Caring for a Dying Parent: It is a Rite of Passage
When I asked my terminally ill mother to move in with me, I expected resistance - she was fiercely independent. But her response surprised me. “What makes you qualified to take care of me”, she asked?
It was true - I was not a nurse. But despite her astute observation, I had something that mattered even more - a heartfelt willingness to prevent her from dying alone or neglected. Nursing homes are frequently understaffed introducing the possibility of decubitus ulcers, asphyxiation on her own fluids, falls which cause a fracture or hemorrhage. She could lie in her own excrement for hours. My mother deserved to die with dignity after decades of selfless service to her church. After all, she saw her husband through his death. Her life had now made full circle.
Yet the strength it takes to watch a parent die is easily under-estimated. Aside from the medical issues, would I wane physically or emotionally? It takes a certain poise to handle bodily fluids with grace. It’s difficult to hear a death gurgle and not run from the room. Could I encourage mom and support her knowing full-well the end result would be death? Being a primary caretaker is an enormous responsibility: medication schedules, nightly vigils, oxygen machines, bed pans, encouraging someone who has every reason to be discouraged - all in the face of personal exhaustion. Who can really know where it begins or where it ends? The terminally ill can linger for months despite any doctor’s prediction and the process of watching someone die is life-altering for you as well.
Helping Another Person Pass on is a Selfless Act. You Will Never be Prepared, but You Will Survive ... and You Will be Glad You Did
There was no question, despite my lack of "medical" experience, I was going to be there for my mother. And I was, in ways I never imagined. What I learned is not as important as what I gained. And what I gained is not as important as the peace my mother drew from my being there.
The process of dying is a journey of great depth and personal sacrifice for both you and your parent. It requires delicate handling, immense control, and a lot of adrenaline. Holding someone's hand until they pass requires dedication, endurance, and the realization that a lot more is happening than death itself. It is no doubt, one of the most difficult feats you will ever accomplish, but it is the right thing to do. It can be frightening, but it is something you owe yourself and your parent. At the same time, it will be rewarding in ways you never imagined.
I cannot give you a list of every thing to expect as you help your parent pass on, but I can tell you that you should embrace stepping into this role. Your angels will be there; you will not be alone. Fortunately, since we're not all nurses, hospice has organized material to help you understand death and will provide hands-on training on how to care for your dying parent. Moreover, hospice will give you allowances for keeping your parent comfortable that are not permitted or feasible in a nursing home setting. With a willing heart and a little hutzpah, this formidable task will fall into place.
Based on what I learned, here is a list of things that may help you prepare for helping your loved one pass from this life to the next:
The Medication Regimen
So that you are not operating blindly, try to obtain a solid medical history on your parent or at least a list of doctors, allergies, current medicines and medication protocols. Hospice can help if this turns into a HIPAA battle. It will be necessary to take over the medication regimen as a decline in brain function or physical strength occurs. You and your loved one may hope for a sudden death during sleep, but the likelihood is that a slow decline wrought with forgetfulness, dosage mishaps, incontinence, and conflict will prevail. The sooner you can gain control of the medication regimen, the sooner you will gain your parent's trust. Be timely and always tell them what you are giving them, what the dose is, and remind them what the medication is for. You can expect resistance at first, but be persistent. Tell them that if you are to learn how to be a good nurse, they must allow you to become one.
A Wide Range of Emotions
Some terminal patients concede death; some fight it. You can expect every range of emotion as you both come to terms with it. Depression, anger, sorrow, remembrance, fear. It will help to talk openly about all of these emotions without being pessimistic or fatalistic. Most terminally ill patients accept death with the reserved hope that a miracle may still happen! And miracles do still happen. But the reality with most terminally ill patients is that once they've reached the stage you are needed full-time, their time on earth is drawing to a close. I think my mother held out hope in the most optimistic way. But the day she took off her wedding and other rings and handed them to me, I knew she had finally agreed with the writing on the wall. Despite the wide range of emotions, begin early in the process talking openly about their wishes after death. Are there special conveyances? What do they want their funeral service and arrangements to look like? It is okay to cry as long as you don't lose your composure. It is even better to laugh as you remember the good times. If you sense a restlessness about a particular subject, simply ask about it. My mother had several life insurance policies she was paying out for her grandchildren. I could tell that it tortured her to believe they might lapse. Even though she had reached a point where she couldn't speak to me, I told her that I had paid these up for her, and I had. Her last financial act was to sign a check for the offering plate at her church. This also gave her peace as silly as it seemed to me. The point is, put yourself in your parent's shoes and look through their lens as you move through the latent stages of their life with them. It will help ease any tension between you and open up a line of communication where you can share emotions of every level. While facing death is not a good time to feel alone.
