dying at home
My Mom turned sixty years old in April. I planned a surprise party for her that year not only to celebrate her birthday but to celebrate her seven year triumph over breast cancer. She was so happy that evening and VERY surprised (which was very hard to do to my Mom because she was very intune & a bit nosey) Our whole family and all of our friends came and we had a wonderful time.
We had been very aware of mom's illness and had many close calls prior. She had always managed to pull through and rebound.
When Mom called a family meeting that following June, she had my husand and I, my brother and his wife and my dad all attend. She had revealed that she was entering the end stage of her cancer and introduced us to her palitive care doctor and nurse. They were very compassionate and tried to explain this stage of my Mom's illness to an audiance that really were not as prepared and together as we all tried to pretend. Sure, we knew Mom had cancer...but we had become use to this...we were not ready for her death. We assumed that once again, she would pull through.
This was when Mom asked us how we all felt about her dying at home. At home for us means; the house which my brother and I were raised; the house she and my Dad lived in for over thirty years. We all agreed to her wishes and nodded our heads with enthusisiam while the palitive care team gave us the one hour run down in what would eventually take place (not that any of us thought it would be so soon.)......(well, maybe with the exception of my Mom)
Her decision to die at home had been a bit of a change in the very known well plans that my Mom had discussed with us over the course of her illness. (you see, my Mom was a bit controlling. She had mad a point of taking care of any details to do with her illness, care and possible death early on in her illness. She had always been aposed to dying at home.) So as you can imagine it was a shock to us when she revealed to us that day that she was now hoping to die at home.
My Dad, brother and I did not question the change in her wishes. After all she was the strong one. This lady had planned her own funeral three years after she was diagnoised. She was someone that always knew what she wanted and my family was prepared to commit to whatever our loving, strong and always confident Mother and Wife
wanted.
The next few weeks passed without any major changes in Mom's condition. She was walking, talking and otherwise herself until one night about two weeks before she passed. She had taken a bad turn and was suddenly very confused and weak. I had spoke to her on the telephone and she made lttle sense and was talking about monkeys and a lot of nonsense.
The following day my Dad told my brother and I that he was taking her to see my Grandpa, who lives about an hour away, the planned to stop at a seafood resturant on the way home. Soemthing inside me knew that she was making this trip so she could say goodbye to her father.
I was waiting at their house when the got home that evening. Mom was weak, but very chatty as the doctor had given her a prescription of ritalin to increase her energy. After visiting and traveling that day, her body was obviously exhuasted however, her mind and mouth were working overtime. I stayed late that night and Mom and I talked about a lot of things. A lot of memories and she confessed alot of fears that she had as a mother and a few regreats she had from my teenage years. After she fell asleep that night I left to return to my own home, to my own family and I felt an incredible feeling of angst and dread of things that where to come.
That was the last time my Mom ever walked or stood on her own. For the next three days I stayed at my folks place and sleep on the couch next to my Mom in her comfy chair that she loved. My Dad and I helped her up to the washroom and begged her to eat. She did her best. She scouled me when I cried and told me not to worry about her when she died.
The forth day the palitive care nurses came and we rented a hospital bed that we set up in the very family room that we had spent so many good and happy times in.
Once we got mom in to bed, the nurse educated my Dad and I on the best way to keep her comfortable. A long list of instructions; I did the only thing I could. I took notes, asked careful questions while my Dad and I did our best to prepare my Mom for death. My brother arrived within a few hours and any hope he held in his heart that Mom would once again pull through was immediatley distingushed by her failing condition, the presence of palitive care nurses and fragille emotional state of my father and I.
The palitive care nurses had given us a crash course in administrating injectable narcostics, morphine, anti convulsives and one in particular that we should give her if she becomes "too restless". They would be checking in with us every eight hours and on call if we needed them.
My Father nor my brother voulenteered to administer these drugs through the butterfly shunt the nurse had poked in her arm. In hind sight I think if I hadn't been taking notes and seeming so keen I would not have had to pay any attention to the nurses eyes that stared so hard into the the top of my head while I pretened to go over the information that I had written for a seventh time. I can still recall that dead silence. A silence that I felt I could hear pleads not only my Mom but also from my Dad and likely the nurse too. Begging me and my keen notebook to take on the responsibility of keeping my mom "comfortable" and taking charge of the kind of situation that was absolutley horrible.
