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Ilsa

(61,694 posts)
Fri Nov 4, 2022, 05:27 PM Nov 2022

I will never be an elder-caregiver again.

My MIL was total care the last couple of months of her life. I hired a little help to care for her during the week, but most of her care still fell on me. She finally passed peacefully, using morphine drops for perceived discomfort at home.

I won't have to worry about caring for my husband as he ages because because he died a few weeks before his mother. There is no doubt in my mind that this stress and other chronic stressors contributed to his demise. My sweetheart is gone. My children's father is gone. I won't have a partner in retirement. I had to make his mom's funeral arrangements. As I told the social worker, I feel fucked over in addition to being sad, depressed, tired, and angry.

BTW, I will be deleting my thread in a few days just because I don't want family accidentally finding it.

And that, my friends, has been my adventure in elder-caregiving.

149 replies = new reply since forum marked as read
Highlight: NoneDon't highlight anything 5 newestHighlight 5 most recent replies
I will never be an elder-caregiver again. (Original Post) Ilsa Nov 2022 OP
It's very hard. we can do it Nov 2022 #1
I can't even grieve her because I'm too filled with Ilsa Nov 2022 #2
Hugs to you. we can do it Nov 2022 #5
TY. nt Ilsa Nov 2022 #12
I am so sad for you. redwitch Nov 2022 #3
TY. Life requires courage. nt Ilsa Nov 2022 #13
Sending you hugs. MLAA Nov 2022 #4
My MIL's dementia was so bad, she'd scream over being Ilsa Nov 2022 #8
Holy moly! Full time care giving is exhausting, then add the dementia. MLAA Nov 2022 #10
I have an adult son with a severe disability that I am taking care of. Ilsa Nov 2022 #11
Please try and do something nice for yourself soon, even if it is a little thing. MLAA Nov 2022 #19
I'm going to try and wash my hair tonight, get to Ilsa Nov 2022 #20
Sounds like a great plan! A few extra minutes in a hot shower should feel good! MLAA Nov 2022 #21
Good you need to do something for you. Hugs to you Ilsa. You are a better person then me. I couldn't debm55 Nov 2022 #26
The bazaar is a True Blue American Nov 2022 #38
My heart breaks for you questionseverything Nov 2022 #39
TY. Your empathy means a lot. nt Ilsa Nov 2022 #14
I'm so sorry you had to go through all that. Hugs for you dear lady. Srkdqltr Nov 2022 #6
TY. The virtual hugs help. nt Ilsa Nov 2022 #15
What a tragedy, and a very stressful time. brer cat Nov 2022 #7
My heart aches sometimes. TY. nt Ilsa Nov 2022 #16
love and light to you stage left Nov 2022 #36
Just sending you some hugs,,, KarenS Nov 2022 #9
TY for understanding. nt Ilsa Nov 2022 #17
Be very kind to yourself Easterncedar Nov 2022 #18
TY. It feels better that so many people care. nt Ilsa Nov 2022 #43
The title of your post says it all, Easterncedar. calimary Nov 2022 #83
I'm worried about my two pets. Ilsa Nov 2022 #90
Do you think they would take to a new wee one? calimary Nov 2022 #99
No, the male is jealous of other animals getting my attention. Ilsa Nov 2022 #120
Are you a member of a care-givers group in your area? erronis Nov 2022 #22
We used respite, but didn't get any the last Ilsa Nov 2022 #41
I've never had the time to get away. nt Ilsa Nov 2022 #107
For you now, some rest. A lot of rest. Wild blueberry Nov 2022 #23
Thank you! nt Ilsa Nov 2022 #124
So very sorry on the loss of your husband. Fla Dem Nov 2022 #24
I miss him so much. TY. nt Ilsa Nov 2022 #125
I'm sorry for your losses cate94 Nov 2022 #25
Thank you. nt Ilsa Nov 2022 #126
Hang in there sister. You've had a rough road. As some above have suggested, panader0 Nov 2022 #27
I don't know how you did it. BigmanPigman Nov 2022 #28
I don't either. I didn't like her very much, but none Ilsa Nov 2022 #49
Your heart is so big! BigmanPigman Nov 2022 #59
It never seems to go like we hope. 1WorldHope Nov 2022 #29
I plan on offing myself it it looks like Ilsa Nov 2022 #47
We just don't know until we get there is my guess. 1WorldHope Nov 2022 #96
My heart goes out to you. Hope22 Nov 2022 #30
Thank you so much. I'm actually feeling better Ilsa Nov 2022 #122
Soak up the love. Hope22 Nov 2022 #142
I am so sorry. Jay25 Nov 2022 #31
Your kindness in replying makes me feel better for myself & the world. nt Ilsa Nov 2022 #121
So sorry. Wishing you happiness. You deserve it. Joinfortmill Nov 2022 #32
Thank you so much. nt Ilsa Nov 2022 #123
I don't blame you for feeling used and abandoned Warpy Nov 2022 #33
Hubby spent a year getting his mother VA services. The first check Ilsa Nov 2022 #48
Ilsa Hekate Nov 2022 #34
Back atcha! (Thanks) nt Ilsa Nov 2022 #127
I am so sorry, Ilsa. stage left Nov 2022 #35
Oh. mercy. Ilsa Nov 2022 #128
I miss him every day. stage left Nov 2022 #145
Your job is done, take care of yourself now. TNNurse Nov 2022 #37
Thank you. You know, the "your job is done" Ilsa Nov 2022 #129
Take care of yourself, get outside before the weather gets colder. TNNurse Nov 2022 #143
I'm so very sorry. Yorkie Mom Nov 2022 #40
The feelings of death around have been horrible. Ilsa Nov 2022 #130
Please give yourself love and credit for being there for your loved ones. Shoeless Louis Nov 2022 #42
Dayum, you're sweet! Ilsa Nov 2022 #51
Oh my goodness SallyHemmings Nov 2022 #44
Thank you for your kind words. nt Ilsa Nov 2022 #131
I'm so sorry. UniqueUserName Nov 2022 #45
Thank you for the link. I might do some reading, even if I Ilsa Nov 2022 #132
So much sadness all coming together. Take care of yourself. I am so sorry. Scrivener7 Nov 2022 #46
