She’s back!!!

You probably thought by now that you would never hear from me again. I certainly thought that. When my mom passed away on 07/04/2020, I decided a much needed break from the world was in order. Watching my best friend waste away for five months right under my nose was just more that I thought I could handle. Her death journey was slow and tortuous. I swore I would never play nurse around the clock for someone dying in my home. You know what they say about best laid plans of mice and men, right? My British aunt tried to drill it into me as a small child. Never say never. How hard is that? Apparently, it’s too difficult a concept for me to grasp.

While attempting to recover emotionally and physically from my mother’s passing, my nephew came to me regarding a pain in his pelvis which was very uncomfortable. This was two days after mom passed. He was seventeen. We were in the doctor’s office the next day. From there we were given an appointment with an orthopedic. The woman in training came out and told us everything was fine. It must just be connected to the growing pains he has had for the last nine years. Unfortunately, the doctor saw something the trainee had missed. He called me on a Friday at 5:05pm. He explained that it was most likely this rare disease I couldn’t pronounce or there was a very small chance it was cancer. Could we please be the Monday when they open the doors for further tests?

As Josh was telling me about the pain prior to the first appointment, the one word that echoed in my skull was cancer. I am not a psychic. Sometimes I just know things. I don’t like it and I am incapable of controlling when the knowledge will come to me. I knew it was cancer and I knew Josh would not beat the cancer. I hated myself for knowing that information because I couldn’t possibly share it with him.

Josh has known for years about my curse so the moment the oncologist confirmed Ewing’s sarcoma, Josh asked the dreaded question. Will I survive this, Aunt Leah. That was the one time I lied to him and I loathe myself for it. I was with Josh every minute of every treatment. I watched the poison they put into his body destroy him completely physically and damage him greatly emotionally. If I had just been honest with him, he would have opted for end of life and never had to go through that hell. It weighs heavily on my shoulders, making it hard to breathe.

I had wanted to blog about our journey together, but knowing he was going to die I couldn’t risk him reading my blog and finding out. I started the grieving process two year prior to his passing in hopes that it wouldn’t be so difficult when he was gone. Wrong answer. Josh passed away on July 28, 2022. A mere two years after my mom passed. I hadn’t even had time to grieve for her yet. We were surrounding his bed and holding his hands as he took his last breath. The sound which comes from deep in the mother’s belly when her child dies isn’t just like you see in the movies. It’s so very much worse. In that moment, I had wanted nothing more than to go with my son. Sometime during Josh’s treatment, our relationship shifted from nephew/aunt to mother/son. For those who don’t know, we got custody of Josh when he was 8 1/2. My sister was in a tough place in her life and I thought if I had her son she would be able to get things together and I would keep him warm and fed until she had gotten things together. It was never my plan to keep him forever. I thought six months to a year at most and she would have him back. Here we go again with those best laid plans. Josh was a delight to have but the guilt are away at me. Did I do the right thing? That was an every day question for me. I don’t want to go into details without my sister having the ability to tell her side. I knew enough to know he was being cared for properly and that was all I needed to step in. I had to fight the court system in Riley County, KS for one year before we could go get him. There was an adult endangerment charge placed against my sister for almost breaking my mom’s wrist and law enforcement was finally able to go on the military base and remove both of them.

The main reason I want to start writing again is so I can put my pain on this page and get it off my chest. Losing a child is not natural. It is the most agonizing thing I have ever been through. The only thing keeping me sane right now is the knowledge that every time I go through it trauma in my life, I change. I become a more compassionate, loving, gentle, non-judgemental empath. I have been a highly sensitive empath since a very young age. My mom’s bipolar disorder came with a healthy side of rage. I was the only one in the house who could feel her body start to tense up. The screaming was quite scary to the three of us. As the oldest, I felt it was my job to protect everyone. I went about learning the various things I could do to quiet that rage and I became very good at it. I never wanted to go to school because I couldn’t cut the rage off at the pass if I weren’t in the house prior to the first scream. I missed half of 5th and 6th grade. Please understand, when my mother was diagnosed, there was one medication only for bipolar and only about 20% of the population could tolerate it. She was not one of them. I try to find the good in everything. Her sickness made me a highly sensitive empath and I wouldn’t trade it for the world. Perhaps someday I will explain why.

My spelling and grammar suck at this point. I will be working on that. Please give me some time. My main goal is to create a place where parents who have lost a child can come and find out they are not alone. I want them to feel fry to speak out if they feel so moved. Anyone is welcome here. All I ask is that absolutely no one give a grieving parent a hard time – about anything, including their grammar. I will block anyone who tries to make this an unsafe place.