I gave her the 4 injections. She seemed comfortable. I kept her mouth moist with the swabs. She slept peacefully until about three AM. My Dad and Brother had gone to bed and I slept on the couch in our family room beside Mom's rental hospital bed. I awoke to the frigtening sounds she was making. The we're not human sounding. She began to thrash around and I was scared.
I gave her the next round of injection and tried to calm her down. I told her that it was okay to die. That I was with her, that we we're all with her. I told her I loved her and that I was so lucky to have had such a good mother. I ran upstairs to get my Dad. Two seconds later we were both at her side as she screamed and moaned in pain. I gave her the anti convulsive injectable. It didn't help. My Dad climbed into the hospital bed and tried to hold her. He began to cry and tell her how much he loved her; he begged her to go. That she need not suffer anymore. He sobbed uncontrolably.
I gave her another anitconvulsive and Dad called the nurse.
Mom still tossed and turned and moaned, cried out and frailed.
Once the nurse arrive she admisistered more injectables. Finally Mom was calm. However, her wet breathing became louder as if it had thickened.
My brother woke up and his reacation still haunts me. He told me that her breathing was an indication of a drug induced overdose. He said he had read an biography of a musican that had overdosed and that the breathing sounds Mom was making sounded exactly as was explained in this stupid bio that he had read.
We sat with her and talked to her, we all told her how much she ment to us, how wonderful she was and how the only thing she could do now was to let go. We begged her to let go and die. We spoke of other family members and friends that had passed away and told her how happy our loved ones would be to have her in heaven.
But still she hung on.
Until shortly after ten AM when the Palitive care head nurse showed up. A nurse my Mom had thought very highly of and liked very much. In fact, my whole family liked and respected this woman, she was the nurse that had been meeting with my mom for the passed three years, ever since she was deamed terminal.
I was releived to see her, I sat down in the chair beside her rented hospital bed and Nurse Anne, gave Mom one last shot while she spoke to her. She told Mom that she had come to know her very well over the passed three years and liked her, "Donna, it is time to stop, you don't have to do this anymore. You don't have to fight. You have done the best you can do. You need to stop now."
And with that her breathing stopped for a moment. Nurse Anne told me that she was going and to wake my Dad and brother. I ran and told them to come and quickly ran back to her bedside.
She took her last breath with us all at her side.
It was the hardest thing I have ever experienced. I am still waiting for the hurt to go away.
My advice is to try to prepare you and yours the best you can and make the decision where you die based on your own gut feelings. You know your family better than anyone. Trust your own judgement.
Comments
-
Thank you for sharing your story.
In July 2007 my Dad died at home after a two year battle with lung/renal cell cancer, while I was bald and in the middle of chemo, four days after my 41st birthday. It was a very, very hard time. On my birthday that year he and I watched Armagedden together while his wife took the night off. Amazing the difference 4 days can make.
(((hugs)))
-
My mother also passed in the wonderful care of Hospice Nurses and Doctors. August 2nd was the 6th year anniversary. She passed from pancreatic cancer...having briefly spoken to us years before about something "in situ" in her breast, and some medicine she really didn't need to take (tamoxifen,) but she did for awhile. Grandma had passed from ovarian cancer many years before, perhaps something in her breast before...? Oh how I wished I had listened better...
I had just been nursed back to health by my mother from my incisional hernia and nerve entrapments...she was most likely suffereing in silence while helping me. I did the best I could...so grateful when Hospice took over so I could just be the grieving daughter that I was. We came and went at any hour to the inpatient Hospice in Arlington Virginia. My dad wouldn't leave her side and he is disabled, so my Sister and I took turns helping them both.
I thank God for the help we received, and we all noticed how beautiful and youthful she looked at the end. As if she was 30 years younger..and yes there were very difficult times as well. Very hard on the memory. But I know she would want us to remember her when she was comfortable.
I see her every day in the flowers and birds. I look at nature through her eyes, with an intense appreciation for nature and the spirit within.
Hospice also offers grief counseling, which I glady participated in.
