Feel so lost

Posted by vickiekersch @vickiekersch, Fri, Sep 13 8:15am

This is my first post to this group. I had no idea Mayo Clinic had a Loss & Grief group. 6 years ago I moved to AZ to be closer to my aging parents. I left an abusive marriage after 16 years and was finally able to be near my family again. Only thing was, within 2 years, my mom was my caregiver- I was diagnosed with breast cancer and was undergoing treatment. My mom was my Hero, she survived ovarian cancer 36 years prior, and I couldn’t get through it without her. Then, in 2018, my mom started to not “feel well.” Doctor after doctor, they all said she had anxiety, indigestion, asthma, food allergies, hiatal hernia. No doctors ever sent her in for any kind of testing. They all said, due to her older age, there was no need to start testing. Elderly people are treated so poorly in Arizona! By March 2018, we were in the ER quite a few times. My mom was getting very weak, she could no longer hold food down, and she was starting to fall at home. The paramedics were called several times to help her up off the floor when she fell and couldn’t stand back up on her own. By April 2018, she went in for emergency surgery for a “ruptured intestine.” Then during surgery, they found a huge tumor that was blocking her stomach and intestines. The surgeon said it was beyond his s one of practice as he was a General Surgeon for the ER Department but he was educated enough to know he needed to place a permanent feeding tube in her and refer her to oncology. He told us it was not encouraging for a good prognosis, but suggested if she had the will to live, they maybe could if she could gain strength back have chemo to shrink the tumor and surgically remove the tumor and then remove the feeding tube so she can continue treatment to possibly stabilize the cancer. All my dad heard was “she will have chemo, remove the feeding tube, she will be cured.” He already hit the dental stage that my mom was not doing well. And I was all alone in this fight to help him through this. My “sister” lives in Maryland and only involved herself when it benefited her. My youngest son lived nearby and he and I were up against an incredible fight to not only help my mom through what she was going to face when she woke up from anesthesia, but now with my dad’s reality of losing his wife of 56 years.
It took several days for the biopsy to return to us. The oncologist asked us to meet with him. Guilt #1. I was sick and had an appointment with my PCP to get a clearance to return to work so I couldn’t be at this appointment with my mom at our mutual cancer clinic, but I agreed to attend by conference call. I could hear my mom crying for me and begging for me to be there with her. My dad again still in denial, decided he hated this oncologist because the oncologist gave my mom 2-3 months to live and stated she would not survive through chemo. My dad only heard, she will be cured after having chemo, surgery, and she will eat again. He expected of me to line up several 2nd opinions with my mom, who was fully bed ridden now and 100% on a feeding tube with stage 4 adenocarcinoma with an originating diagnosis of stage 4 pancreatic cancer. My mom chose to go home and have palliative care work with her, I did what I could driving over in the morning, at lunch, and after work to help with medications and feeding as well as taking her to the bathroom and changing. My dad became very angry with me saying I saw him as an “idiot” when I asked him if he would be able to help with the feeding tube while I was at work as I was not going to be able to leave in an emergency to get to them. He started yelling at me every chance he got. He kept asking me when the 2nd opinions were happening. I was using all extra time calling cancer clinics and learning that if she wasn’t outpatient and walking, she probably was not going to be accepted. I asked each one of the ones who agreed to schedule with her to call her directly because she would know her own schedule. The day she told me U of A said they don’t accept her insurance was the day I knew she was accepting her own fate and she did not want to move forward. I knew they took her insurance, they told me, but I let it go. My mom went into hospice and stayed home. My dad continued to yell at her when she said she needed help going to the bathroom. She would call me, I would go to their house in the middle of the night to help and of course get yelled at too by my dad for the interference. He had these ideas my mom was going back to her childhood and pretending to be a little 6 year old girl needing to go to the bathroom, but doing it for attention. My mom would have an accident, start crying, fall on the floor, call me and it would start all over again….until 7/1, she fell out of her bed bleeding internally in the middle of the night. She was rushed to the ER, then to a hospice hospital where they kept her heart beating until family could get there to say their goodbyes. She passed away at 2:10pm, 7/1/18.
Hospice said my dad had to move in with me, he was unable to make good decisions on his own. He was not happy with this. He and I already had the strained relationship left over from my mom’s illness and death. I was driving him back and forth all hours of the night to their house, the bank, the stores they frequented, restaurants they always went to, etc… one night I got home from work late. He said, let’s go out for dinner. I told him, No, I have to feed the dogs, I’m tired and there are things in the refrigerator. I go to the refrigerator and tell him what’s in there, he ignored me, and said “let’s go out somewhere I’ll pay.” I told him, “can you just be grateful for what others do for you?” His response was, “I don’t have to. I just have to be kind.” That’s basically the last thing he ever said to me. He went into another room, called my son to come pick him up and take him back to his home. He decided to live in his home while it was up for sale. He never responded to any of my phone calls. I finally got a call from the hospice social worker that my dad was found in a pool of blood on the floor of the family room. He was rushed to the ER. I left work and met him there. I’m the Assessment he called me his sister (who he hated) and yelled at me, cussed at me, threatening me in the ER and the hospital. I have a therapist I see at my cancer clinic who recommended I not communicate with him during this emotional time as I was preparing for a very hard Neurosurgical surgery. I had multiple complications and almost didn’t survive. My “sister” took it upon herself to cut me off of all planning for all preparations for my dad and my dad then started telling stories to all he knew that were not true about how horrible I had been to him. After I was allowed to leave my home and return to work (8 weeks), my dad entered hospice at a nursing facility. I went to see him several times and cried over our relationship. He was sweet to me in front of other people or family, but abusive to me when we were alone together. He passed away on 10/4/18 3 months after my mom passed away and I was called 30 minutes after he passed, after the hospice nurse called my “sister” who lives back east, even though I lived 20 minutes away, and when I picked up his stuff, I found out that hospice nurse knew he was having difficulties the night before because he aspirated but never called me. My “sister” and I were both equally POA’s but she chose and my dad chose to exclude for reasons I still don’t understand. I had to hire a lawyer to solve trust fund issues as my “sister” stole everything and even told the mortuary to not include me in the funeral preparations or the upcoming memorial for the unveiling of the memorial plate and I own the plot property. Due to my cancer diagnosis and a spinal cord injury and Ongoing spinal cord disease, I don’t have the fight in me, but I don’t understand why all this was done to me. My dad blamed me for my mom dying of cancer, I have guilt for that. I’m not my dad’s sister, I didn’t abuse my dad, they were choices he made, but he has passed away and there is nothing I can do to tell him or repair all those relationships he tore down with lies and false stories he spread while I was trying to recover and live through traumatic neurosurgery, right after my mother passed away. Sorry this is so long.

