This is a personal story about caring for a dying parent. The death of a parent is inevitable, but we don’t talk about it. So let’s do that. Let’s talk about it.
My name is Sher Bailey and I’m going to share with you what it feels like to care for a dying parent at the end of their life. This will be a painful post to write, and it may be painful for you to read. But it’s an important conversation to have with yourself before it happens. If you’ve already lost a parent, I encourage you to read on and share your personal experiences if you’d like.
Caring for a Dying Parent In Their Last Days
There is no guidebook here. There are no rules a dying parent has to abide by, and none for you either. Death is a very personal experience between the dying and their loved ones. This is my personal experience. I hope you can take something from it that will help when you walk this path.
Before I begin, I want you to know the last thing my mother said to me as she was moving from consciousness to unconsciousness. “I wish I’d been happier.”
Without question, those 5 words are some of the most painful, life-changing things anyone has ever said to me. I hope you’ll remember them, as I do, and take whatever action you need to take in your own life so that they won’t be your last.
Their death process is your experience, too.
Your parent is dying, but as you walk with them you’ll realize it’s almost as much about you as about them. Your parents brought you into this life and so as they leave it, you will undergo a change that gets to the very core of who you are. Be attentive. Listen to their stories. Commit their words to heart.
There will be things your parent says or does during this time that will come out of nowhere and break your heart. It could be a sweet story they remember, or it could be something completely honest and raw, like my Mother’s words. The filters we all try to have as we walk through life don’t matter to the dying. If you’re afraid you’ll forget, write them down.
You become the parent, and they the child.
I took care of her, changed her, bathed her, fed her. I stroked her forehead and calmed her anxiety. I gave her medicine and held bottles of water while she sipped.
The circle of life is never more evident as when you become the one your dying parent looks to for comfort. When they are afraid, you are there to comfort them. You’ll say a lot of things you’re not sure about, but you do the best you can. You can’t get this wrong if your choices come from a place of love.
You’ll find yourself watching them as they sleep.
Mother slept while I sat at her bedside. She liked knowing I was there, I could tell by the look in her eyes. Honestly, I was afraid to move for fear she’d wake up. It was as though I was back at my daughter’s crib in that respect.
Watching her chest move up and down was comforting to me. I wouldn’t have been anywhere else.
Their confusion will be hard.
There were strong meds which caused her confusion, but it was more than that. Mother’s mind was elsewhere. Sometimes she knew where she was, and others she didn’t. I went wherever her mind went. If she was in a garden, I went with her there. If she was talking to my brother who hadn’t yet arrived, I confirmed to her that he was in fact in the house. I never tried to correct her.
Your dying parent will move back and forth between this world and the next.
Dying is work, and Mother had a lot of work to do. I would see and hear her talking to people not meant for my eyes. And then she’d be present with me again, but only for brief interactions.
Sometimes she’d look in a particular part of the room and explain what was there. “There is a pretty lady with lights all around her, ” she told me. “There are lights everywhere!” she said as she waved her arms around to show me how many there were.
It becomes plain to see that a body is only a vessel.
As her body weakened and stopped functioning normally, I had to come to terms with what that looks like. When you sit with your parent as they are preparing for their journey, there are almost imperceivable little changes that happen to their physical body. And then suddenly, you see what’s happened in its entirety and it takes your breath a little.
You may have relationship issues to deal with.
Our dynamic was not good. I was a great disappointment to her, and it was easy for her to tell me so. I remember the last time she sat in her wheelchair. I put my head on her lap and sobbed harder than I’ve ever cried or seen anyone cry.
My sobs were guttural and uncontrollable, and she put her hand on my head to pat it as best she could. In the midst of my anguish, I cried out to her again and again, “I’m so sorry, Mother. I’m so sorry I was a bad daughter.”
I continue to struggle with this, to be honest. I wish I had a checklist of good things I’d done alongside the “bad” things. Truth is it probably wouldn’t matter. When your heart breaks, you can stitch it up. But, the scar will always be there.
When an estranged parent dies, they get to leave the demons that haunted them on Earth behind. Ours stay with us, always at the ready to come out and force remembering.