Death hovered over my household for two weeks. Ilsa Nov 2022 #53
Bathing, when you are caring for the old and the dying, is often a luxury. Scrivener7 Nov 2022 #55
you're so kind and thoughtful. nt Ilsa Nov 2022 #60
Keep us posted how you get along. Scrivener7 Nov 2022 #70
I don't blame you CountAllVotes Nov 2022 #50
No one else would/could take her. I wasn't Ilsa Nov 2022 #54
You did the best you could! CountAllVotes Nov 2022 #85
I am so sorry; how stressful these issues have been. I am sad for you. peacebuzzard Nov 2022 #52
That's awful, too much! Yeah, I have some PTSD from start to finish. nt Ilsa Nov 2022 #58
and like you, no one helped me, peacebuzzard Nov 2022 #62
I am so sorry. murielm99 Nov 2022 #56
Thank you so much. nt Ilsa Nov 2022 #133
My late wife was a quadriplegic during our 27-year marriage. I was her primary caregiver. Girard442 Nov 2022 #57
You're a mensch as well. Toda raba. Ilsa Nov 2022 #63
Ilsa louslobbs Nov 2022 #61
TY🙏 nt Ilsa Nov 2022 #64
You make me realize how lucky I was. planetc Nov 2022 #65
I'm so sorry. area51 Nov 2022 #66
My heart goes out to you, Ilsa. frogmarch Nov 2022 #67
I found my husband's body. Ilsa Nov 2022 #68
Please get professional help, Ilsa. frogmarch Nov 2022 #73
I am. I'm under the care of a psychiatrist, Ilsa Nov 2022 #74
I am glad to hear that. I'll be thinking of you frogmarch Nov 2022 #81
You made the world more kind and loving, something we should Ilsa Nov 2022 #72
its not like the movies dembotoz Nov 2022 #69
Those are good points. Ilsa Nov 2022 #71
when you run away do watch your spending. dembotoz Nov 2022 #77
You have every right to feel that way. It is exhausting and often thankless. But you did make others Evolve Dammit Nov 2022 #75
Thank you for your kind words. Ilsa Nov 2022 #134
I believe you have. Evolve Dammit Nov 2022 #140
Oh Ilsa. I'm so sorry for all the loss you have weathered. MontanaMama Nov 2022 #76
Hugs to you, too. Brutal is right. Thank you. nt Ilsa Nov 2022 #135
Hugs to you, my friend. May you find peace and healing. So very sorry for niyad Nov 2022 #78
I'll never use my license again, or Ilsa Nov 2022 #136
Took care of my mother 24/7 for 6 months+ NoMoreRepugs Nov 2022 #79
Thank you. And "good on you" for helping your mom. nt Ilsa Nov 2022 #137
Sharing my heart..... WVGal1963 Nov 2022 #80
Thank you so much. Your empathy Ilsa Nov 2022 #138
I'm 62 and lost my parents long ago. I've always been jealous of those that had their parents around brewens Nov 2022 #82
I hear you. Neither set of parents had much to leave Ilsa Nov 2022 #139
You are everything good about people. My heart is broken for you. Don't be hard on yourself. onecaliberal Nov 2022 #84
Thank you so much. I'm planning Ilsa Nov 2022 #141
Been there, done that - 2x Lithos Nov 2022 #86
TY. Amazing that you could do it twice. Ilsa Nov 2022 #87
LOL Lithos Nov 2022 #98
Reading thru this thread has given me a whole new outlook Deuxcents Nov 2022 #88
TY. nt Ilsa Nov 2022 #89
@Ilsa raising2moredems Nov 2022 #91
TY for the kind words. nt Ilsa Nov 2022 #92
I've been waiting all evening to reply to this.... Trueblue Texan Nov 2022 #93
thank you. nt Ilsa Nov 2022 #104
You are not alone. Simeon Salus Nov 2022 #94
This message was self-deleted by its author Rocknation Nov 2022 #95
In the words of the venerable Bette Davis... pazzyanne Nov 2022 #97
Lisa, I am so sorry. You've had so much loss. AllyCat Nov 2022 #100
I'm so sorry. SleeplessinSoCal Nov 2022 #101
thank you. nt Ilsa Nov 2022 #105
I'm so sorry for your loss LittleGirl Nov 2022 #102
I'm so sorry Ilsa Nov 2022 #106
I'm sorry! It's indeed VERY difficult! Buckeye_Democrat Nov 2022 #103
I don't believe in 'heaven' and 'hell', but there has GOT to be some special reward for caregivers 70sEraVet Nov 2022 #108
You are an amazing woman, llsa. sueh Nov 2022 #109
Thank you! nt Ilsa Nov 2022 #144
You were there for them Marthe48 Nov 2022 #110
I have cared for my own father, my mother, and my husband, the last 5 years of his life appleannie1 Nov 2022 #111
I took care of my MIL precisely for that reason. Ilsa Nov 2022 #113
I am soo sorry. appleannie1 Nov 2022 #148
Thank you for your king words. Ilsa Nov 2022 #149
There is nothing to be ashamed about. You wrote it beautifully. LiberalFighter Nov 2022 #112
My deepest sympathies. CrispyQ Nov 2022 #114
I echo these comments. cilla4progress Nov 2022 #115
Such kind comments and good wishes. Thank you. BTW, Ilsa Nov 2022 #119
Just want to join in with others' wishes: snot Nov 2022 #116
I missed this post yesterday, but saw your post about your grieving dogs... hlthe2b Nov 2022 #117
Thank you. Weather permitting, I intend to take them out tomorrow. nt Ilsa Nov 2022 #118
This message was self-deleted by its author Rocknation Nov 2022 #146
We didn't even ATTEMPT "do-it-yourself" end-of-life home care Rocknation Nov 2022 #147

MLAA

(17,282 posts)
4. Sending you hugs.
Fri Nov 4, 2022, 05:34 PM
Nov 2022

I can understand a bit of what you have/are going through. Though, I’m not comparing y situation to yours which is much more difficult and painful. My husband is nearly 25 years older. In the last few years his memory has declined considerably to the extent that I don’t like to leave him alone for more than an hour or two. The silver lining is that he is as kind, sweet and funny as ever. It’s just hard always repeating things and finding things he has put away in the oddest places. But the hardest thing by far is that I know longer have a partner to discuss decisions with and at some part will have no partner at all.

