The night my husband died, I slept beside his corpse in our bed. All night. This wasn’t exactly by choice: the funeral home did not retrieve bodies after 8 p.m., and there was no other bed available for me to sleep in, as all our children were home to help care for their father.
I tell this story whenever I discuss the realities of dying at home. Even as a physician assistant, I did not appreciate the challenges – or the immense rewards – of caring for my husband at home until his death.
According to a 2014 Harris/Decima survey, of those Canadians who express a preference for where they want to die, 75 percent say they want to die at home, surrounded by loved ones. Interestingly, another Canadian study found that those loved ones aren’t quite as keen on the experience: half of the patients who said they wanted to die at home had family members who hoped the death would take place in an institution, like a palliative care unit. No matter: The majority (about 65 percent) die in a hospital, which isn’t anybody’s first choice.
The palliative care and hospice community often use this data to advocate for more government funding of community supports, such as personal support workers, to help people die at home. And they’re right that home care and palliative care access is too uneven across Canada and in urgent need of more funding.
But what we don’t understand is how many of these hospitalizations at the end of life could be diverted with more nursing, more personal support workers, more respite for family caregivers. I believe that without better education around what’s involved in dying at home, extra resources won’t be enough.
Dying is messy. It shouldn’t have to be painful anymore, though in some cases, only deep sedation can relieve the worst pain. But pain aside, there is no getting around the progressive weakness, the loss of appetite, the fluctuating level of consciousness, the need for diapers or a catheter, and eventually, the shallow, laboured breathing. None of this has to be distressing for the patient, who can, if needed, be heavily drugged or even sedated. But it can be extremely distressing for family members to witness, and it can go on for days and, in some cases, weeks.
When I worked as a physician assistant in the emergency department, I saw many patients brought in by ambulance in those last stages of their disease. When I spoke to the family members, it was often clear they were overwhelmed by very predictable symptoms. But no one had laid it all out for them before. They weren’t looking for miracles – they accepted that death was inevitable – but they felt unprepared and untrained for the burden of watching their loved one struggle to breathe, to communicate, to just let go. Sometimes a spouse confessed that as the husband or wife’s death neared, they worried they’d always associate the home with the death. And so, they dialled 911.
How can we better support those family caregivers so that they don’t end up in the emergency department? Prepare them. Acknowledge the messiness of death. And obviously, provide palliative care resources.
In our house, I had a frank discussion with all the kids and even our cleaning lady: no matter how bad Don looked, no one was ever to call 911. I knew that if he was taken to hospital, he’d never come home again, and he’d die there. Our palliative care team had a binder that stayed on the kitchen counter, with Don’s Do Not Resuscitate order right at the front. We had a nurse we could call if his symptoms weren’t being managed well. Don had opted for terminal sedation at the end: an induced coma, without food or fluids. The palliative care physician visited every few days to make sure the drugs were working, and to give us his best guess as to how much longer Don could go on like that.
I often see frail, elderly spouses who try to provide this care for their dying loved ones at home, and it wasn’t difficult to understand why they struggled. There’s no question that we were luckier than most families: I was relatively young, and we had the resources for me to stay at home and care for Don from the night they diagnosed his brain tumour until his death seven months later. Our children were incredibly strong and present, and we took turns doing even the most personal and intimate tasks for him. Don had desperately wanted an assisted death, an option unavailable to him at the time. But if he had to die “naturally,” he told us, he’d prefer not to have strangers assisting him. In the end – only after Don was sedated, and with no small amount of guilt, we accepted help from those “strangers” to bathe him and turn him so he wouldn’t get bed sores.
There was so little comfort we could take in the fact of Don’s too-early terminal illness. But knowing that we helped him fulfill at least one of his wishes for his death – that he die at home – was comforting to us. And I thoroughly recommend it to other families if they can manage.
After Don died in my arms, all the kids came up to our bedroom and we surrounded him, breaking out his favourite scotch and sharing stories and memories. The palliative care doctor on call came to pronounce him dead and then I called the funeral home. And learned he’d be spending one more night beside me.