When your parent is dying, you realize you are not immortal.
I watched death come for her, settle in her room, and wait quietly until she was ready. It didn’t wrestle her life away from her. Sometimes I hoped my death would be like hers. When it got more challenging, I hoped it wouldn’t.
When a parent dies you can’t help but think of your own death someday. You wonder if this is how it will go for you, and what will happen with your own children if you have any. Will they be there with you? What can you do to make it less traumatic for them?
You’ll search for yourself in your dying parent’s face.
That’s what I did. Her nose was my nose. Her smile, crooked on one side so that lipstick never looked quite right, was my smile. Her small hands were my hands, although hers were painfully gnarled by arthritis and were adorned by a single ring she wore on her thumb.
I remembered being in church as a little girl, Mother holding my little fingers in hers as our Southern Baptist preacher railed against the devil from his pulpit. Her nails were always long and manicured and I loved running my fingers across them. I dreamed of the day I’d have long, red nails, too.
The exhaustion will be merciless.
My family and the hospice team were adamant that I eat and sleep, and they told me that as often as they could get the words out. That seemed impossibly ridiculous to me. How could I sleep? What if she looked over at the chair beside her bed and I wasn’t there? Even worse, what if she passed away while I was in bed?
I would tell you not to do what I did, but you will. People will want you to rest, and you should listen to them. But, you won’t. I finally made my husband promise he would sit by her bed, watching her chest rising and falling, so I could take a 3-hour nap. He was under strict instruction to wake me if the slightest thing changed. You should try and do the same.
Be still.
You don’t have to talk if you don’t want to. Your dying parent will feel your spirit beside them and know they are in a safe space and well-loved.
I spent time letting my eyes settle on everything about her. Her face, her smile, the way her hair looked. I knew it would be my last looks, my last chance to see her in life.
Afterward.
I did my best. That’s all I can say. You’ll do your best.
Remember, you were present. You were filled with love. You were patient. Still, it won’t feel like enough.
There is no shortcut to get through this pain. If you can get to a therapist, I encourage you to do it. Lean on your loved ones as much as possible. Accept help.
After two years I can still hear the way she said my name. I worry I won’t be able to hear it forever.
This is the obituary I wrote about my mother after she died. She’d want me to share it. Mother loved being the center of attention. 🙂 I hope you’ll tell me about your mom or dad. I really want to read about your journey.
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812 comments on “Caring for a Dying Parent In Their Last Days – a Personal Story”
I sobbed through reading this , I took a photo very similar of me holding my beautiful dads hand as we sat for 12 hrs in A & E after he collapsed on the kitchen floor 3 weeks ago ! Because of Covid restrictions only one person could be with you, I’m so pleased I could be with you holding your hand, I never wanted to let go xx when they put you on end of life we could stay 24/7 so me & my sister did! By your side till the end, 2 weeks now & I still can not imagine life with out you by my side I’m so pleased we spent that time with you & completely know you knew we were there with you till you took your last breath, I miss you desperately, life is so hard with out you in it xx
Thank you for this blog. My mama passed in March this year. The pain is raw. I was lucky we butted heads when o was younger bit but grew into such a wonderful relationship. Not perfect who is? We were so much alike! I had many scares over the last 20 years that we would loose her and she would rally. This time I knew in my gut that this was it. I hastily packed up my kids in Maryland and headed home to Ohio. Second day I was there I thought it was another false alarm then things went down hill. Being medical POA I had to make the hardest decisions of my life when my mom is screaming at me saying “you said you would make it stop”. I spent many houses the next day confirming she was done and wanted hospice. The last coherent thing she said hurt me to my core but I know she was not herself. I am having trouble adjusting to my person who ALWAYS been there is gone. I had to put her in hospice and come home to MD after I did it. I knew there was a chance I would not be there for end. I got a call 30 minutes 3 days later before I was heading back out that she had passed. I have not had time mourn her death really bc I am trying to settle her estate and take care of a stepfather who has dementia and in assisted living. I am trying to do what she wanted. I miss her every day and always will. I was lucky, I got that mama. I hope one day my children feel the same. Thank you again for the blog ❤️
This is exactly how I felt when my Mom died last year. Every emotion, every felling. I took care of my Mom myself for over 25 years and I was still not ready to let her go. I still fell it was my fault that I could. It keep her with me, as hard as I tried. I still look for her and I will always miss her “Good morning darling” and “I love you” at night. I cannot get past this, maybe I never will. Thank you for your words.
