaged around, trying to find the meat cleaver. I told her she wouldn't have the energy, she'd be able to taste the arsenic in her soup. When she sank into self pity and asked me why she couldn't just die, I told her god didn't want her and the devil was afraid she'd take over. She got a laugh out of that one. My dad was horrified but said it was the first laugh he'd heard in months.

I don't know anyone who had a Hallmark card fantasy mother, a soppy Irish tenor mother. In addition, the young can't understand the problems old folks face, not until they get old themselves. So it's always a stew of loss, resentment and guilt.

It will get better. I can't say it goes away, but we get used to it over time.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:51 PM

23. i think you're leaning into the grief just the way you should.

consider grief counseling when the shock begins to wear off; it's helped me a lot.

when my mother passed away, my sister and i stayed with her through the night in the hospital. But at about 3am I left. I had a baby to nurse at home and I guess I was a coward too. At 8am my sister called and said "Mom's gone." My brothers had skipped the whole thing and she was the only one with Mom at the moment she died. She'd been dying for a few months and I always felt as if I lost her before I lost her, so that her death was as much a relief as a sadness, because her life ended before it ended.

Try not to beat yourself up. You've nothing to be ashamed of; you did the best you could and I am sure your mother was grateful for you.

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Response to barbtries (Reply #23)

Mon Sep 19, 2022, 02:57 PM

31. I hope so, my cousin was so right about the gobstopper metaphor.

I'm varying between mundane normalcy - it's weird not to have to hurry anywhere - and crying for the weirdest reasons: "I bought this milk when she was alive..." I want to let grief happen as it comes so it doesn't hit me all at once and shatter in my throat like she said.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:52 PM

24. It sounds like you did a great job and I'm sure your mom appreciated all your care and concern.

Please take care of yourself now.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:56 PM

25. PLEASE remember to be kind and gentle and loving with yourself. You have

nothing to feel guilty about. You did absolutely everything you could. Have been the carer for several as they crossed, so I know.

One thing I am noticing in your post is that you seem to have had no respite help. If that is the case, my first statement goes 100 times. You need time to grieve, time to recover, time to heal. The stats for caregivers, especially sole family members, is depressing.

How you deal with the loss is completely up to you. Pay no attention to anybody who tells you how you SHOULD be feeling or acting.

And know that your DU family is here for you. Lean as much as you need.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 01:57 PM

26. My god,

you are a hero!

Hugs.

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 02:05 PM

27. Dear friend, you have no cause to feel guilty. You gave your mother the best care anyone could

have received. She had more problems than she, you, or the medical profession could deal with, and the burden fell on you. Please know that no one dies alone. It sounds as though she was quite ready to leave and you must have realized that at some level. You were (and might still be) operating on autopilot/shock or whatever it is called. After my husband died unexpectedly, I felt very detached and that I was doing things by rote. I think that this is the way the human mind copes with feelings and emotions that are difficult. This will pass.

Please treat yourself kindly. Try to do simple things that bring you joy, things that you haven't been able to do since you began caring for your mother. Might grief counseling help? I wish you a brighter day, every day, until you start to feel whole again.

Peace & Love,
japple

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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 02:17 PM

28. Peace to you. Know that she is at rest and pain-free at last. Be gentle & kind to yourself.





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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 03:01 PM

32. Thank you to everyone who has replied!

I kind of sought out this corner of DU just to type out my feelings randomly imagining that this group wasn't very active and was surprised at all the supportive responses when I checked back in.

I have been aching to talk about all this but I don't feel like I can as extensively with my friends and remaining relatives because it's too much and I don't want to chew their ears off. Nobody needs to wallow in this with me completely.

So thank you, everyone, again for listening and responding!



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Response to forgotmylogin (Original post)

Mon Sep 19, 2022, 06:32 PM

35. I hope you quickly realize that none of us is perfect... it's being human... and you'll toss the

guilt. Actually, you went above and beyond. Your mom is much happier where she is now.

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