Thank you, everyone.

I will be getting my computer in a couple of weeks and at that point I will attempt to learn how to make this look like a blog. I can’t figure out how to do anything with it with this phone.

Love and hugs, Leah

Death watch is life altering.

WARNING: This post is long but has a very important message. I think. Trigger warning if you are dealing with the recent or imminent loss of a loved one and your emotions are too much to deal with – you may not want to read this.

When I was in Italy with my mom in the early eighties, she told me that there were no nursing homes or mental institutions. I don’t know if that information is factual or just based on something she heard while living there. Mom explained how families took care of each other until the last breath was taken. I often feel like Americans don’t want to be bothered with the burden of caring for a loved one to the bitter end. It’s easier to just place our elders in a home and let someone else do the work.

I can now tell you from experience that it is probably the easier thing to do. There is nothing happy or beautiful about death watch. Mom has been under hospice care in my home for approximately two months now. This is the most difficult and painful journey I have ever been on. I have a baby monitor which stays with me anywhere I am in the house. There have been too many nights in which I did not think she would see another sunrise. Obviously, I was wrong.

It never occurred to me that there could be any hospice organizations that would or could abuse your loved one. Am I ignorant or naive? I only know that not doing good research can cause great suffering to a loved one and I will have to live with that for the rest of my life somehow.

The nurse who came here to sign mom up ignored my pleas to change antibiotics because after almost five days, her UTI was still alive and well. She promptly claimed mom’s urine looked just fine and there was no need for antibiotics to be changed or even given at all. Mom could still form sentences and eat food that Thursday. Twenty-four hours later, mom was no longer lucid nor was she interested in food. Three days later she stopped drinking. The following five days were the most agonizing of my life as I’m sure they were hers as well. I stayed up for five days and nights listening to my mom screaming bloody murder. She couldn’t tell me what was wrong. Much of the time she was running a fever of around 103.5°. I was told the screaming and the fever were her way of fighting the death process. The answer seemed strange to me because she is the one who chose to stop taking all life-saving medicine because she wanted to die. Why would she fight it so hard? Mama has been in so much pain and sick for so long that she didn’t have the will to live anymore. She had/has no quality of life. She could no longer walk and incontinence had taken hold. The family told her it was okay to go. We would miss her but we would take care of each other and be okay. Why was she insisting on fighting this then?

The thing is, she wasn’t fighting the process. Mama lay writhing in agony for almost a solid week because she was septic from her UTI. By the time I figured it out and convinced them she needed antibiotics, she could no longer swallow. They refused to return my calls. After nine days of their care and five days and nights of hearing Mama’s screams, I snapped. I completely lost my you know what. I called for an ambulance against their advice and wishes. Mama deserved to be somewhere where people would actually care for her and fix what was causing her pain. When speaking with her ER nurse approximately an hour after she arrived, I could still hear her screaming. Her nurse was three rooms away from her. For days after she was taken away I could still hear her screaming in my head. I couldn’t escape the sounds. Perhaps it was punishment for not doing my research, for believing “the professionals” when my gut told me something different. The only thing they did for my mom was to give her more and more morphine which made her hallucinate and have vivid nightmares. I am so grateful she has no memory of those nine days.

Mama is resting comfortably in her room thanks to our new hospice company, Affinis. Every single person from the director to mamas bath aide just ooze love and compassion from their pores. They don’t get angry if I call after hours. Every employee who has walked through my front door has felt like family – immediately. It’s not a job to them. It’s a calling. It is obvious they want mama to be as comfortable as a human can be during “the process” and they care deeply for the families as well. Mama’s nurses have listened to everything I have told them with the knowledge I know her better than anyone. The difference between the two companies is night and day, light and dark, evil and goodness. I will be eternally grateful to them for being here for mama and my family during this difficult time.

The whole purpose for this post is to help ensure that no other loved one has to endure that kind of suffering ever again. I beg of you to learn from my abundant stupidity. Hospice is supposed to be loving, compassionate, caring and honest. They are not supposed to let your loved one suffer by convincing you of some cockamamie bullcrap story about the process. I have left out many details as I intend to report both the nurses and the organization itself to the proper authorities. I could go on for days talking about the things they did to neglect her or cause her abundant suffering.

I’m not saying you have to use AFFINIS if they are in your area, I’m just saying it would be the best decision you could ever make for your loved one. Please, please, please just do your research. Look for ratings from many websites. Get a referral from someone who has used the company you are looking at. Most importantly, trust your own instinct. If something doesn’t feel right, it probably isn’t.