My Mom died on the day of all 7s. That’s what I always call it…7/7/77. It was a lucky day for her, not so much for me. I wasn’t with her when she died. My cousin was though. I was glad that she wasn’t alone when she left this world. I was by her bedside the night before. She looked so calm and at peace that I thought…Just suppose she comes out of this and gets better. She looked like she could. She was a tough old bird. But when I started down the hallway to her room the next day, my cousin met me and gave me the news of her passing. I remember sinking to the floor and just sobbing uncontrollably. I don’t think I had ever felt so very alone in this world. I wish I had been a better daughter for her…more attentive, kinder, helpful. She had always been my rock, my safe place to land. I am crying as I write this some 45 years later. I guess there are some things you never get over. My Mom’s death is Number 1 on that list for me.
I was my mother’s caregiver for a year with her battle withe dementia she was only 65 I did everything you talk about day in and out I even got her dressed and cleaned up before the funeral hone came and took her body away. I will never forget that day. It been a year in 14 days she would only want me to do things for her then other days I was trying to hurt her she would say amd them days would break my heart bit I knew it wasn’t my mom saying that it was the disease still didn’t make it any easier thank you for youe story
My mom just entered hospice. My parents live in MI but I currently live in VA with my husband and kids. At least that was until my mom was diagnosed with cancer 6 months ago. Having raised (they are now 22 & 19) 2 special needs kids I have the skills to help my dad navigate this journey. We are now towards the end and I am so overwhelmed. I sit and watch her slowly die everyday and it is breaking my heart. It’s a heartbreak that is so hard to explain. I know it’s just going to get worse as the time goes on. We are now writing her obit and planning her funeral. I’m not sure I’m ready to watch her pass, but I don’t have much of a choice. Hearing her tell me I abandoned her when I left for the Army at 20 killed me. My dad said she is toughest on me and none of us are quite sure why. My sister helps, kind of. She comes in from Arizona and stays for about 4 days at a time. I do go home and see my husband and kids for about a week about once a month, but with hospice I think im here for good now until the end. My mom is 1 of 13 and trying to get her siblings to understand this is not about them is wearing me out. I had to find a job for each of them at her funeral. I had to make sure they were all mentioned in her obit. I have to let them come see her even when I know she is way too tired and has nurses coming the next day. I know a lot of people dont have family but is there a thing as too much family? She will be the first one of the 13 to pass and so I think all my cousins will have it a little easier. Plainly this just sucks all around. I am so heartbroken. I’m now going to bed and get to do this all over again tomorrow. Lucky Me. Thank you for telling your story and giving us all a safe space to tell ours.
my story is basically the same as yours. when i thanked her for not aborting me, the dynamics changed…greatly. she was so tired all thru the years but i took as she hated me. prayers for you, dear heart. my time is now with hospice. my lawyer is my executor and poa, my kids (in their 50’s) jobs are to bring whatever they want to the table. my job will be sending winning lottery numbers. try to rest, it does suck big time, but this too shall pass.
Mom passed Dec 1 2021. Colon cancer. She was 91. Lived with me and daughter since diagnosis in Sept 2021 on in home hospice. I took care of her until the end and luckily, work from home. She was a good Mom and I’m suffering. She was loving. Dad passed 2013 and I’m not over his passing either! I’m an only child. Your story has me in tears, as I agree with you. I have my daughter, she’s 30 and I love her. BUT, she’s not Mom, who understood me. I’m able to function l, as I have to. But my heart is broken and I feel so alone. Mom knew this and held on, but we had to tell her to go to Daddy and that we’d be ok. I lied!!! But I understood what I had to say for her to be at peace. I would stare at her while she was awake and slept. My daughter and her are my girls. Now, I drink in pictures of when I was a child. I look at me, knowing that in 50 or so years, I would be grief stricken over the loss of Mommy and Daddy. This grown up stuff sucks!
