I have posted here before and received some responses that were really helpful. It's hard to put into words the grief process I have been experiencing but it's been awful. I was put in a sudden position of having to figure out my MIL's (almost 80) entire life, bring her near us after she had been suffering from end stage liver disease, type 2 diabetes, some minor CHF and stage 3 kidney disease for many years. When she arrived she was so exhausted and barely eating, just a shell of herself and in total denial regarding the state of her health. She wanted to live independently and did not have the money for assisted living. I was willing to take her in but husband said no and the stairs would not work for her. I can't explain it but when we got her she had just gotten out of the hospital where she had almost gone into a coma and died and she just never seemed to bounce back. She had constant diarrhea but the only way for her to really have a somewhat clear mind was to take these medicines that gave her even worse diarrhea and she hated them. Long story short she was a mess but I did my best. I arranged home health, she got PT and OT at home, took her to the liver doctor who seemed to just want to push her along with recommendations to eat more and get a scope procedure...of course she ended up falling in the shower, so more PT and more OT, trying to make her senior apartment work with modifications- then it all hit and we were at the hospital with her 3 x in less than 2 weeks. Fluid drainage needed from her belly again (after many years of off and on fluid), incapacitating headaches, swollen feet and ankles, then a DVT that would require hospitalization for risky blood thinners so hospice was brought up and I needed to make a choice. I don't know why I didn't think it through more but I just went with hospice because she seemed so declined and it seemed great to get more help for her at home with all the issues she was having. She was never able to get additional liver procedures or a transplant due to her heart. She actually seemed to do better on hospice-showers, got to visit with all of my kids, tons of visitors, we were able to bridge care for her in her senior apartment without need for assisted living or a nursing home. She could still get around with her walker and did not seem confused or disoriented so we did not make her take the meds (what was I thinking!?) that were upsetting her GI system and she could eat a little more and have better quality of life-I feel it was a practical decision. This is what I regret. I feel like if I had made her take those meds she might still be here. Was it too soon to opt for quality of life over quantity? She was still pretty miserable-falling,leg cramps, fluid- all the things. Although we don't know for sure what caused her final decline in my mind it was all about those meds! I replay things over and over and even have dreams of going back and changing decisions and changing the outcome and making her take the meds. She did have a pretty sudden decline after over 2 decent months on hospice- it could have really been a number of different things- that is what is kind of weird about hospice when someone has so many things wrong. She just got weaker over a weekend, became bed bound and sleeping more-never agitated or confused and still interacted a little-we were told to give her some low dose meds at that point and within days she peacefully drifted away then turned bright yellow. Everyone talks about what a peaceful death she had and are moving on but here I am still replaying all the decisions and feeling so responsible and NOT at peace. 6 months behind everyone in my grief process. It is getting better because I realize things were just going to get worse for her than it already was but this has been torment for me. I loved her and miss her terribly but can't stop replaying all the details. I have done grief counseling and therapy and have my faith -does this get better?
Your MIL was very ill. Her stomach being extended and water having to be removed is the last stage of liver desease and meant she was dying. Then you add on to that diabetes, CHF and kidney disease. You made a good decision to call in Hospice. You are a good DIL. You made her final time here more comfortable for her.
Her confusion at times was probably caused by her illnesses. The liver and kidneys give off toxins when not working right and can cause confusion. CHF means that the brain may not be getting enough oxygen so confusion. And diabetes is a killer on its own. It affects the organs of the body. I would say your MIL passed from liver disease because she turned yellow. At her age they would not have allowed her on the transplant list. My neighbor was taken off at age 75 and passed a year later.
You did enough, her body was was just giving out.
Go ahead and mourn the loss of someone you obviously cared about. And take your time if you need to. There is no rule on how to grieve the loss of someone.
Stop playing the What-if scenarios in your mind. There are an infinite number of factors which, if they had gone a little differently, could have changed the outcome slightly. She was dying anyway. You made the best decisions you could regarding her care and her comfort. Feel good about doing that for her.
Your poor MIL. she had a lot going on.
You helped her have a better quality of life than she would have otherwise.
The loss of a loved one is always difficult and even more so if you are directly involved with their care as sometimes the decisions you make directly effect their quality or quantity of life.
I hope the people that make decisions for me will do the same (they better I have it written down)
Does the grief get "better"? Yes and no.
Think of the pain like you would an open wound.
The wound heals but along the way you bump it and it hurts again, sometimes worse than the first time it happened. Then time passes and it heals more and you are left with a bright pink reminder, that fades and you are left with a scar that will be with you forever. Even the scar changes sometimes it will be more visible, sometimes not so much.
The first of anything a birthday, any Holiday, Mothers day, will hurt a lot the first time they come around. So prepare for that.
Rather than feel sad celebrate. Remembering what she did, her favorite foods, 'her" recipe for stuffing, "her" recipe for Tuna Noodle Casserole...make them, talk about her. She will live on in the stories you tell. The funny ones, the sad ones and the ones that pissed you off.
There is a saying...
A soldier dies twice, once on the battle field, once when they are forgotten. When we lay a wreath at the grave of a fallen soldier we say their name so they are never forgotten.
This is true for everyone..not just soldiers.
Keep her name alive.
And a side note... my Husband died almost 10 years ago this month. To this day for some reason.. out of the blue a song on the radio will hit me a particular way and I start to cry. I can hear the same song any other way and it is just a song. Why does something hit me one day and not another? When you figure that out let me know. (I do believe an "ugly cry" once in a while is good for the soul)
In the past, I’ve had chronic diarrhea for two years and I can tell you personally that it really weakens you.