Katzvanrann, your story in very personal and very true. I have been there, trying to be a Nurse to my mother, and just wanting to be a child again...with my mother shielding me from life's realities. They are at peace now, and it is because of the beautiful Hospice workers, who are truly special.
Thanks for sharing (and maybe reading...)
Traci
traci
-
Katzvaran; your story is simply beautiful and two tears rolled down each of my cheeks as I read it. One for my dad and one for my aunt (they were brother and sister) who both entered eternal rest from their own homes. My brother is a doctor and I am a nurse. During my dad's last hrs with the "death rattle" my brother called me at work to ask if he should administer the last morphine dose. My brother did not want to make the decision. He was being a son; not a doctor. I heard my father shout "mommy" (his mom died in 1954) and I told my brother that dad was already exiting this world and we should follow his lead. During his last wks at home in his hospital bed; my two kids (then age 3 and 8) played with him and he smiled immensely. My personal belief, after witnessing so many deaths at work, is that they develop a certain "radiance" b/f they go into the last stages. They are envisioning the other side. My dad kept pointing out my younger daughter's red hair to some imaginary person at his bedside. His deceased mom had been a red head. He beamed with pride.
My aunt spoke to about 25 people the night she died. she had no children of her own, so we all were her children. Her bright baby blues were elated, as each of us told her how much we loved her. Her breathing was labored and this time it was my sister (another RN) who used morphine to help ease my auntie's transition.
Feels so good to write about this. We did the best we could. No regrets.
-
I totally feel for you, My husband of almost five years, who was the love of my life, came down with cancer of the blood vessels, the most rare in the world, It was the hardest thing I have ever done was to give him morphine, knowing I would never be ever to hear him say I love you again. I so feel your pain. And now I have had breast cancer, surgery, radiation and I know I am going down. I only have enough money to support myself for two more months here at my sisters place so I am looking for a shelter to live out my life in. I have two great kids and two grandkids, but I DO NOT want them to know how hard this is and I really need to leave them out of my death because their dad (my first husband) shot himself in the head, and they had to handle all that. But Ladyl, you go, you are good and you will make it!!!!! Love from WINTER HAVEN FL
-
Thank you for sharing. It is a hard decision for those of us that face a terminal diagnosis. My question to you? Are you glad that she died at home?
I smiled when you put in there "my mom is very controlling" because I am the same way. I too have made my funeral wishes also 2 years ago.
-
Katz--I am so glad you shared your story. Sharing in the death of one so close, your mom, is traumatic. My mom died at home of ovarian cancer 5 years ago and I was with her daily for the final 3 weeks of her life. I admire your mother for being so open with all of you about her wishes about her death--although it is so traumatic for her loved ones. My mom's death came so suddenly, I don't think she nor any of us really knew she was dying until the last week. We were rushing around getting hospice arranged; my poor dad thought we were "giving up" on her, but thank God we got hospice in place for that time. I don't know what we would have done without their help and guidance.
Death is so difficult and the pain is so deep. Over time, the pain of her death is not as great but I still miss my mom deeply. I think watching my mom die was traumatic for me.
What you went through with your mom and all you did for her was wonderful, loving and amazing! You are such a loving daughter! What a comfort it must have been for her to have had you by her side 24/7. Be gentle and patient with yourself. Grief is a strange experience, very unique to each person. Allow yourself the time and whatever experiences you need to go through it.
My heart reaches out to you. I hope you find some comfort each day and the courage to feel the pain of your grief.
-
You're a strong lady and I admire what you did for your Mom so much.
I'm a five year cancer survivor but lost my Mum suddenly eight weeks ago, I know it was the best way for her to go, but would have loved a chance to say goodbye.
However, should I reach the stage of terminal cancer I'll choose to die in hospital rather than put my children through what you went through, I really am so sorry.
((((((hugs)))))
-
I helped my Mom to pass at home after her battle with breast cancer. Thank you for sharing your story, mine was similar but thankfully simpler. My mother went very quickly and with out pain. It will forever change the way I view the world, my life, everything. I wouldn't change a thing- except that she would never have had cancer in the first place. I think she deserved to pass in her own bed, she did everything for me my whole life, she was/is the best mother I could have ever hoped for,this was the least I could do for her.