Sending you

Ilsa

(61,694 posts)
8. My MIL's dementia was so bad, she'd scream over being
Fri Nov 4, 2022, 05:37 PM
Nov 2022

given a bed bath, getting her disposable panty changed. (Who are we kidding? It was a diaper.) She became paranoid, uncooperative, combative, etc. The worst of her personality was what we were left with.

MLAA

(17,282 posts)
10. Holy moly! Full time care giving is exhausting, then add the dementia.
Fri Nov 4, 2022, 05:41 PM
Nov 2022

You were probably sleep deprived and constantly stressed. I’ve been sleep deprived for a few weeks or month when husband had heart surgery and then hip surgery but did not have to face the challenges of dementia.

You are a 😇

Ilsa

(61,694 posts)
11. I have an adult son with a severe disability that I am taking care of.
Fri Nov 4, 2022, 05:46 PM
Nov 2022

I'm just trying to stay alive until I can no longer care for him.

MLAA

(17,282 posts)
19. Please try and do something nice for yourself soon, even if it is a little thing.
Fri Nov 4, 2022, 05:51 PM
Nov 2022

You deserve it and need it to keep going.

Ilsa Ilsa

Ilsa

(61,694 posts)
20. I'm going to try and wash my hair tonight, get to
Fri Nov 4, 2022, 05:53 PM
Nov 2022

bed earlier than usual, and go to a church bizaar in the morning.

debm55

(25,162 posts)
26. Good you need to do something for you. Hugs to you Ilsa. You are a better person then me. I couldn't
Fri Nov 4, 2022, 06:02 PM
Nov 2022

handle all you have been through. You are a brave and strong woman.

True Blue American

(17,984 posts)
38. The bazaar is a
Fri Nov 4, 2022, 06:37 PM
Nov 2022

Wonderful idea. My heart hurts for you because I know how you feel. Being with people you know helps so much. Bless you!

questionseverything

(9,651 posts)
39. My heart breaks for you
Fri Nov 4, 2022, 06:44 PM
Nov 2022

Are you able to hire someone once in a while so you can get a break?

Blessed be the helpers ( you) ❤️

brer cat

(24,560 posts)
7. What a tragedy, and a very stressful time.
Fri Nov 4, 2022, 05:37 PM
Nov 2022

I can't imagine the feeling of loss. Try and take care of yourself now.

Easterncedar

(2,296 posts)
18. Be very kind to yourself
Fri Nov 4, 2022, 05:51 PM
Nov 2022

I know something of this, too, although your ordeal is among the worst I’ve heard of. I’m so sorry for all you’ve lost and for all you have suffered and are suffering still.

To the extent you can, please rest. Don’t ask anything of yourself, be gentle to yourself. Just be. Howl if you want to.

Love, peace and hugs.

calimary

(81,220 posts)
83. The title of your post says it all, Easterncedar.
Fri Nov 4, 2022, 08:52 PM
Nov 2022

Be very kind to yourself. You, and our Ilsa, too.

You’ve been through so much. It’s depleting. It’s depleting of your energy, your fortitude, your patience, and your sense of self. When you focus all your attention and effort on someone else’s needs, especially needs as grave as in this case, there’s a huge cost. It leaves you feeling emptied out. Like you’ve given your all and there’s nothing left to sustain YOU.

Ilsa, you need time. YOU need time. Time to heal and restore. YOU need recovery time. You need time, sleep, relaxation, good food, treats, rest, and self-care. You need walks in nature. Good books. Good mindless TV. The History channel’s “Universe” series can REALLY take you away, past Earth orbit, past Galileo and other ancient thinkers and discoverers. You need friends and pets if you have ‘em, pals to walk with, have hot tea or cocoa or great coffee in some gossipy little coffee place with an atmosphere of congeniality. You need friends and crafts and play and release. You need friends to walk with and stretch with and get a massage with and maybe do meditations with. You need chocolate and

You need to be good and kind and gentle and loving TO YOURSELF. Maybe a pet if you don’t have one already? Maybe a getaway for a change of scenery and/or routine? What will feed your spirit? What sounds like it might be healing for you? Someone familiar and trusted who you feel comfortable with, who you can talk to? There are groups that collect around shared mourning, loss, pain, fading health. And many of them don’t require any entry fee.

What do YOU want to do now? Maybe make a list? List some practical ideas and some totally silly or outrageous or improbable. Churches have groups like that, including the more or less nondenominational ones.

Be with people, or spend time in solo reassessment. Do what’s going to feed and refill and restore. And try not to have any preconceptions about how long it’s going to take. Do not burden yourself with any “should’s” or “ought to’s” or “why aren’t I over this by now’s”. It’s just gonna take whatever time it takes.

And there’s always HERE. At DU. I want to share my own experience after my mom died after what seemed like a never-ending illness. I was sitting alone, sorta aimlessly strumming through DU late that night. And I posted a brief comment about it. Didn’t expect anything. By the time I finished my post, there suddenly popped up a response. And then another. And then several more. And then even more. It was astounding! Before I realized it, there were 200-and-some posts - from familiar DUers and others I’d never heard of before. EVERY one of them offered comfort, solace, sharing of burden and pain, sympathy and empathy and love and caring. It was so healing, I still can’t describe fully what it meant to me, even after all these years, and she passed on November 1st, 2006.

A thread like this will let you know you are not alone, and that you are not walking or struggling your way along this path alone, and that you’re loved and cared about.


Ilsa

(61,694 posts)
90. I'm worried about my two pets.
Fri Nov 4, 2022, 11:29 PM
Nov 2022

My dogs are not eating well. They miss him. One won't hardly leave my bedroom. The other has been moping around, barely eating dog food.

