Caregiving and Guilt

[EM trails]

My mother passed away Sunday night. I'm trying to process the situation. She went on hospice in March. I left my job to do the care giving during this time. She had end stage Parkinson's, but was still eating, interacting with me, she was no longer standing or walking. But was able to still write letters to her friends and family. almost 3 months went by of day to day care giving. Feeding, giving meds, changing out diapers and bedding. A daily routine that was going for weeks. She had some issues with saliva the last week but it was manageable, an issue with aspiration can happen.

So I decided to coordinate a 2 day trip away. My sister lives near by and my Father is here at the house, they are both capable adults. So they said no problem taking care of her while I was out of town for a couple of days. I called them to make sure everything was going ok and to let me know everything was going ok. They said everything is fine, similar routine there. But the day I was driving back I called and they said she was gurgling and having an issue. As I got back she obviously went to a different stage. She could barely breathe. I asked them what happened? or if something got out of the ordinary? They said she just started it right before my call. It didn't improve, we called the nurse in and she said she wasn't going to last much longer. She passed away later that night.

The amount of guilt and pain that I feel for not being there to protect her in such a fragile state, for my own selfish reasons to "take a break". I assumed she would be fine with my sister and father there.  So now I have my own guilt, along with blaming my sister for not taking care of her better. How can I forgive myself and them? It's too late now. Again my mother was not doing great and was relatively stable off and on, but she was on hospice, and was at end of life. I just don't see how I will get over this. It will permanently fracture my relationship with them.

[Kazuko]

Hi I read your story and I can somewhat relate.

my mother died at home with hospice. What happened was she was diagnosed with cancer April 2019 she moved into my home and I cared for her until the day she died on April 10, 2021.

she was mobile but she had leg issues because of the cancer. My mom had radiation, chemo, keyTruda  lymphedema therapy. I did most of the transportation and care for her during these appointments sometimes my stepfather would help so I could take a break for one or two days. however it was very rough for him because he was 90 years old at the time. therefore I did 90% of all the work of caretaking.

February 3, 2021 was the day I feel I really lost her and I feel so guilty. she had been doing so well only up until the two months prior to February 3 she did not have very good lab results so they postponed her treatment. this should’ve been a warning sign for me but I was so busy with my grandchildren going back to school and I also took care of my grand children three days a week and full-time when they were out of school.

on February 3, 2021 my mother came into my room and said she wanted me to help her with the new mask I bought her to protect her from Covid.

  this will stay in my mind until the day I close my eyes and I die. I was curling my hair and almost done as she walked by me and asked me to help her with her mask I said to her sit on the bench I’ll be right with you. The bench was only about 2 feet high a ottoman in my room which had a pillow sitting on it. My mother was a very careful person to this day I do not know why she did not remove the pillow instead she tried to sit on the edge and she slipped off the Ottoman. 
 

😞my mother broke her hip my husband and I rushed her to the hospital and from this day forward everything change. my mother was never the same she went into a nursing home for two weeks came back home and then went back into the nursing home for almost 2 months.

🐰 April 4th, easter I went to go visit my mother in the nursing home which was also a terrible cause this was during Covid and I could only visit with her for 30 minutes outside on a patio. She looked terrible changed so quickly from one day to the next so weak so tired barely could talk. 
 

😢I knew it was time to come home I told her mom I’m going to bring you home very soon!!I said I love you mom….and with all her breath that she had ….she said I love you….these were the last words she ever said to me.

😢April 6 Tuesday I brought her home in a medical van I had her room all set up with her medical bed and hospice came over and have me with all the medication‘s. Then they left and it was just me I mean my family did show up but I was the one who changed her diapers gave her in the morphine to help her ease into death.

my mother kept her eyes open on this day and my brothers my nephews and the rest of the family came over to see her and talk to her however my mother could no longer talk but her eyes were open.
 

👦👦my grandchildren came over the next day in the morning they came in the room and said “hi Japanese grandma” she did not talk but gave them a big smile after they left the room she closed her eyes and she never open them again. 

😞my mother was already gone this was not the lady that was with me prior to February 3 this was my mother who I was helping pass along to heaven and to ease her pain which I did… I slept on the floor in her room to make sure that I would wake up in time to give her her morphine so she would not have any pain.  I changed your diaper I moved her from her side from her back so that she would not be in one position. 

April 10 5:20 PM everyone was here about to order some takeout dinner my husband went in the room to see my mother and told me that she was no longer breathing that he thought she had passed in which she did.

it has been now over two years and the pain has eased some but I get these moments just triggers that remind me of that day and also how much I miss the lady that she was before February 3 during her time with me here even though she had cancer and Cove it was going on we try to get out take her to her favorite restaurants and eat outside go to her favorite stores to do some grocery shopping and clothes shopping .