I’ll admit, it was weird. But as I pulled up the covers, I found they were mostly over on his side of the bed, and I smiled and looked over at his sweet face one last time. “Really Don? Hogging the covers, even in death?” And I slept soundly all night.
Maureen Taylor was married to Toronto microbiologist Dr. Donald Low, who died of a brain tumour on September 18, 2013.
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My husband wants to die at home too bless him I’m looking after him caring washing him keeping him comfortable readi g this really done me good thankyou
My name is Geanine and I cared
For my husband until the end has passed September 10 this year. It was difficult but I have to remember he was proud of me and so happy I cared for him until the end it’s still hard for me cry everyday but I have to remember
He’s not suffering and I think it is harder on the spouse/caretaker but with that being said I’m glad I had to knowledge not experienced but now I am experienced in how to care for loved one at home until the end. I think it’s horrible for someone who
Is nearing the end to die in a hospital so to all you wonderful loving caretakers thank god we had enough strength with gods help to do this. Thanks for listening
Your story touched my heart and soul. I lost my soulmate, my love, my best friend of 5 years as my boyfriend . And 7 short beautiful months as my husband. I cared for him every day from April 22,2019 till Jan. 24, 2020 the day he died at our home at 11;30 AM. I and our dog laid next to him as he took his last breath. I can not imagine the unbearable hurt, and lost of a greater degree I would be feeling now had I not had him home with me. I pray your journey that we have been dealt has become more bearable for you. I always say it never gets easier, just bearable.
praying your strength . Blessings to you, and thankyou for sharing your story.
Hi I am so very sad. My husband has a diabetic heel ulcer and it’s gone on to his bone. I am told he will need an amputation above the knee. He has signed a DNR so he will die at home with me. He’s 87 and used to be a big man now he has lost so much weight he is skin and bone. He stopped eating a while ago but still drinks but not much. However today he asked me for egg and chips. Tell me is this normal for a person at end of life. I cooked it but he only managed two mouthful . I have got. Pallative care but I am on my own and find the loneliness and responsibilities overwhelming . He sleeps most of the day and night but I don’t he’s now in a hospital bed as they can manage him better. My doctors tell me there is nothing they can do as the infection has doubled even though he was on IV antibiotics. Now they want him on oral meds … why, I ask my doctor he says we have to try everything. But will it cure him ,I ask ? No is the answer. It’s the hardest thing to do. Watching your life partner die. Please god don’t let him suffer. Thank you for reading this xx
Hello Susan,
I read your post and it felt so similar to my own situation today. My husband has bladder cancer. He is 81 and would not survive another operation. I am several years younger than my husband and just tonight I realised that I was privileged to have been married to him for 38 year. It is like grieving before the person has died and it is such a lonely place. Every moment with him is precious.
Know that you are not alone.
I need to talk to someone. I don’t know who to call. My sister is a wonderful listener, and I’ve overburdened her with my horrors daily, as my husband dies of what we thought was kidney cancer, but he’s slowly losing blood somewhere and all they want to do is keep giving him transfusions. He went from a robust 175 pounds a year ago to 149 as of today. He chose no chemo or removal of a kidney as he was mis-diagnosed a year ago when they told him he had days to weeks to live. He checked himself into hospice and didn’t die. He’s still here, wasting away, not n too many drugs other than Tylenol and Advil, but in pain and refusing any treatment. So I watch him whither away daily. He wants to be left alone and no longer finds any joy in FaceTiming his little grandchildren or talking to his daughters. I spend my day watching him sleep. He eats three meals a day and rarely wants to talk. He was seriously the most generous, selfless, kindest wonderful man I’ve ever known for 44 years. He played beautiful guitar and we were on bands together…. me singing and playing the keys and him playing fabulous lead guitar. My heart is breaking. He’s only 67… I’ll be 65 on June 4th. He already gave me my birthday present early… a beautiful heart necklace. Oh my god I’m going to miss him so. Thanks for reading.
Being in this cancer along with my hubby who is failing now and him fighting it for four years ,the devastation on me is beyond horrific.
I have had so many conversations with the heavens and begged them to have him as a miracle ,,but no .