Oh, yes, thank you, all of those ideas of "treats" appeal to me

calimary

(81,220 posts)
99. Do you think they would take to a new wee one?
Sat Nov 5, 2022, 01:49 AM
Nov 2022

Just a thought. Our surviving cat turned out to be remarkably loving to the later-arrival kittens. I realize I’m talking cats here and you’re on dogs. But the way the older one adapted almost instantly to the two new little litter-mates. Started giving them baths whenever they’d approach him, which was often. That grooming behavior continues to this day.

It was a real surprise! Not what we were expecting! But no screaching or cat fights, and they sleep together or very close to each other.

Ilsa

(61,694 posts)
120. No, the male is jealous of other animals getting my attention.
Sat Nov 5, 2022, 07:10 PM
Nov 2022

He's neutered but he has security issues. Both are rescues.

erronis

(15,241 posts)
22. Are you a member of a care-givers group in your area?
Fri Nov 4, 2022, 05:59 PM
Nov 2022

I work a bit with a Council on Aging and have learned about lots of support groups.

Just having others to talk to - whether close by or around the world can help.

Also there may be some groups that help match caregivers with each other to provide respite.

I just learned that Medicare offers respite funding. The hard thing is finding others that can provide care.

Ilsa

(61,694 posts)
41. We used respite, but didn't get any the last
Fri Nov 4, 2022, 06:55 PM
Nov 2022

three months until my spouse died. The hospice agency found found emergency respite, but she had to bounce back home. It was all very freaky and unnerving.

Fla Dem

(23,652 posts)
24. So very sorry on the loss of your husband.
Fri Nov 4, 2022, 06:01 PM
Nov 2022

Focus on healing yourself. I hope for you, as life goes on, there will be more sunshine than clouds.

panader0

(25,816 posts)
27. Hang in there sister. You've had a rough road. As some above have suggested,
Fri Nov 4, 2022, 06:03 PM
Nov 2022

take time for yourself, and enjoy life without the stress you've had. All the best.

Ilsa

(61,694 posts)
49. I don't either. I didn't like her very much, but none
Fri Nov 4, 2022, 07:14 PM
Nov 2022

of her other kids would or could participate in her care. I guess I did it because I love my husband.

BigmanPigman

(51,584 posts)
59. Your heart is so big!
Fri Nov 4, 2022, 07:32 PM
Nov 2022

I sincerely doubt I would be able to do as you did. I am in awe. Karma will reward you.

1WorldHope

(684 posts)
29. It never seems to go like we hope.
Fri Nov 4, 2022, 06:04 PM
Nov 2022

I'm glad you are in touch with your feelings. I've been in human services for years. A lot of hope was placed on waiver services. When it was my family member's time to need these services there was nothing I could do to make it happen. Same with my neighbor lady. We lived next door for 30 years. She fell, went to rehab, came home, fell again of course. I tried so hard to help the family find those kinds of supports. They sent her to a care facility after trying really hard to keep her home. She caught Covid twice and died before her 95th birthday. I was always confident my daughter would be able to care for me if needed someday. I've lost all hope that it can be possible for any of us. Warehouses of death are in all our futures if we don't have big money to hire people. If those people could even be found. I'm sure that was not helpful at all. Sorry. You are in very good company so don't stop talking. Thanks for sharing.

1WorldHope

(684 posts)
96. We just don't know until we get there is my guess.
Sat Nov 5, 2022, 12:18 AM
Nov 2022

The right drugs are the key. I wish we never had to die so I don't think I could do it myself. I can see drifting off in a morphine haze when I can't do anything else. But I figure you never know who will cross your path on that journey. Maybe, we will touch a stranger who comes to the hardest job in the world for minimal pay everyday and give them a little love in our last hours. Or it could be way fucking worse, so don't listen to me. 🎶What a strange trip it's been 🎶

Hope22

(1,818 posts)
30. My heart goes out to you.
Fri Nov 4, 2022, 06:07 PM
Nov 2022

Tears for you as you go through these most difficult times. Caregiving is lonely, demanding and exhausting. Be easy with yourself. I’m so sorry for your pain and loss. I’m sending love to you. 💗🙏

Ilsa

(61,694 posts)
122. Thank you so much. I'm actually feeling better
Sat Nov 5, 2022, 07:19 PM
Nov 2022

today than when I posted. The good vibes sent my way help.

Hope22

(1,818 posts)
142. Soak up the love.
Sat Nov 5, 2022, 08:53 PM
Nov 2022

This will come in waves but remember that you are surrounded by love! 💗💗🙏

Warpy

(111,245 posts)
33. I don't blame you for feeling used and abandoned
Fri Nov 4, 2022, 06:19 PM
Nov 2022

because it's really part of the job unless you've been trained to do it. No one cares about caregivers because they are mostly women.

Caregivers have to put everything they have into caregiving and friends and family move on without them. It's an incredibly isolating experience.

I don't know where you live, but if it's a city, call elder services to see if they have a caregivers' group. Talking some of this stuff out with people who understand can help. So can listening and realizing you're not alone in this.

Now is the time to take care of yourself. You did your bit and more, you get to say no now.

Ilsa

(61,694 posts)
48. Hubby spent a year getting his mother VA services. The first check
Fri Nov 4, 2022, 07:12 PM
Nov 2022

arrived sfter she died. They'll want it back, so I'm not withdrawing it. But they'll still owe about 11-12 months of catchup payments.

stage left

(2,961 posts)
145. I miss him every day.
Sun Nov 6, 2022, 07:03 PM
Nov 2022

You have a double dose of grief and you're also exhausted from fighting the caregiver fight. That can be so lonely. My heart goes out to you. May you come to smile through your tears when remembering your love.

Ilsa

(61,694 posts)
129. Thank you. You know, the "your job is done"
Sat Nov 5, 2022, 07:26 PM
Nov 2022

aspect of this has left me feeling like "what do I do now?"

Ilsa

(61,694 posts)
130. The feelings of death around have been horrible.
Sat Nov 5, 2022, 07:29 PM
Nov 2022

I was really feeling the "thinness of the veil" all through October.