Misunderstandings of DNR Orders
Although you may be caring for your parent at home with the assistance of hospice care, emergency room trips or ambulance rides may occur. That's why a Do Not Resuscitate (DNR) Order is important. But let your parent make that decision. Some terminal patients are quick to say “don’t let me linger,” without fully understanding what that means. Fully explain that a DNR means health care providers will not provide cardiopulmonary resuscitation (CPR) if breathing stops or if the heart stops. It means no breathing machines. It doesn’t mean that a feeding tube can’t be placed if it assures comfort, but usually, once the death process has begun, feeding a patient by tube only aggravates the intestines and causes distress.
Mother Nature is the Best Mother Alive
The human body has an amazing way of slowly shutting down in terminal illness. Once your loved one has stopped eating and drinking, their body will gradually decline. Many patients lapse into a semi-comatose or comatose state. This is a good thing. It’s nature’s way of eliminating pain and preparing for death. That said, it is well-documented that even when patients are non-responsive, they sense and know your presence and can also hear what you are saying right up until the point of death. This means you always on duty! I knew my mother could hear me though she was silent and seemingly comatose in her last few days. Nonetheless, I talked to her and touched her and when she took her final breath, I was nowhere other than holding her hand.
The Saving Grace of Hospice
Again, if you are concerned about medical do’s and don’ts, don’t be. It will become as natural as having a child. Hospice will teach you everything you need to know and/or it will be contained in the hospice manual. But you must READ THE HOSPICE MANUAL. Read it while your parent is sleeping as you may become emotional. The manual will help you understand what is to befall both of you. It will explain what the death process looks like and sounds like. It will explain how you should respond to it. It will provide phone numbers for night and day emergencies. You will not have to worry about driving to and from the pharmacy for medication, nutritional support, or supplies. Hospice will assume the majority of this role on your behalf. You will be free to give your parent your undivided attention and constant support.
While you will not be required to make medical decisions, you will quickly learn what is in your parent’s best interest. For instance, my mother started out on oral morphine and developed gastrointestinal discomfort. The doctor was hesitant to prescribe Fentanyl patches. The hospice nurse was quickly on board with my plea and understood why. She was able to convince the doctor we needed to make a change in the interest of mom’s comfort. So establish a rapport with your hospice nurse and protect it. Changing nurses in mid-stream is not good for you or your loved one. Your parent will come to view the hospice nurse as family so don’t alienate him or her. Encourage that relationship because it's the last meaningful one your parent will have on earth. Conversely, if you have a hospice nurse that isn't passing muster or seems combative, call the supervisor. Get another. In this case, life truly is too short.
Support Comes from Likely and Unlikely Sources
Twelve weeks isn’t a magic number but it is generally the time a patient has left once he or she has crossed the bridge into hospice care. Family Medical Leave Act allows 12 weeks of time off work and I found my boss to be unimaginably supportive. But that's probably because I was honest with him early on about my intentions to care for my mother, and likewise, my intentions to return to my job as soon as practically possible. Give you boss as much notice as possible and you are likely to garner more support.
As it turned out, things happened much faster in my mother's case. She suffered from a very aggressive tumor and was gone in a few short weeks. But your loved one could linger for 12 or more weeks depending on their general health at the onset of their diagnosis. So you must allow yourself time to breathe and restore yourself, and to handle your personal affairs. In order to do that, you will need to rely on others. In order to do this, you must accept that your parent feels your love and knows you have been there for them. If you need to leave, simply communicate why you are leaving and when you will return, but allow friends and family to give you reprieves. Don’t discount the fact that many patients will wait for loved ones to leave before passing if you fear their passage in your absence. Consider that they simply may not want you to see them pass on.