Caring for your loved one until the end is not for the faint of heart. Mama’s kidneys are functioning at less than ten percent. Even with all the nausea medications we have on hand, she still throws up several times a day. Her body is filled with toxins and she has refused dialysis. Congestive heart failure has caused her body to fill with fluid. She has also refused the medications which prevent the fluid buildup. Due to chronic UTI’s, a catheter is not an option for her as it causes great pain. She is not a small woman and we have to change her several times a day. She has to be rolled on each side once to get the changing done and it absolutely terrifies her each time. Mama is certain we will let her fall off the bed. We spend a lot of time reassuring her and it really doesn’t seem to help.

My seventeen year old nephew has stepped up to the plate in ways I never thought a teenage boy would. He is my assistant in all matters involving his grandmom. She has had custody of him for almost ten years during which time they have lived with us. My husband and I have handled all the parenting and most of his financial needs as neither of his parents can see fit to help support him. Another story for another time. Their choices are something they have to live with at the end of the day. He has turned out to be a really great kid. I almost feel sorry for them and their loss, but again, their choice.

I wouldn’t be able to care for mom at home until the end if it weren’t for Josh and the way he has stepped up. I could never change mom by myself and Josh is there to help every time I ask. I couldn’t be more proud of this kid if I tried. He is my hero. Josh has made it possible for mama to die surrounded by her family instead of in a nursing home being cared for by overworked and underpaid nursing staff. The thought of her being in a nursing home and us not being able to see her because of this covid-19 crap is more than I think I could handle. I don’t want her dying alone. I can not even begin to imagine the trauma families and patients are going through not being able to see each other right now. My heart goes out to all of you.

It is almost four in the morning and I was just waiting until I could give you your next dose of morphine so I could try and sleep for an hour or two. Suddenly, the choking and coughing started again. I think you have pneumonia for the fifth time in eighteen months. The morphine calms the spasms in your lungs but it takes almost twenty long minutes to do so. You cough so hard and so much that you throw up again. I have lost count but I think that makes the seventh time today. It means changing your gown and all the towels I have surrounding your face and neck. It means washing your face, neck, ears and hair. It means making sure all your pillows get put back in their place. There are pillows to support your hands so they don’t swell and pillows covering the bed rails because you like to bash your arms against the rails when you have bad dreams. Taking care of you is an around the clock kind of job, but isn’t that how it was for you when I was a baby?

It’s important to understand that hospice doesn’t come in and do all the dirty work while you go on about your normal life. They are there to make sure your loved one can die in peace and with their dignity. They will come in and bathe your loved one as many days as you want. The nurse comes on a schedule based on your loved ones condition. They prescribe the meds needed to keep your family member comfortable. They have a social worker willing to help find other services you may need. They have a chaplain who is willing to help care for all the souls in the family. The real work is up to you. If you can’t or don’t want to devote your entire self to your dying loved one, then please don’t opt for hospice. Most days I am convinced I will have a nervous breakdown before dark-thirty. My mom and I have a very rocky history and I never imagined I would be willing to care for her like this in the end. There is something very cathartic about the experience which I can’t quite put into words yet.

If you are in a place where you are having to make this kind of decision either now or very soon, I don’t mind answering any questions you have. If I don’t know the answer, I will do my best to find it for you.

Dee and Jim, thank you from the bottom of my heart for referring Affinis! I was so lost without them. Your entire family holds such a special place in my heart. I can’t thank you enough for walking beside me on this painful/beautiful journey.

Affinis, Amanda, Dana, Janice, Brittany and my most precious Sam, there are no words which can adequately express my gratitude and love for you all. You are truly the best of the best! What an incredible team you gals make. Top of the line, to say the least.

Sam, there is really nothing I can say other than my heart adopted you the moment you walked in my door. Your beautiful smile and loving heart will live forever in my spirit. Thank you for changing my mind about hospice. Thank you for telling me a million times that it’s okay if I need to call after hours. Thank you for making me feel like my thoughts and opinions about my moms health do matter. Thank you for trusting that I know her better than anyone else ever could. Most of all, thank you for being the most beautiful, compassionate, caring, honest and smart angel God has ever sent to me during a time of desperate need. Thank you for just being you. You exude love, compassion and professionalism the instant you enter a room. I will miss you more than words can say when this is all over.

Thank you for taking the time to read this long post. Please stay safe and hold your loved ones close. We never know when it might be the last time we see a loved one.

Love and hugs,

Leah