Tricia- I was never "put through" anything. Losing my mom would have happened no matter what, at least this way I could try to show her how much I love her, it was NEVER a burden.
-
I agree with Laurie. It is not a burden when your mom(MIL) or loved one dies at home. It was the best chance to be there. My MIL planned for at home and unfortunately did spend 12 hours at the hospital before passing but I loved every minute with her at her home and I wish it could have all been at home instead of spending that last 12 hours in a noisy uncomfortable hospital.
Note to all: Be proactive in your planning for whatever and make sure things are started early enough to be able to be implemented the way you wish. Particularly, make sure pain management is set up sufficiently. I have mine planned thanks to my MIL.
-
I have thought long and hard on this subject. I fully believe that it would be too traumatic for everyone if I died at home. I have planned my palliative care (and then didnt need it when they thought I would). However even after 4 yrs, my decision remains the same. It will not be any easier on the family but it will be bad enough packing up my room.... passing that door and remembering that I died there may be too much for them. We have been fortunate that we could discuss this as a family and get everyone's imput. But fate (or in our house Murphy's Law) may change everything.
-
My mom died at home when living with me and my husband. I was so glad that we could be together with the help of hospice. It was a little weird for awhile with her room and the house in general and we ended up moving out of the house a few months later, but just because we were able to buy instead of continuing to rent. I do think about it for me and want to die at home, but I worry about my husband and how the room will feel when I'm gone. It's something that we should have a candid discussion about for sure. What I'm trying to remember/teach myself is that dying is a natural thing, so it seems much better to do it at home surrounded by the environment that we have created for ourselves than to die in a sterile hospital full of strangers. At least that's how I feel today. Who knows what the future brings....
-
Laurie
I just meant I was sorry Katz lost her Mom this way, and was'nt suggesting for a moment it was a burden!
For me personally, I think a hospital or hospice is the way to go, but as has already been said, its such a very personal decision.
Laurie, for what its worth, I adored my Mum and would have gladly did what you did, sadly we think it was her heart that gave in when she was alone, and I'd give anything to have had the chance to say goodbye and would have certainly done as you did for a wonderful Mother:)
Tricia x
-
I have already questioned my husband on if he felt he could sleep in our room after my passing. I have not only him but we have 3 dogs and 2 cats that I love dearly and do not want to leave them either. I am praying that my kids will be able to be with me in the final hours as they live quite a distance apart from us (one in SF and the other in RI plus my 2 grandkids in RI) I have a friend who is living with us with her almost 2 year old...my 'step granddaughter' and I want her to be near. I want to contact hospice in the next couple of weeks with my one minister and my husband even though things are still a bit early.
I have my memorial service all completed and in the hands of my one minister (I am going to have my memorial service intiatied over by 2 ministers). I too am demanding as having been a music teacher for years which meant years and years of programs. Then I went onto teaching private voice lessons and became a director of many musicals. My husband and kids realize that this is my last 'big production' and have not dreamed of trying to 'help' me with it. I have had an original piece of music written for me by a musical prodigidy I have worked with for years (piano). My after memorial service PARTY is assigned to 2 friends who know exactly what to do...food first, fun second and NO CRYING! I even have my urn made by a friend of mine who is a potter and who is making 2 smaller ones for my kids...as gifts.
I am donating my body to science and when they are done with what they need they will creamate the remains and send them back to my husband who will give some to the kids and keep the rest.
I do not expect any thing to happen for a minimum of 6 mos. I am going to SF to visit my daughter and see two shows she is in (she is a singer, dancer and actor) then hope to see my grandkids next. Hopefully I will be able to make it to Balto. my hometown (money being the problem...the SF trip was gifted to me by an angel). I am having many out of town friends making every effort to see me while I am still 'healthy' and and loving the care I am receiving.
I worry about the pain at the end. Currently I use a pain patch and dilaudin for break through pain so I am really in good shape pain wise. I will need to emphasize on hospice that plenty of pain meds is a must. I have amazing chemo nurses and pray that the hospice nurses are just half as good as my chemo nurses. If so, then I shall be fine. My pallative care is going well and is being given to me by my onc nurses...obviously with no chemo...just hydration, nausea meds when needed, headache meds when needed, and benedryl and ativan by iv so that I can get a good sleep.