The dread on me is that pure dread,,there is no family no children no one close to me here in Ontario Canada ,,his care was messed up so bad.y the last four months that it is unforgivable.
I am pursuing it further and we cannot let it pass without some reprimand .
New palliative care is with us now and we keep faith it is far superior to what we had .
He went thro hell and more pain than he deserved.
Cancer ,the very word sucks life away and all sound and motion stops when that word is given on a diagnosis from the emergency teams
For me as I say it is mortal dread at his life being over and me being so totally alone,
On tho I must go and battle through time left for me .
He is here with me at home and will stay home ,
Hi I feel you I too am scared my husband is going to pass away too soon. He has been so ill for nearly a year in unbelievable back pain from a life saving surgery . We have constantly been to physio and therapies but realise now we caused more pain and energy waisted . After 2 recent trips to ER we have been told over the phone 2 days ago its cancer and to await a call from a specialist. Now I sit with him as he goes in and out of sleep getting more and more uncoordinated I cant phone an ambulance as he does not want to go to hospital to die or have biopsies even. He says he knows its killing him but the good thing is hes not feeling the pain today . We feel so angry and sad and 2 days of what we should have been told months ago as they suspected in January he had bone cancer .
I know exactly how you feel. I lost my husband to liver failure this last Oct. 2020. He endured far too much pain and due to covid they hurt him in jhis mind as well. No one could bother to take the time to sit with him in the hospital since they would not allow me up to see him that I had not abandoned him there because i did not want him because he was so sick. No one explained to him that they would not allow me to come. They just let him believe he was unwanted and unloved. Cirrohsis had damaged his brain and memory he had dementia very badly and when I finally got help to care for him at home it was too late he did not know hwho I was or who he was. He did not remember our home and his last 2 months were spent in this state when he deserved so much better.
He had one afternoon about 2 weeks before he passed and I came home from work and the hospice nurse was there and she had this huge smile and looked at him and he said when i came in the door “is that my wife – come here! I almost fainted. For some reason he rallied one afternoon before he died and he was completely himself mentally all that afternoon and evening. We talked and he asked me what happened to him and I tried to explain we justy held on to each other so tight like we knew that once he became tired and went to sleep he would slip away again never to return.
No one explains or tells you how it will be or how much it twists you inside when they breahe badly or panisk over shortness of breathe. OR when they realize dementia or no that they are dying and tell you how scared they are.
I would not have done it any different I wanted him home with me but it also left deep ragged painful scars on my soul watching the only person who loved me in my life suffer so much. Amd how I was helpless to do anything for him in the end. Now my life is an ampty ugly nightmare.
I lost my jon finally due to COVID and with him gone no more social security checks to help so i lost my home .
And now I just do not care about anythjng at all anymore. Death cannot come soon enough. People are selfish and cruel I do not belong here anymore .
AL Wilson Phx AZ
Caring for my husband and having him die at home was a comfort to me and my children. I had been through it before with my sister in 1997. I also had some medical experience. Having the support of a good hospice organization can make all the difference. He wanted to die at home and being able to grant him that wish allowed me to be able to have no guilt after his death.
My 85 yr old husband of 62 years was dying and couldn’t even hold a spoon. He let me do everything for him but at the end as I went to give him some food he said “please Jean do not feed me” – this haunts me – was that the final indignity for a very brave man?
My heart goes out to you. I am noone w/any medical anything. But I FEEL things. Your husband was going to pass. He knew it. I have read that as we near our final days we have no appetite. So..do you think maybe as he was accepting his life on this planet was ending..and he did not have an appetite anyway that maybe he just didnt feel it was necessary for you to go through the extra effort for something that would not change the outcome or might even prolong his passing? Love is a blessing . God bless you and I wish the best of all things for you and your family.
62 years of marriage…that says to me that he had the sustinance he needed without food. He had you. His family. I believe Jean that he just didnt NEED anything else. I say this with a prayer that my thoughts and words can bring you some comfort. May the Good Lord answer the questions of your soul so that you also can know peace inside yourself. Thank you for being a person that cares. Thats probably all he needed. God bless you.