Shoeless Louis

(73 posts)
42. Please give yourself love and credit for being there for your loved ones.
Fri Nov 4, 2022, 06:56 PM
Nov 2022

I can’t take away the pain, but I hope you can appreciate how much of a difference you made. I have had a very similar experience and the emotional fatigue was incredible, and maybe some guilt for not being able to do more. You need to choose gratitude for what you accomplished, above all else.

I don’t know you but I love you, and there’s not a damn thing you can do about it. ?️

UniqueUserName

(178 posts)
45. I'm so sorry.
Fri Nov 4, 2022, 07:08 PM
Nov 2022

I lost my husband in March 2019. Reddit has a subgroup for widows and widowers. They are very caring and empathetic. Sometimes it's nice to talk to someone who knows what it's like.

https://www.reddit.com/r/widowers/

Ilsa

(61,694 posts)
53. Death hovered over my household for two weeks.
Fri Nov 4, 2022, 07:18 PM
Nov 2022

There were days when I thought I could smell it, but it was just me, forgetting to bathe. (Bathing is overrated.)

Scrivener7

(50,949 posts)
55. Bathing, when you are caring for the old and the dying, is often a luxury.
Fri Nov 4, 2022, 07:23 PM
Nov 2022

No job is harder.

Have a long hot bath whenever you want now. I wish it could do something for you. My heart goes out to you.

CountAllVotes

(20,868 posts)
50. I don't blame you
Fri Nov 4, 2022, 07:15 PM
Nov 2022

Not one bit.

I've been there too recently.

Such a thankless task to get stuck with like it or not.

Never again.

Never!

Hang-in there and know you are not alone!





Ilsa

(61,694 posts)
54. No one else would/could take her. I wasn't
Fri Nov 4, 2022, 07:20 PM
Nov 2022

going to let my husband's mom try to navigate the end of her life on her own.

peacebuzzard

(5,170 posts)
52. I am so sorry; how stressful these issues have been. I am sad for you.
Fri Nov 4, 2022, 07:18 PM
Nov 2022

It is backbreaking and very lonely to go through that. I had a similar experience decades ago with my grandma. My mother predeceased her mom (mom died so young ) and I was left with trying to help with her elderly mom and an elderly great aunt. Until this day I suffer anxiety from that very tough time. I hope you find recovery from this and return to a peaceful period. I am sorry for your losses.

peacebuzzard

(5,170 posts)
62. and like you, no one helped me,
Fri Nov 4, 2022, 07:36 PM
Nov 2022

but I was certainly blamed and shamed for the decisions I had to make.

Girard442

(6,070 posts)
57. My late wife was a quadriplegic during our 27-year marriage. I was her primary caregiver.
Fri Nov 4, 2022, 07:29 PM
Nov 2022

I married her mindfully and would do it all over again, but no one has to explain to you that care-giving is not a HallMark Hall of Fame movie.

She passed from a progressive stroke after several weeks in hospital. Progressive strokes are brutal. At first the patient rallies and seems to be on the way to a full recovery, but then with each event, slips further and further downhill.

I sought psychiatric care immediately after she passed because I knew from hard experience, that having been in crisis mode, running on adrenaline for several weeks and then suddenly nothing is happening anymore would lead to a total crash. It would have without the crutch of antidepressants.

I was able to keep putting one foot in front of the other for a couple of months and was finally able to venture out into the world again. Not to date, but just to be among people.

Everything you say sounds so familiar. On my darkest days, I'd think about my ancestors, in an unbroken chain stretching way back into prehistory and beyond. If they managed to get through times like this, maybe I could too.

Things will get better. That's not a pious platitude. It's just true.

L'Chaim

Ilsa

(61,694 posts)
63. You're a mensch as well. Toda raba.
Fri Nov 4, 2022, 07:37 PM
Nov 2022

I believe it'll get better. I'm having issues starting to make it happen. I guess I'm just too tired and depressed.

planetc

(7,806 posts)
65. You make me realize how lucky I was.
Fri Nov 4, 2022, 07:42 PM
Nov 2022

My mother and I shared a home for some years before she had to go to a nursing home. But my mom was herself until the end. The nurses said she had some dementia, and her memory was a piece of lace, but she was herself with flickering memories. To do what you did for someone who struggled and screamed was an extended period of service above and beyond the call of duty. Of course, we do not give medals for this sort of thing, but if we did, I would be nominating you for a Medal of Honor. There may be some grief support groups in your neighborhood. The local hospice had them lined up. And they might be a help. But for the moment, try to take as good care of yourself as you did of them. You can be sure you deserve your care as much as they did.

frogmarch

(12,153 posts)
67. My heart goes out to you, Ilsa.
Fri Nov 4, 2022, 07:44 PM
Nov 2022

I took care of my husband of 55 years in the last 4 years of his life. He had COPD and diabetes, and although a nurse stopped in a few times a week to collect the information I'd recorded regarding his vital signs and so forth to give to his doctor, I was basically his sole caregiver.

During his last conscious moments, as I held him in my arms, he looked up at me and whispered, "Thank you."

I wouldn't want to relive those years, but if I had to do something like that for someone else, I would. It comforts me to know I helped.

Ilsa

(61,694 posts)
68. I found my husband's body.
Fri Nov 4, 2022, 07:47 PM
Nov 2022

No "goodbye." Lividity and rigor set in. Yeah, I'm traumatized by it all. My brain is also in denial.

frogmarch

(12,153 posts)
73. Please get professional help, Ilsa.
Fri Nov 4, 2022, 07:55 PM
Nov 2022

Your doctor should be able to recommend someone. Please do it now.

Ilsa

(61,694 posts)
74. I am. I'm under the care of a psychiatrist,
Fri Nov 4, 2022, 07:59 PM
Nov 2022

a grief counselor from hospice, and a minister from my church.

frogmarch

(12,153 posts)
81. I am glad to hear that. I'll be thinking of you
Fri Nov 4, 2022, 08:46 PM
Nov 2022

and hoping everything turns around for you soon. What you went through is almost unimaginable to me. I am so glad you've found people who can help you through it.

dembotoz

(16,799 posts)
69. its not like the movies
Fri Nov 4, 2022, 07:49 PM
Nov 2022

Death does fuck people over. You are right to feel that way

I went thru similar but not the same. What worked for me a bit, and only a bit is to find something you learned thru this.
I learned i am stronger than i thought. I got thru it because i had to. In my case, when my wife died after a long illness, i still had my toddler son i had to raise.
I learned who i could depend on and who was all talk and no deed. Important lessons.
you will get thru this because you have no choice.