I will keep you up to date on how things are going. Right now I feel so much better than I had. I do need inhalers for my whatever and sometimes oxygen but that is simple enough. What I ask for most of all are prayers. Prayers are to me the best medicine there is and are most appreciated.
-
Pee, I love you! I love how organized you are - your last great production sounds perfect. Joyful. Your potter friend making the urns is perfect. And I'm relieved that your production won't be on for quite a while. I don't want to let you go!!! So smart to have everything organized early so you can enjoy life. Your visit to SF sounds wonderful. Lots of love coming your way,
Elizabeth
-
Pee - I hope to be as strong and organized as you. I have heard the combo of fentanyl & versed make you feel like you are floating on a cloud and is used in hospice situations, so I have made sure my family knows this is my medication of choice. Virtual hugs and love to you! lisa
-
Pee
Lots and Lots of prayers for you. I hope you stick around feeling good and can soak up so many wonderful moments with your children and grandchildren. I am sure there is a great amount of relief in having arrangements made so you can concentrate on enjoying your life. We are all here for you.
With Love
Jennifer
-
Pee,
I happy for you that you have hopefully left yourself time to visit your loved ones and hopefully get back to Baltimore. I've been going there for a clinical trial and it was not at all what I expected. I really like it. Hopefully I'll feel better enough next cycle to explore the city. Enjoy.
Love, hugs, kisses.
Claire
-
Hi Pee!
A trip sounds perfect! I have been to San Francisco several times, and have always enjoyed the city tremendously. Spending time with your daughter and grands seems perfect.
Tell us about Balto. Like where is that? Do you still have family there? How long has it been since you have visited?
Beautiful sunshine here today. Spring is desperately trying to make an appearance.
*susan*
-
Pee
You are so organized and I hope that I can have the same strength that you have when it's time for me to organize my Party (memorial). Have a wonderful trip and enjoy visiting with your daughter.
Jenn
-
Pee,
May we all be as organized as you are. It must be such a relief for you to move forward, knowing that all is in place. I hope you are able to travel and do everything you have planned. You certainly deserve it. Your strength is an inspiration.
Love and hugs,
Lane
-
Pee, you are a very strong lady and I admire you so much for organizing everything you have, as you have.
My Mom came within a hair's breath of dying from the chemo's. She stopped eating, stopped drinking and slept all the time - all the end stage signs were present for her passing and yet she managed to say "I have to get worse before I get better". None of us believed her at all - not even palliative care.
One day she accepted a cup of tea from my sister and then a little jelly and icecream. Very soon she was eating almost normally and drinking. Away from chemo and all the medical procedures my Mom experiences a different quality of life, but she said to me 'its still life' and she enjoys it. She does not regret her decision to stop treatment and go palliative in the least. She is on oxygen 24/7 but manages the odd few hours out with portable oxygen and then takes a couple of days to get over it - but she still loves life and has accepted the change of QOL.
I know that for her this will not go on forever, but I know she is in no pain, is well loved and has organized everything as you have. She takes time out for each of us to show her love so deeply and her hugs are so tight they will last for the rest of my life.
Pee, reading through your posts over time it seems yours and my Mom's symptoms run almost paralell on many levels [please don't think the oxygen for you will be 24/7 - my Mom has only one lung], so I don't share what I have lightly or to scare you - but to tell you that even where my Mom is at - she's pain free and happy in her way. It isn't for everyone to be so organized, but it is for her and clearly for you.
I was the one who asked where you had gone. I hope that did not upset you in any way.
I wish I could give you a real hug but am sure you have many at home to give you those. I admire you, sweet lady.
Hugs, Zeana
-
Pee, I wish you many many happy painless days. I smiled when I read about your plans, I have done and will do the same! I guess it is one advantage that we have?
Janis
-
Pee,
I hope you get to go on all your trips and visits feeling great and pain free.
You are a wonderful, strong woman!
Katie -
Thinking of you, Pee, and hoping you are busy making wonderful plans!
Lane
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team