Kathleen I had much the same from the sub acute facility where my husband spent more than 2 months after another stroke and being in intensive care for a fortnight. I walk with a walking stick because of my hip and I was asked by a very insensitive doctor whether I actually loved my husband if I did not want him to spend his last days at home. I just stood my own ground.
Thank you
Hospice says, nothing. The nurse will come declare him dead, then the funeral people come. Hospice changes the playing field. With copd, a hospital declares that covid. Even if it isnt.
I wonder if you still check back here. I dont want to go through this. I am scared of his suffering. He has been suffering nearly 5 years. Now the days worsening as we approach the 5th year. COPD he has not smoked in forever. But that doesn’t matter today. He has lost 11 pounds in 6 months. 5’9″ and 129 pds fully dressed. My oldest always said, “Dad is a force to be reckoned with”
But not now. Today Dennis pooped his pants. Its his second accident in a week. Having to fix it has aggrivated my back which has been flaring lately. I can barely walk let alone all the maneuvers that wiping up, helping get shoes clothes off and not getting poop everywhere. What am I going to do. We have Hospice, but we dont get any actual help. We are now in the time of covid. He can’t go to a hospital or anywhere else. He would die alone. I beg The Universe to please please take him in his sleep and soon. I ordered pads and diaper liners to help as things get worse. He is 63, I will be 63 in June. If he makes it to May 2nd he will be 64. Its 2021 now. Hard to believe how the years have been so unkind. He is like a skeleton. I will have to sell what little we have left, do car life and try to get my ssi. A widows benefit would be too low. Its all been taken. All we worked 35 years for. All gone. And soon, him as well. I hate god.
Oh Nikki, I know you may hate what is happening but everything really does happen for a reason. It is now April, I hope you’re in a better place.
Vanessa
Vanessa, you are so wrong……things do not happen for a reason. Im sure you mean well.
I can totally feel for you. I honestly hope i am never in your position..or his. As a smoker for 45-50 years I probably have it coming my way too. That I do NOT know yet. So I can tell you what I do know. You can choose your poison..it can be nicotine…gasoline or anything in between. But i do believe when your number is up there will be no stopping it. My dad was an alcoholic…not violent. My dad at one point looked like a hollywood movie star..and we lived just outside of hollywood in the San Fernando Valley
. my mom young and pretty…three young children. Cute little ones that we were.
My dad had a cancer of the heart and mind. More commonly known as alcoholism. UCLA medical center gave my dad a complimentary (because of course by the time his liver died we were completly without funds) liver bypass surgery. A shunt through his spleen. They told him he coukd nrver drink again on only a spleen..not a toxin filter like the liver is. My mom was overjoyed! For 2 years my dad didnt drink a drop. Then we kids did something that my mom said caused him to start drinking again. We stole their quarter collection. You know..in the blue books. Maybe that was the excuse…maybe not. The point is my dad continued to drink on only a spleen for 2 years more..i was angry angry angry ..mad at my dad mad at my mom for not leaving him! She had us 3 kids!! He was a drunk!! Thats how i felt. My dad had a massive organ failure one day. He was braindead and all his organs..kidney , heart, spleen, all failed and who knows what else that meant. I am 58 years old now. I was 20 back then. My mom my brother and i had to make a family decision. Do we want my dad to be allowed to live on life support. We had food stamps. The money..insurance was all used up. My mom said..”what do you kids think he woukd want us to do? I dont believe your father would want to be kept alive with no hope of ever again being the brilliant man he was” and so we agreed to disconnect life support the next morning. And so we disconnected his life support. I have never before or since felt the degree of pain i felt to watch my mom lay her head on my dads chest. Sobbing. The drs telling her “He’s gone now” and the monitor was still going “beep beep..beep” and she was sobbing and arguing with them that “No! Hes still alive..look!” I ran from that room!! I never looked back. I know that at that moment I HATED GOD !! I HATED HIM FOR TAKING MY DAD ..FOR HURTING MY MOM LIKE THAT!!! WHY WHY