Take care of yourself.

Ilsa

(61,694 posts)
71. Those are good points.
Fri Nov 4, 2022, 07:53 PM
Nov 2022

I already know who in my family that cares and who didn't give a shit.

I still have purpose, work to do in my life. Then I want to run away on a Viking cruise along the Danube or something like that. (No open seas, please.)

dembotoz

(16,799 posts)
77. when you run away do watch your spending.
Fri Nov 4, 2022, 08:14 PM
Nov 2022

grief spending is real.

i bought some dumb stuff, did some dumb stuff.
But do not exceed your budget.

Please be careful.......
You are now in the club that nobody wants to join...widows and widowers.
You will find that you attract them and you will hear stories.....I know i did.
People doing stupid stuff in the name of grief...Do not become a story....

good luck

Evolve Dammit

(16,723 posts)
75. You have every right to feel that way. It is exhausting and often thankless. But you did make others
Fri Nov 4, 2022, 08:04 PM
Nov 2022

more comfortable in a time of need. Don't forget the goodness and self-sacrifice that allowed them to live as best as they could with your support. My Mom's friend told me once; "you're going to have a spot in heaven."
Take Care Ilsa.

MontanaMama

(23,307 posts)
76. Oh Ilsa. I'm so sorry for all the loss you have weathered.
Fri Nov 4, 2022, 08:10 PM
Nov 2022

I took care of my parents through my mom’s cancer and my dad’s dementia. It is fucking brutal…no other way to describe it. Dementia eats everyone it touches alive. I wish I could hug you.

niyad

(113,263 posts)
78. Hugs to you, my friend. May you find peace and healing. So very sorry for
Fri Nov 4, 2022, 08:16 PM
Nov 2022

the loss of your beloved husband, and your MiL. (I just saw where you found your husbnd's body. Holy . . ..extra strong hugs, love and light headed your way!)

Caregiving, whether profession or family, is exhausting, soul-draining work. Please, please, be very gentle and kind with yourself. Take all the time you need to heal. Your DU family is here for you. Lean as much as you need.

I did caregiving for many years, both family and professionally. Never again. People ask me when I will go back to it. I ask them if they think I am nuts.

Ilsa

(61,694 posts)
136. I'll never use my license again, or
Sat Nov 5, 2022, 07:36 PM
Nov 2022

offer to care for anyone again. We would be crazy to do it.

NoMoreRepugs

(9,413 posts)
79. Took care of my mother 24/7 for 6 months+
Fri Nov 4, 2022, 08:19 PM
Nov 2022

and it was both stressful and rewarding. The hallucinations on drugs and slight dementia took more of a toll on me than I realized. You are not alone - time will help.

WVGal1963

(145 posts)
80. Sharing my heart.....
Fri Nov 4, 2022, 08:26 PM
Nov 2022

……with all that I can. My sorrow for you is real. Thank you for sharing this - - sniff - - I can truly feel your loss.

brewens

(13,574 posts)
82. I'm 62 and lost my parents long ago. I've always been jealous of those that had their parents around
Fri Nov 4, 2022, 08:46 PM
Nov 2022

but it's getting pretty rough now. My friends have been losing their parents for some time now. One thing that really sucks is that in a lot of cases, nothing was left of their estate. No inheritance. The system took it all.

Same kind of people in the same situation a couple decades ago would have at least had something to divvy up among the kids, as their parents intended. That was the only break a lot of working-class people ever got and it helped them to own their own homes eventually.

Ilsa

(61,694 posts)
139. I hear you. Neither set of parents had much to leave
Sat Nov 5, 2022, 07:42 PM
Nov 2022

their kids. My MIL would have had more, and she always said, "I want what's mine," in dealing with the VA, but she never bothered to get it for herself.

onecaliberal

(32,826 posts)
84. You are everything good about people. My heart is broken for you. Don't be hard on yourself.
Fri Nov 4, 2022, 09:23 PM
Nov 2022

Healing vibes.

Lithos

(26,403 posts)
86. Been there, done that - 2x
Fri Nov 4, 2022, 10:20 PM
Nov 2022

FIL and my dad.

Not the shirt I would have liked to have bought - but I have it nonetheless.

I know the situation is different, but you have my condolences and empathy. Please find the time to take care of yourself.

Ilsa

(61,694 posts)
87. TY. Amazing that you could do it twice.
Fri Nov 4, 2022, 11:14 PM
Nov 2022

I hope you have a huge selection of angel wings awaiting you!

Lithos

(26,403 posts)
98. LOL
Sat Nov 5, 2022, 12:55 AM
Nov 2022

Thank you.

I ended up in this weird focus zone. Can't explain it - but it's definitely a form of tunnel vision with a ton of delayed feelings.

While it was years ago - things just crop up now and again. This is why I said to move forward - the stresses and fractures will never leave me. Some things worked out for the best, some things did not - everything being very much situational.

Look, feel free to DM me anytime. Vent, scream, celebrate - whatever. Just know - when I do look forward I have found much joy and know my life had far more purpose.

Deuxcents

(16,190 posts)
88. Reading thru this thread has given me a whole new outlook
Fri Nov 4, 2022, 11:20 PM
Nov 2022

On so many in this DU family. Isla, you n other caregivers who’ve reached out are Angels. I’m convinced and hold you n others in high esteem. The caregiver is usually the one needing the care so be kind to yourself n let us hear from you. 🦋

raising2moredems

(638 posts)
91. @Ilsa
Fri Nov 4, 2022, 11:30 PM
Nov 2022

I so understand the offing yourself post - that is my plan also. It truly sucks watching a loved one get eaten alive by dementia. On the "upside", it is a bit easier when the loved one passes as the the loved one you once knew had been gone for a number of years. Blissfully my Mom went fast - hell on my Dad who had taken care of her over the years. But she went faster than her mother and to be frank, in a much more peaceful way.
Please, please, give yourself some time re: the passing of your husband. All I can say re: your MIL is that your conscious is clear. I think it abhorrent that her children bailed on her. Bless you for doing the right thing.