My 36 year old daughter sent me this post last night because it’s coming up on my mother’s one year death anniversary and I’m having a lot of anxiety as the day approaches. I immediately felt a connection to this blog and I decided to share my blog I wrote after her death. I hope my blog helps others to. Thank you in advance to reading my pain and sorrow:
Part 1: End of Life Stages, Palliative and Hospice Care
Almost everyone was glad to see the year 2020 come to an end as we hoped for a better, brighter and prosperous year in 2021. Sadly this year has started out to be worse because several friends and family members have been plagued with illnesses including my beloved mother, Sandra Young. On January 15, 2021 my mother was admitted to the hospital for severe fluid retention and later diagnosed with leaky heart valves syndrome then end of life congestive heart failure
(aka CHF). The first thought that runs through your mind is WTF then you start googling and researching everything you can about the medical terminology and what exactly it means for your loved one.
After the doctors have provided a high level summary and very “glossed over” review; families begin the process of preparing for a long and daunting road to recovery or sustaining quality of life. But what do you do when that too is deemed short-term and the rug is pulled out from underneath you?
Enter stage left… Palliative Care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex illness. Within the published literature, many definitions of palliative care exist; most notably, the World Health Organization describes palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.” In the past, palliative care was a disease specific approach, but today the healthcare organizations take a more broad approach, that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness.
This option was discussed and carefully coordinated with my mom’s medical team however in the days leading up to her hospital discharge; her labs and test results took a turn for the worse and we never got the chance to implement this type of care.
Enter stage right… Hospice Care is a type of health care that focuses on the palliation of a terminally ill patient’s pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering. Hospice care provides an alternative to therapies focused on life-prolonging measures that may be arduous, likely to cause more symptoms, or are not aligned with a person’s goals.
My mother was in the hospital for almost three weeks and due to strict Covid-19 restrictions and guidelines, the hospital had a No Visitors policy that practically disseminated her mental health and absolute need to be surrounded by family and loved ones. It is my opinion that this played more of a prominent role in her health decline than the illness itself. Fast forward and 30 hours after being discharged she started retaining water again and we drove her back to the hospital but this time she refused to be re-admitted unless a family member was allowed to be present. Her exact words were “I will sacrifice myself in order to be with my family”. I spoke with the lead doctor and she sympathetically explained the seriousness of my mother’s illness and recommended we honor her wishes to take her home. After careful deliberation, my sisters and I agreed we would absolutely NOT leave her alone again and made the very real and agonizing decision to take her home by ambulance on hospice care.
Once the news spread we were greeted by a Hero’s aka Matriarch’s welcome home posse comprised of a couple dozen family members and friends. My mother was surprised and said “she felt like someone special” not realizing she was someone special to so many people. We developed a care plan, addressed her needs as well as identifying external resources and everything was good…the first week. Although she didn’t have much of an appetite, she requested specific meals for my sister to prepare, she engaged in meaningful conversations with visitors and walked around her apartment for exercise after being discharged from the hospital. To be clear, according to medical terminology, a doctor will recommend hospice care if a patient has six months or less to live. Everyone had a positive attitude and we were grateful to have her home however the second week proved to be much more challenging as her health rapidly declined.
Hindsight is 20/20 and you tend to overlook the obvious when your not willing to accept the reality of the situation. The second week of hospice literally followed the pages in the book they provided about what to “expect” at the end of life. Still your mind plays tricks on you and your thinking this doesn’t apply to my situation or only 4 of 5 things from the book are coming to fruition. Your mind doesn’t let you fully process what’s happening because it knows you are not ready to handle whatever comes next. Step by step, slowly we turn…a blind eye to the truth. For the next week everyday her health drastically declined and everyday it was something different and everyday we thought things would hopefully get better tomorrow.