My mother had an amazing church community who rallied to her side and my side with food, visitations, and countless other blessings. It would have been easy to say to them, “this is a private time,” or “now is not a good time.” In reality, this is all the time that is left, so keep your parent presentable but comfortable. Allow him or her visitors but keep them subdued and keep the visits reasonable. This gives you a break and it allows them time to say goodbye. This journey is not just you or your parent. It's for anyone who genuinely loved him/her. Even total strangers will rally to assist you because they understand the depth of the task you've chosen.
During the precious time we spent together, mom turned to me one day and said, “Thank you for what you are doing for me.” In reply I simply thanked her for being my mom. I reminded her that she was not a burden but a joy to me and that I would miss her sorely. These words give me a great sense of peace.
Avoid Conflict but Expect It
Familial conflict isn’t discretionary in a parent’s death; it is guaranteed. Even an only child will find themselves facing adverse opinions from a parent’s friends about how to, when, why, and what for. Your job as the primary caretaker is to know what your parent’s wishes are, what is medically best for them, and to stand your ground without stepping on toes. I had relatives who were nurses, and of course, they felt like they knew more. Perhaps they did. But I stayed with mom 24-7 so I understood things they didn't. For instance, when mom raised her legs it was because the osteoporosis in her hips was causing pain. I knew the morphine was causing her stomach upset. I knew a lot of things simply because I was there and paying avid attention. However, you must pick your battles. Arguing with siblings or others in front of a dying parent is not the right thing to do. Instead, ask to step out of the room and discuss it. If not, consider the source and the motivation. You might just want to let it ride. Avoid emotional break-downs and discourage them from others. I cried many times while mom slept. But while she was wake, I sucked it up and made her proud. After all, she was strong for me and my siblings. She endured many sleepless vigils watching over us. You can choke it back if you set your mind to it from the outset. It’s okay to tear up or gently cry as long as you can regain your composure. If you can’t, leave the room and return after some fresh air or a cold drink. Find humor where you can. Not certain how I would handle changing mom’s diaper, I told her one day, “I probably won't wipe your butt as well as you wiped mine but my intentions are good.” She was grateful and laughed. Humor goes a long way in times of adversity. They will appreciate it and you will need it.
Your parent’s death will never be something that you can grieve out of your system.
Rites of Passage
After mom passed, a co-worker who had just lost his parents described the process of losing a parent as a “passage”. I felt many things about my mother’s death, but the word "passage" puzzled me at first. I thought of her death as a ‘passage’ for her, but a ‘journey’ for me. I searched for the kind of grief that let me sob uncontrollably yet I could not find it. Perhaps I was merely demonstrating that I now had as much grace and dignity to carry-on as she had shown me in the process of passing-on. I yearned for some way to get the grief out of my system but there was no outlet. That’s when it occurred to me what my co-worker had meant by ‘passage.’
A passage, despite the implication of a destination, is actually a rite. To Western civilization, entering adulthood is a rite of passage. To the Maasai, killing a lion is a rite of passage. What separates grief from passage are two things: overcoming the fear of being alone and surviving the pain of doing it. You will do both. Losing a parent is a rite of passage and if you care for parent during their final days, hours, and minutes – it is a rite of passage with high honors.
This journey I had taken with my mother had left me standing at a door she had passed through and closed behind her. I realized that the grief of losing a parent was not something I would ever overcome. It was a part of who I was now. It changed me forever, and it will change you, but the change should be welcomed because in it's own way, it will prepare you for your own death. Moreover, it will give you the kind of peace that gives grief a countenance.
Life is Short and Precious
Death itself is always unpredictable as is the journey that leads one there. I couldn’t have predicted mom's time would have been so short, so I am fortunate that I made the decisions I did and I don't have to live with the guilt of making the wrong one. The message here is be prepared to act swiftly when your parent has reached this level of care. Spend time with your parent before and early in the hospice process. A sudden decline from which your parent will not recover is very unpredictable and then it is too late.