I have no regrets on the time I spent with her or the things I said to her because I always told her I loved her. 

Part of my mind knows that her time was up …were signs before February 3 ….lab tests were not good she had some bad bruising which we later found out she had hepatitis C liver had cirrhosis.she was not in a good place she had cancer and Hepsie there was no cure for her.

😞However, I know how you feel =
why did I say sit on the bench what if I would not have said this…..would she had a live longer ??    

I will really never know and I will always remember that morning she was so looking forward to going to the hamburger place and sit in the car and eat her favorite hamburger and go to her favorite Japanese grocery store it was a beautiful morning

I remember opening the door to her bedroom and her sitting on the edge of the bed and her favorite pink nightgown and I told her mom I’m going to get ready curl my hair and get dressed and we will be going soon. she looked at me with a big smile on her face and said OK Mary we will go have a good time.

The next thing that happened with her coming into my room fully dressed which was also something different because she usually would sit in the room on her bed and wait for me to put her stockings on and her shoes this time she got fully dressed and walked in my room and asked me to help her with her mask.

I know in my mind it’s telling me that it was meant to be ….maybe I saved her from more suffering

If she did not fall and break her hip on the bench she would have had to get chemo because a keyTruda was no longer working and chemo would’ve been really bad for her they would’ve gave her something more stronger this time and she would’ve been sick and suffering Her final time on earth which probably would’ve only been six months to one year on strong chemo.

as a hospice nurse told me once everything happened the way it was supposed to I dealt with the information that was given to me I did the best I could. When these thoughts enter my mind I try to remember to count my blessings there were some good ones during her time with me she had very little suffering and sometimes it was almost as though she was not even sick. 
 

🤗Big hug to you!!!

🙏🏼 please do not blame yourself.

😇 you did the best you can =                                  you are human = you are not perfect.  

💜do you love your mother and your mother loves you very much!!!

🙏🏼👌take care of yourself= it will never go away but it will get better keep busy live in the moment

 

[Traz]

Dear EM trails & Kazuko,

My sincere condolences on the loss of your moms. Reading both your stories, I was struck by the devotion and love of you both, for your beloved mothers. 

I admire and am in awe at your strength. I cared for my mom only a few weeks before she passed and it was a time of immense stress and sadness. I could not have done it for months on end, so you both have my deepest respect. 

Please, please realize that you have nothing to feel guilty about whatsoever. People who are caregivers in these situations NEED a break. No one can be a full time nurse 24/7, no one is super human enough. EM, I understand how you would be angry with your dad and sister. It's hard not to feel they were some how missing something or not on top of the situation. Please know that with old folks, things really can deteriorate rapidly. Literally fine one minute and on the brink the next. I've been told that by doctors and have personal experience with it as well.

I'm sure that they did the best they could but it will take time to process your loss. Maybe in time you could consider some grief counselling if you're able to. They can help you sort through these deep and painful feelings. I'm in a process myself of forgiveness, regarding my own sister. She did nothing really to help our mom or me during her illness and subsequent death. But she sure was there when the china cabinet was being sorted through because she wanted certain things...

Anyway, it will take a lot of time and healing. There is nothing to forgive. You both did everything for your mothers. 

And Kazuko, please don't blame yourself for your mom's fall. You were stressed and you had her best interests at heart, wanting her to sit down. You didn't purposely set her up to fall and break her hip. It was a very unfortunate accident. The guilt we put ourselves through... I felt it too after my mom passed. 

I know she would be telling me to "get over it" and move on lol.. She would not want me to live my life feeling guilty. And neither would both of your moms. They're in an enlightened state now. They have greater knowledge about life and the universe and the reasons for things. 

Those are my beliefs anyway. I've watched a lot of Near Death Experience stories on YouTube and they've brought me great comfort regarding the afterlife. 

I wish you both peace and healing.

Traz

[EM trails]

Thank you for your posts Kazuko and Traz.

Your posts are very helpful to me. A couple weeks have gone by and my mindset has shifted. I don't blame my family for what happened. It was not their fault. We have to stick together and support each other. I think my emotions were too raw at the moment everything happened. Looking for some sort of scape goat.  It comes down to acceptance, and being grateful for the time we spent together. We can heal and move forward. It's going to take time, but I believe we will get through it. I'm starting to come crawling out of my hole and trying to deal with real life again, slowly.

Thank you again for your support. 

EM