WHY? And I would blame God and HATE my dad for 20 years. And this brings me to my point. It took me 20 years to finally come to a point where I had become my dad. I am an alcoholic. Have been since I was 12. My beautiful, wonderful, beloved and much missed father was 9 years younger than i am today. At the 20 year mark I realized that my dad was just a person..just like me. Overwhelmed with 3 kids..financial and addiction issues…he did not MEAN to hurt us. He was just trying to do this life…for whatever we can make of it. Just like me and you. Just like your husband. And when I realized that all people are fallable…and God didnt orchestrate the breaking of my moms heart. Then and only then did i lay down my sword with God. I realuze that cancer is a different demon…one that one does not intentionally or thru self harm bring on themselves. But that is where my story comes to an end. The outcome of the horfific circumstances of the end of human life remains the same or similar. The point of what im trying to say to you is not about what i went through…what my dad went through..my sister. Brother..we all are scarred for life. But. The point to my story is how i watched my mother..married to my dad for 23 years…and never so much as kissed another man since the day he died ..feb. 12, 1982…stand strong. My mom did not wuestion God..I HATED HIM. My mom cried. She grieved. She mourned…but she didnt blame.. She had to get a job for the first time in god only knows. I remember..she cried then..”your father SWORE to me I would never have to work another day in my life!” And after all she had been through…3 kids…enabling an alcoholic she was madly in love with evefy single day of their marriage…THAT woman was pissed off! And I watched my beautiful wonderful mother who wouldnt divorce my dad for the kids’ sake
find herself some business clothes (Mervyn’s specials) and though she cried in front of the mirror saying “Omg! Corinne I am so FAT!” as I told her “No mom you look beautiful” then we both sat on her twin sized bed crying our eyes out like babies. And the nect day she went to work as a secretary in the Silicon Valley, Santa Clara, California. And my beautiful mom cried sonetimes. But she believed in God. She didnt question (well..maybe in her own heart) why?? Lije I did. She did what she had to do. With a smike. I respect my Mom more than anyone in this world for the grace with which she handled the life and loss of my father. My mom is 84 years old now. She has heloed me, my sister and my brother more than words can say as she lost so much. She was diagnosed with lung cancer y years ago. They had to take half her right lung. She ckeared the 5 year mark. Now..a spt oe lelung that realy as ben there from the start. When I talked to er today it apoears that that spot isnt cancerous. Not sure..but for now. My mom alwa s said “corinne when te God Lord decides its time
to go..then you’re going and thats all there is to it” “If your number is up..you’re going and that’s all there is to it” . My friend…your number is not up yet. Sadly, his was. But that does not mean your life has no value…in your book of life you are on a different chapter. Acceptance is the key. There is no waybof knowing absolutely anything really..Heaven…God…questions but no answers. But to you I say this Since we dont and cant know what is beyond this life, or the why’s of anything havingvto do with the end of our lives here…in my opinion acceoting the things you can not change is pivitol in continuing on. We all do need to believe in SOMETHING. Be it God or Buddah or the Ancient Aliens. Because if you refuse to believe in a power higher than yourself..not only donyou have nowhere to turn in times of loss and grief…butvif YOU dont believe…then where does that mean your loved one went? I feel it is better to believe without proof than to have nothing to believe in at all. My mom was adooted, taken by the state with her 5 siblings from a bar in Laurel, Montana when she was only 3 years old. She was adopted and raised as a Montana farm girl by a mom and dad she loves to this day though they are long gone. Her adoptive mom died on my 1st birthday. And she sentva cake in the mail from montana to california. There are pictures of me..bald headed and big eyed eating the frosting off the micer beaters because she had to refrost the cake. Her mom DIED. I asked her mom how could you STAND my birthdays. A ball and cryreminder every year of your moms death!? And she said “well it wasnt your fault and you needed me that wouldnt have been fair to you for me to curlnup in a ball and cry!