Part 2: When End of Life Approaches and A Mother Passes Away
The last week of my mother’s life was as tragic as it gets for me and I witnessed her become someone she was not and somethings that were never meant to be or happen…actually came to past. For a person to be so fit, active, mentally sharp as a tack and vibrant; it was devastating to see this illness ravish her mind and body so quickly. What she once took pride in (her intelligence) quickly became a humbling experience she had no control over but tried her best to maintain her dignity. Her speech became robotic as she grasps onto the little resemblance of her former self. She recited a phrase stating “I took care of my family and now it’s time for you to take care of me”.
As the days went by my mother became weaker and weaker and less vocal until she could no longer support her own weight (77 lbs.) and next lost function of her faculties then finally could no longer swallow or verbalize her thoughts. I don’t know if she was aware of what was going on but I hope and pray she wasn’t because that was not who she was as a person. She was a very independent woman with an insatiable appetite for reading. I thank God for the additional five weeks He sustained her life because she confided in me that she honestly thought she was not going to make it on January 15th when she went to the ER. I asked God to let me make it to Chicago in time to see her and He did that, then I asked Him for a little more time with her while she was on hospice and He did that too so I can’t complain; thank you Father. I say all this now but when I was actually going through the process I wished for miracles, set unrealistic goals and lived in the moment of denial. As I said before, the brain only allows you to process what you can handle before it shuts down and I am grateful for its internal coping mechanism because if I was actually forced to accept reality in that moment of time, I would’ve had a nervous breakdown. I think we get caught up in the sense of false hope although we are aware of the outcome however we condition ourselves to hold on to that false hope anyway. In the back of my mind I rationalized she wasn’t that sick and she would magically get better once she was surrounded by loved ones.
In the early morning hours of February 20, 2021 my mother passed away and the mourning and grieving phase officially began. From that point on it felt like I was in a daze and going through the motions of notifying family or preparing and planning her services. One day rolled into the next and before you knew it we were at the cemetery and I knew I would never physically see her smiling face again. The loss is so great and incomprehensible for which you can’t describe the ache and sorrow deep within your heart and the mere thought of the loss brings tears to my eyes. Initially my empathy was for her grandchildren because they loved Granny but now I feel sorry for myself and constantly find myself throwing pity parties on a daily basis. My world revolved around my mother and I did everything within my power to make her happy and literally tried to give her whatever she asked for. She was my everything and I was her everything. I realize now that I’m not the only person that suffered a great loss that day and the world is not a better place without her in it. Until the sorrow subsides I will remain selfish and in my feelings by disagreeing with the common words of comfort that “she is in a better place” because what could be better than being here with family?
Nothing but kind, sincere, honest and true words were said about my mother at her funeral because she made everyone feel like they were special to her. I am thankful my grandchildren had the pleasure of feeling her love and it’s unfortunate that their children will never have the chance to meet her but I know her blood, sweat and tears will run through their veins just as mine will. The loss of a mother, child or any life that is dear to your heart is one of the most heart wrenching things to experience and I know I’m not alone but without my mom it sure feels like it.
This brought back so many memories I just experienced with my mom . I took care of her for 10 years at home while working full time many she was battling dementia and many other illnesses The last 4/5 years was the hardest as we started with palliative care and moved on to hospice she past a year ago . The hardest part at home with her and seeing the decline and her giving up . I feel I never did enough for her .
I watched my mother as she was waiting to pass knowing that that this was the last thing she would want. Never did a person love life as much as my mom and neither did any person I have ever known love me as much. She has been gone for 27 years now and not one day have I not missed her. This last year, I have had the experience of watching my children expecting me to die, and knowing the pain this causes in your soul, I made a conscious decision to fight the dying of the light and survive.
I have sobbed my way through reading this account and my memories and wanted to share how grateful I am that I was present in all those terribly beautiful moments, and grateful too that I have been granted a life extension so I can hopefully make more good memories to help sustain my loved ones when I am no longer physically present.
My family all know I will always be close by whenever they need a Mum moment. Let that be your hope for your loved ones…that they will always be able to ‘feel’ you nearby when they most need you!