I think you had no good options. If she stayed on the meds, she got a little better brain power, but got the chronic diarrhea. Off the meds she had less diarrhea, but other things declined.
I think you were in a no-win situation and she would have failed regardless of being on the meds or off the meds.
I am sorry for your loss. It sounds like you made the best choices you could have at the time.
It’s really stressful to take on all the management and decision making like you did when a person you love is ill and dying. I had to do it for my dad. I am grateful that he was pretty clear on what he wanted even though he had dementia. I couldn’t always give him that, but I tried.
The guilt and second guessing will diminish if you let it. And that means finding ways to stop replaying it all in your mind by forgiving yourself and focusing on other things in the here and now where your attention is worthwhile — whether that is chatting with a friend or family member or appreciating a nice cup of coffee or watching birds fly. Life is happening right now. Let the past be the past.
You were not responsible for her ill health or her death. You all did the best you could. She is at peace now. I wish you peace also.
You ask “does this get better?”. The answer is that no, the difficult end times don’t get better, but focusing on the good old times will help you and your memories of her. Memories to keep, better than the end!
Not so long ago – even when I was caring for my M – there were not so many choices or options. I did what M wanted and the doctor suggested, and I was there with her until the end. It was probably helpful to have so few options on the table – just ‘be with her until the end, and see if you can keep her happy’. It was ‘good enough’ advice. M and I both did our best.
good advice!
think most of us are here too experiencing this..,
🙏
I am so glad that you were able to take her out despite her issues..
you are much stronger than you give yourself, along with your husband..
you two just need to breathe and celebrate together and just KNOW she is pain free and YOU TWO ABSOLUTELY DONE GOOD!
Go out and celebrate her, laugh and share stories again.
It's okay to cry, miss them, but just take a step forward. My friend got me into pickleball. I love it. My pickleball friends just make me laugh, and they too laugh at me..,
It's a lot of fun. I met a lot of new people and they are so friendly.
If you have time, try something new, art, pickleball, photography, or just sleeping.. I'm sleeping a lot now.. well that's not very productive, but napping is the other part of my day..
I have my hospice dog now.. she is with me 24/7.. I decided no aggressive treatments, it's not going to fix her legs.. Quality is better than Quantity.
.
Just know you did the right thing.
QUALITY is the best Option
🙏
What if God was God? What if God had all, every decision or non decision, in mind when you were led to make the decisions you feel only you made?
Pray for “Divine Order”.
Pray with acceptance of all that has happened, pray for guidance in your own next steps in mourning her loss.
Set your intentions to heal. Meditate, walk, focus on your biomarkers and know you are nurturing your body with the food needed to feel better.
Make healing yourself your full time job. Know that you have a form of post traumatic stress disorder as well as grief.
Here is a link to a pubmed acknowledgment that this is real issue for caregivers.
https://pubmed.ncbi.nlm.nih.gov/32757692/
Complicated Grief With Post-Traumatic Stress Disorder Addressed With Accelerated Resolution Therapy: Case Discussions
Look up Accelerated Resolution Therapy
for grief.
Regarding grief counseling. Through Brene’ Brown I found out about complicated grief. Also David Kessler who worked with Kubler Ross. Here is a link to his website https://grief.com/podcasts/
Check out some of his podcast to see if there are helpful discussions that might help you gain more clarity and peace.
It is very common to second guess ourselves when someone we loved dies…even when we weren’t the primary caregiver.
The difference between you and your husband’s acceptance might be that you felt totally in charge…he did not.
You did so much right. She was so very lucky to have you. She came to you with many comorbidities and you embraced her care. You made it possible for her to have family visiting and her actual death was not lingering.
You are a blessing to the world. If you don’t believe me, just ask God.
PS. Your brain is trying to make sense of what happened.
“The Grieving Brain: The Surprising Science of How We Learn from Love and Loss”
By Mary-Frances O'Connor
look up her TED Talk and other podcasts online. She has a lot to share.
how is your husband handling his mother's loss?
You did an absolutely great job in caring for your MIL.
YOU DID YOUR BEST! SHE IS SMILING FROM THE HEAVENS ABOVE. She knows you loved her and took wonderful care.
So be kind to yourself. Thsnk her for being in your life and the memories.
I am trying to be kind to myself as well.. I feel guilty too, for everyone I took care of snd lost.. my dr says it's part of life...
I'm trying not to feel guilty...
It's a process.. do not feel guilty..
smile and laugh.
Think of the happy times..
🙏
Stick with counseling or a group to go to. You will see you aren't the only one who has gone through this very hard situation. It is torture and everyone who has gone through it will agree.
Grief recovery is different for everyone. Not an easy process, and don't hate me for telling you "It takes time to heal." I lost the best man in my life 23 years ago, and on the outside I look fine, but I can be doing dishes and hear a song that reminds me of him, and end up sobbing for hours. He was so young and was supposed to be here to help me! I question why God would take his biggest fan and give him such a terrible death?
All the more reason to plan your own end of life and what you want (or don't) to happen, and get it on paper and signed. Do you want to torture your husband or kids the same way? People like us "get it" more than we ever wanted.
I could say it sort of gets better...but would be lying to you. You will replay every detail for years. Find a way to make it stop now, and put into practice. When you start overthinking again, just get up and move, go do a chore and force your mind to switch gears. Find a way to make it stop. I will say 6 months is not enough time yet.
Your MIL would not want you suffering like this. She knew what a strong supporter you were. She knew you did your best, despite fear, sorrow, regret and more. You need to tell yourself you did good when you drift into sorrow mode...because YOU DID. I can feel it all the way to California!
Wishing you peace in your heart for all the good decisions you made.