I hooe that somewhere on this long long mini novel that myvstory has given you a small bit of hope or happiness. Happy mothers day to all the moms out there. And Nikki…I ask that you find peace in your heart and happiness innyour life in Jesus’ name. I want you to know that I have never gone to church…on a regular basis. But I asked Jeseus to be my saviir when I was frankly drunk and on drugs at the time. My neighbor did this for me. I almost thought she was completely insane when she talked in tounges with her hand on my head asking for jesus to enter my soul. I am telling you. There lies the power. Since then i have been shown a few miracles that there us no doubt in my mind could not have been anything but a miracle. One of those is my daughter who I named Faith. I still do not attend any church but…Faith will be 20 years old in August. You will forgive God in your own way in your own time. Im just saying what happened to me. Im sorry for what you are going through. You can BET as soon as my finger is dine typing I will be sending a prayer up..from my soul for all good things to come your way. Acceptance. God bless you Nikki..and your family. And now…this prayers for you! 2❤
Since we r now in lockdown due to Covid 19, what happens now when a spouse dies in their home.
I took care of my husband the entire year we battled pancreatic cancer together. We aways had hopes he would be the small percentage that beat it. Infortunately we lost
I am a very strong determined woman and now just waiting for God to lead me in the right direction and give me a purpose and direction in my new journey
God Bless you. May he show you your path soon. And i pray its a path to happiness. Aamen.
The experience of taking care of my dying wife (47yrs old), especially the last 2 days with the shallow breathing, loss of consciousness, is burned in memory and i can’t seem to shake it off. It overshadows all the happy moments we had together during our 20yr marriage. She’s been gone for a year now, and I still cringe whenever I think about it. I knew she was going, but knowing what I know now, I’m not sure being there when it happened was the best choice, as the author says. It will mark you for the rest of your life, and not in a good way. I just hope one day the happy moments will resurface.
Oh .. it was really touch my hearts
I lost my fiancé too ..one night before he die , he want me to sleep right beside him , he told a nurse who came by to his room in the hospital
He said it’s okay she can stay and sleep with me tonight she’s my wife I was really sad and I was cry all night not sleeping at all
That is so beautiful so precious what a wonderful memory
My husband died December 12th, 2020, four days before his 76th birthday. Our niece came and stayed several days a couple of weeks. Our son helped on weekends. The last seven days we were on our own. I managed his medicines, gave him enemas, took care of his abdominal drain, and provided as much support as I could. I was up for most of night. He was in more pain than he acknowledged.
Four days before he died I took him to the local VA emergency room. I told the doctor and nurse that I felt that I was abandoning him. He was admitted to the hospice unit at the VA.They told me that they had reviewed his records and saw how many times I had called to try and get help. No one explained at the first of his diagnosis of pancreatic adenocarcinoma about palliative care. If had had palliative care, the change to hospice would have been so much easier.
I wanted him home to die. He was brought home by ambulance at 2:30 pm, signed in to hospice. He died at 5:40 am the next morning with me and two of his sisters near by. His last full sentence was to his niece who on speaker phone told him I love you Uncle John. He said I love you too. He will forever be missed.
Condolences Anita my dear ,be strong okay
God loves your husband
Thank you for this…my husband has Stage IV incurable prostate cancer and I feel that although he won’t admit it yet himself, he may not be able to work anymore. He is currently in the hospital and I cannot see him due to COVID. I am able to video chat with him on a daily basis which I think helps. Upon his release, he is going to have radiation to his hip to hopefully alleviate his pain. Anyways, I think I am going to have to get palliative care involved in his care this week…
I hope he is getting better dear
God bless you
What a sweet love story.
I am facing my husbands terminal cancer.
Thank you for your story.
Dear Maureen,
Your lovely story is a great gift to those of us who are heart-broken over the reality
of a loved one’s dire prognosis. My wonderful husband -my life- was just diagnosed with an aggressive sarcoma and given only a few months to live. Your poignant story has convinced me to keep my husband home and let him die peacefully with his family.
Thank you for sharing and for your kindness. I am most grateful.
