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,