Hello @vickiekersch I am sad at your story, but pleased you found the grief and loss discussion here on Mayo Connect. I am Scott and I was my wife's caregiver for the 14+ years she fought her war with brain cancer so my comments are based solely on my experiences during this time and as I continue my daily fight with grief.

There are no reasons we are given anything in life. There is no rhyme nor reason to it. As I say to our adult children all the time "there's a reason for the expression 'sh*t happens', because it simply does". My wife was only 49 when she was diagnosed. No cause, no reason.

We often said things we shouldn't have during her illness. I believe everyone does when they are either exhausted from caregiving or exhausted by the toll the pain and their own grief at dying takes its toll. Some folks apologize, many don't. If I knew why folks do and some don't I guess I'd be a gazillionaire psychiatrist with wonderful answers 🙂 During my wife's illness she felt the need to make amends with only one of her five siblings. More often than I can count she would lash out at me. Her neuro-oncologist said it was common for the person suffering to lash out at the person they felt safest with. The more I thought about that the more I came to understand the grief my wife must have been dealing with daily over the losses of so many abilities in her life and her pending death) that while she had to hold it in for many, it was the safety of our

I believe the journey though grief is personally unique to each of us who grieve a loss. It matters what we are made of, what our love was for our lost one, and of course how each of us chooses to think about the hole that is left gaping in our souls. For me, my journey improved the day I took the book someone gave me on the 'stages of grief' and tossed it into the trash. At that very moment I gave myself permission to grieve how I needed to grieve, not how someone else thought I should do it. That permission didn't lessen my grief at all, but it allowed me to actually more fully grieve.

Thanks for posting here.

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Hi. I wanted to thank you for sharing. Please don't be sorry for your long post. I feel for you and your grief. I can't imagine losing both my parents in such a short time, at odds with sibling and be fighting cancer. You have been through so much. I hope you are finding the love and counseling that you need. I wish I had words that could help take away the pain and grief you are going through. but just know that people out here care.

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Hi Vickie ! no apology needed. Your story not only interesting but sounded a little familiar to me from an experience I witnessed with family members of my own. I am so sorry that you have to process so much at one time. That is definitely a lot to handle…my goodness. its really hard to loose people you love, and it may be challenging for some to love people who are being mean because they are ill. Its too bad we are not born knowing how to deal with issues that come our way. I have lost so many people in my life and i ofen wonder, why was't i ever informed that they will 1 day leave me and I would have to live in this world without them? I would have to figure out things on my own. The only thing we could do is the best that we know how to do when it comes at us. I hope that the if you have wonderful memories of your parents that they overshadow the latter experience that you just endured. Its important that through your own illness that you can live your life and try to find peace, a sense of calm and enjoyment.

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