Kate B. Moore
Saint Louis, Missouri
I was diagnosed with multiple sclerosis in June 2016, I am in a wheelchair and have a lot of spasms. My wife was taking care of me and doing her best to find a solution to save my life Four months ago my wife came to see me and told me that she found out about a man named Dr. Peter Wise and that Dr. said he could help me of my situation, I was glad to hear that and allowed him to give it a try. three days later he came up with a herbal formula and said it was from Dr. Peter Wise, I was very happy and I started the medication and in 3 weeks I was able to walk without support and my spasms stopped and now I don’t feel any symptoms of multiple sclerosis. Thank you Dr. Peter Wise for this great healing. You can contact Dr. Peter Wise for your healing via peterwiseherbalcenter @ gmail. com
Oh My Lord! My heart is breaking for what u and yr family went through
Love that comment at the end, that was awesome. Thanks for sharing. I’m going through the very same thing, wife in home hospice and it isn’t easy. But, I know it will get worse.
My fiance passed away in early april. He wanted to be home with me & I became his 24hr caregiver . It was so very emotional & hard especially when he became non verbal & then stop eating. He could no longer communicate I cried myself to sleep every . single. night . Before he became non verbal One of his last words were ‘you are my best friend & I am yours’ . Few weeks later he passed stopped breathing with me next to him . My heart was so heavy for the next month, but he appeared in my dreams every night for 1.5 months & in my last dream of him he looked at me & said ‘I have to go now’. I needed to let him go & he comforted me every night while I fell asleep & cried. I’m at comfort now knowing he is here with me bc of his signs & orbs. He reminds me subconsciously you can & will do better go on with your life I will be here for you.
Wow!
What a beautiful Love for your husband.
thank you for sharing your experience with us.
USA
Laura Vitanza
My husband wants to pass away at home , he’s 60 and has secondary cancer of the oesophagus. At present he is in a hospice as nobody seemed to be able to get on top of his pain . He also has lower limb paralysis as the tumour presses on his spinal cord. I sit here this morning in floods of tears wanting to bring him home so I can hold him . Due to covid 19 I’m not allowed to visit him and it breaking my heart. I wish they had been able to get on top of his pain then he would of stayed at home
It was not weird. It was beautiful. This is how country people have done it for ages. Many hands were there to help with care. You were smart to get help tho. You did the right thing. I hope your children will offer you the same choice and care. I’ve been with loved ones in hospital, home, nursing home. Home is better for them. Be sure to get an end of life home care insurance policy for yourself. Only loved ones can give what you need the most – LOVE.
Hi i just lost my husband to small cell lung cancer on jan 27th i looked after him since day 1 i slept by his side in the hospital for 35 days was so happy when we got to go home he missed his children and grandchildren so much this was in july he got diagnosed his first chemo treatment went well it had shrunk the tumors but than they couldn’t give him anymore chemo was getting to hard on his body so we waited 2 months get more tests done his cancer came bk with avengence worse it spread to liver bones lympnodes stomach so we tried chemo again he didn’t get to finish his last treatment his body was too weak so he wanted to go home i brought him home on a friday me and my children looked after him right till he took his last breath he died at 1:34 am monday I’m so happy and grateful for the time we had left together he was such a brave strong courageous man he will forever be in my heart he was my twin flame
Not everyone can choose where to die. To have that option is truly a blessing. Comfort and security of your own personal well-being is key. This option cannot be fully operational without the support of family and the health care community. My Father passed away days ago and I was so grateful it happened at home; his way. My heartfelt empathy goes out to the people of love ones who do not have the resources to achieve palliative care at home. Such is the unfortunate way of life and death.
My husband was diagnosed with glioblastoma nearly 3 years ago. He went through a long period of denial and beleiving he would beat the odds. We have never spoken about where he wants to die or rarely about death at all. Neadless to say, very difficult. We have a neighbor who stays with him during the day and I am with him at night. I am still undecided where to have him spend his last days.
My husband die at home and I’m scared to stay inside the house .
My husband has brain cancer and hospice is helping us. Before he lost his cognitively we talked about would he want to die at home or at a facility. We both agreed he did not want to die at home. Now I’m having trouble figuring out where he can go in the last weeks. I keep hearing there is no place. His wishes are not to die at home. What do I do? I try to google places and there are none.
My husband has brain cancer as well. It is very difficult to know what to do or where to go for additional information and assistance.