Trueblue Texan

(2,426 posts)
93. I've been waiting all evening to reply to this....
Fri Nov 4, 2022, 11:51 PM
Nov 2022

It's been a busy day and evening. Anyway... I work with the elderly in home health therapy and experience has taught me there is NO other job as hard as caregiving. Period. Caregiving is the most grindingly laborious, exhausting, thankless job there is, and comes with a triple helping of helplessness, depression, frustration, and anger. You should not feel one iota of guilt or shame about your anger, sadness, and depression. They are not only normal, they are human, even healthy under the circumstances, and in your case, that goes double because you are also grieving for your spouse. In addition to all of this, you are at your most vulnerable in so many ways. A note of concern for every widow: sadly and maddeningly you may likely be preyed upon by unscrupulous scoundrels who go looking for those in your situation. Vulnerable, sad, lonely, and angry, you present an ideal target for those who want to drain any assets left to you. I have seen this happen with too many of my widowed patients, so beware.

In the meantime, if your family finds this thread, maybe it will help them understand a little bit what you are feeling. They need to reach out to you and support you, appreciate all you sacrificed of yourself and the grief you are now experiencing. You will need support from family and friends; you will need their hugs, their help to deal with your mother-in-law's belongings, and any practical issues that need to be dealt with. Mostly you will need them to accept you as you are as you process all you have been through and finally come out on the other side. Rest as much as you can. Love yourself as much as you can and be kind to yourself.

You are an unsung hero, dear. Please know that there is someone who has a glimmer of understanding, but no one can truly understand the effort, the heroic sacrifice of caregiving until they have done it.

Bless you for all your hard work, for your sleepless nights and exhausting days. Take this time to rest and heal and grieve. You are not alone. Peace and healing to you.

Simeon Salus

(1,142 posts)
94. You are not alone.
Sat Nov 5, 2022, 12:12 AM
Nov 2022

I'm sorry to hear about your family losses.

I know precisely what you went through in the last days, as I was there myself, giving mom the drops.

For those in the situation currently, I suggest finding a caregiver support group. I can't suggest it strongly enough.

It is a failing of our society that getting old is considered a purely medical condition, and the rest falls on friends and family exclusively.

Our society will change for the better one day, the current situation is not sustainable.

Response to Ilsa (Original post)

AllyCat

(16,178 posts)
100. Lisa, I am so sorry. You've had so much loss.
Sat Nov 5, 2022, 03:41 AM
Nov 2022

Hugs to you. You were a great help to your loved ones in their time of need.

SleeplessinSoCal

(9,110 posts)
101. I'm so sorry.
Sat Nov 5, 2022, 04:19 AM
Nov 2022

Life is more than unfair. It's a crapshoot. Losing your life partner this way seems unbearable. Sometimes I think the only cure for this kind of anguish is a case of amnesia to forget the horrible. But that takes away the good times too.

I'm just so sorry.

LittleGirl

(8,282 posts)
102. I'm so sorry for your loss
Sat Nov 5, 2022, 05:28 AM
Nov 2022

My cousin died this week and I cried even though I had never met him. I know his parents, his grandpa, my first cousin, who are literally heartbroken. He was fighting cancer for a year. He was 15 years old.

My mother died a year ago and because of covid, I couldn’t visit her. All I wanted was a few FaceTime calls in the final weeks but no one in my family would do it. I feel robbed of her final days because of that small request being denied.

If you have some time, I recommend listening to Anderson Cooper’s podcast, All There Is.
He talks about his grief in a way that truly helped me process my own grief. I recommend it highly for anyone going through grief or anticipated grief for care givers.

All my best to you. I’m truly sorry.

Ilsa

(61,694 posts)
106. I'm so sorry
Sat Nov 5, 2022, 08:32 AM
Nov 2022

for your losses, your family's losses. The last pic we took of my MIL didn't have her face in it. The pic was to show everyone the hospital bed in her living room and the rest of the set-up. She deserved to be remembered looking better. I'm hoping that is why your request was denied : so you'd remember her as she was.

Buckeye_Democrat

(14,853 posts)
103. I'm sorry! It's indeed VERY difficult!
Sat Nov 5, 2022, 06:06 AM
Nov 2022

Among my four siblings, it was only me and my eldest brother who took care of our parents before they passed away about 7 years apart. (We're also the only Democrats among the siblings, by the way! The other siblings always said they were "too busy" with their own families if we ever asked them for even minor help!)

My eldest brother is close to death now. He was actually living with our parents because he's legally blind, so he experienced the worst of all the emotional trauma of dealing with elderly parents (who both had dementia near the end of their lives). After Mom finally died (a few years after Dad), my brother said he felt like the experience aged him about 20 years. And he looked like it too, the poor guy! I helped him every chance that I could, working full-time just to subsist myself. Meanwhile, our oldest sister acts like she can still do cartwheels at age 75.

The other siblings all showed up when it was time to collect the MEAGER inheritance, though.

70sEraVet

(3,495 posts)
108. I don't believe in 'heaven' and 'hell', but there has GOT to be some special reward for caregivers
Sat Nov 5, 2022, 08:43 AM
Nov 2022

I grew up watching my petite grandmother take care of my grandfather, who had had a stroke in his early 60's that left his left side paralized. And when my mother was no longer able to care for me when I was an infant, my grandmother took that job too.
Bless the Caregivers.
Take care of yourself, lisa, and learn to treat yourself well.

sueh

(1,826 posts)
109. You are an amazing woman, llsa.
Sat Nov 5, 2022, 09:57 AM
Nov 2022

I'm sorry for your losses. I hope you find some peace.❤️❤️❤️

Marthe48

(16,936 posts)
110. You were there for them
Sat Nov 5, 2022, 11:00 AM
Nov 2022

Whether you liked it or not, whether the outcome is what you hoped, you did the right thing.

My husband and I ended up being caretakers, first for my Mom, then his. Right after we moved his mom to a dementia unit at a local nursing home, my husband was diagnosed with esophageal cancer. He died about 6 months before his Mom did. I feel like the stress in our lives didn't help his health, but I don't see how we could have done anything differently. Even after almost 6 years, I second guess every single choice we made at the time.

When we grieve, there is often anger mixed in with the sorrow, and each of us has to come to terms with how we feel. But sometimes, it is healing to realize that some things are unacceptable, and getting that insight can move you forward.

I wish you well.

appleannie1

(5,067 posts)
111. I have cared for my own father, my mother, and my husband, the last 5 years of his life
Sat Nov 5, 2022, 12:11 PM
Nov 2022

I also cared for my f-i-l before and after his open heart surgery and after his massive stroke for over 3 years. When I brought him home from the hospital, he had a feeding tube in his stomach. I taught him to eat soft foods again. Yes, I gave up a lot but I now treasure those last years, months, weeks and minutes with people I loved and the knowledge they got much better care in my home than they would have ever gotten in a nursing home. Hopefully, someday, you will too.

Ilsa

(61,694 posts)
113. I took care of my MIL precisely for that reason.
Sat Nov 5, 2022, 12:43 PM
Nov 2022

I didn't want my husband feeling guilty about "dumping" her in a home in Texas, one of the worst places to be on Medicaid in a nursing home.

I never fully connected with my MIL. She had undiagnosed mental health problems. She had anxiety about stuff that her mother passed down to her. For example, she was afraid of taking a bath because she might drown in the tub. She wouldn't even wade into the water at a beach because of that and sharks. She was jealous of everyone, enjoyed starting fights when she wanted attention, and generally was immature.

The dementia made all of her anxieties worse. She would say the meanest, hurtful things to me out of the blue about stuff she knew nothing about. But I had to let it go because I loved my husband more than I was bothered by her. The worst pain comes from the fact that we were both looking forward to some freedom, and he missed out on all of it.

appleannie1

(5,067 posts)
148. I am soo sorry.
Tue Nov 8, 2022, 03:46 PM
Nov 2022

That must make his death even harder. After my husband's death, I started going places and doing things I had not been able to do for years. He died in Oct. and COVID hit in June. That not only put a halt to my plans, it kept me almost in quarantine for almost two years. So I understand your feelings, only for a different reason. Now that restrictions have been lifted, keep yourself busy and active. Just do it wisely, being careful not to get sick.

Ilsa

(61,694 posts)
149. Thank you for your king words.
Wed Nov 9, 2022, 01:10 AM
Nov 2022

I'm now pretty certain that one of my dogs is dying. I hope she makes it through the night. She's old, but I love her, and will miss her.

CrispyQ

(36,457 posts)
114. My deepest sympathies.
Sat Nov 5, 2022, 01:24 PM
Nov 2022

I hope you have someone in your life you can connect with. Healing thoughts & vibes.

cilla4progress

(24,726 posts)
115. I echo these comments.
Sat Nov 5, 2022, 03:44 PM
Nov 2022

Ilsa, you have shouldered more than your fair share! I am awed by your drive to survive.

Life is serendipitous - on both the up and downsides. Death, as well.

I, too, have begun stockpiling medications in the event I decide I am ready, based on my age and condition, to leave this plane.

I hope you can tend to your own needs, as you move forward with your grief.

Respect to all the DU caregivers here. You are better than I; I can only aspire to a small measure of your courage and love.

Hugs to you, Ilsa.

Ilsa

(61,694 posts)
119. Such kind comments and good wishes. Thank you. BTW,
Sat Nov 5, 2022, 06:32 PM
Nov 2022

when hospice came over to pronounce her, they took her Ativan, morphine drops, and anything else that's Scheduled 2 or 3 and mixed them with coffee grounds. So, make certain you remove some or most of them, maybe leave a little to avoid suspicion. (I wanted to keep the Ativan. Oh well.)

snot

(10,520 posts)
116. Just want to join in with others' wishes:
Sat Nov 5, 2022, 04:11 PM
Nov 2022

I'm terribly sorry for your loss, and I feel for you w.r.t. your long ordeal. I'm glad to see you have some resolve and resources to help you recover and eventually get some enjoyment out of the rest of your life. It may get worse in some ways before it gets better. Hang in there!

:hugs:

hlthe2b

(102,226 posts)
117. I missed this post yesterday, but saw your post about your grieving dogs...
Sat Nov 5, 2022, 04:47 PM
Nov 2022

I found that wrenching too.

But, I have profound understanding and respect for you--especially to care for your MIL under the worst of circumstances--while you were grieving for your own husband.

I am so glad you are getting some personal care with therapy for all you've had to experience and expend in terms of your own welfare.

Time to care for yourself. I think the efforts you make to get your grieving dogs out of the house and to experience some new happiness WITH YOU, will likewise start your own healing process. I wish you only the very best, Ilsa. My own parents have been gone an incredibly long time chronologically, but it often still seems like yesterday (they died the same year only months apart--my father, after a horrific three-month rollercoaster in a hospital ICU).

May you and your dogs heal each other and may you be able to find joy again. My deepest wish for you all...

Response to Ilsa (Original post)

Rocknation

(44,576 posts)
147. We didn't even ATTEMPT "do-it-yourself" end-of-life home care
Mon Nov 7, 2022, 01:26 PM
Nov 2022

Last edited Tue Dec 12, 2023, 08:46 AM - Edit history (23)

because it seemed that when it comes to babysitting terminally ill loved ones literally to death with no qualifications, no training, no job experience, and no pay -- well, what could possibly go wrong?

We said that if our mother did not yet qualify for assisted living, nursing home, or hospice care, either they would provide her with 24 hours' worth of professional home health care, or we would provide her with a lawyer. She got 24-hour home attendant care until she qualified for hospice.

My most sincere condolences for all your losses.


Rocknation

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