Reading your story brought back many memories. My husband died at home from colon cancer. He was 44. I didn’t sleep in the same bed but we slept in the same room till he died. He too wanted to die at home. Looking back, I think it takes a certain amount of strength and courage and love to do what we did. And what I mean by the word courage and love is the actions you see when a stranger puts himself in danger to save a dog from harm. Love is Love no matter who or what. I learned a lot about myself from that experience.
I witness this story so many times in my job in the community. Whilst carers struggle to fulfil the dying person’s wishes about being home, no strangers etc., the fact is that after death, there is still a lot of guilt experienced by carers because they couldn’t cure or prevent the death. Often by this time, the carers are exhausted and getting sick themselves which only serves to exacerbate these guilt feelings and grieving in general. More money is needed to be invested in community support for people wanting to die at home. I hope when my time comes, I have that option (unless of course, my death was unpredicted and instant). My hat goes off to all those families that care for a dying person at home. It is a job well done!
My husband died two years ago after a long battle with diabetes and congestive heart failure, he was in the hospital for two months for a debridement of a foot ulcer which ultimately turned into him getting his heel amputated, his right leg was amputated in 2012. The last week of his life he begged me to bring him home and i didnt do it. I had to work full time and i was terrified that i would come home and find him dead. I would work my full time job and then drive to the hospital and spend the night with him. I left him one morning to go to work, i barely got to work when i got the phone call that he was non responsive. By the time i got to the hospital, he was gone. I never got to hold his hand one last time, i didnt get to tell him i loved him one last time,,he died alone. And i will never forgive myself for not granting his last wish.
I am sharing my comments because I know not all experiences are so positive and loving and supportive. They can’t be.
I see all the loving families surrounding the dying loved one. That’s how my family was, everybody was chipper and fun loving to the end.
My husband is a whole another matter unlike anything I have ever witnessed. Since he was diagnosed 2 years ago, I suddenly found myself married to Cancer, not Will. Every breath I took, I every discussion I tried to have, took place with Mr. Cancer. The disease and subsequently approaching death has not left my mind for one single minute while in this house. I am sitting vigil now in his last days. He became so mean with his “honesty” that all his friends and our kids have pulled back and disappeared. I am only here because I said 42 years ago “for better or worse.”
It creeps me out having to have him die here at home. I don’t believe in ghosts, but we had a renter die here long ago, and it still seems like his ghost walks the hallway every now and then. This is the ultimate punishment, sitting here with a man who used to be my best friend and soul mate, whom the cancer has turned into a very ugly soul. He’s not eaten anything for 4 weeks, and had no more than maybe 8 oz to drink for the past 2.5 weeks. And he still got up today to take a shower (the first in 16 days). He refuses for any stranger to come in the house. The last time a hospice nurse was here to check on him, he told me to escort her outside, and for me to please leave with her. I am looking so hard for that lost husband and like I said, it completely creeps me out waiting here, by myself, for his death.
Mary please do not feel guilty or to blame for what you are going through with your husband. These diseases can very much change their personalities to the point that we barely recognize them. At some point, you also have to think of your own health and well being and it sounds like the stress you are under is overwhelming. You cannot do this alone and it sounds like you may have to override Will’s wishes and consider taking him to a hospice or palliative care unit. Even if he will not see the hospice nurse, ask her to come back to speak to you about your options. Email me at maureen.taylor31@gmail.com if you would like to talk further. Your last memories of Will should not be like this, nor do I think that’s what he would want if he was not in such an advanced state of his illness.
I am so sorry for your pain and I experienced something similar. My husband of 18 years was diagnosed with kidney cancer in 2016 and passed away in 2018. As a couple we have both agreed that we will always choose to be kind and compassionate whenever we communicated with each other. However during his last month of living he was exceptionally mean towards me. I was stunned and didn’t understand why he was constantly yelling at me. I was his caregiver 24/7 and did everything for him and would hoped he could see I was doing my best but his yelling was relentless. Two days before he passed he was heavily sedated so he wasn’t able to speak to me and to be frank l was a little relieved because I didn’t want him yelling at me anymore and obviously I didn’t want him in any pain. I have come to my own conclusion that he was suffering and could not believe how cancer had taken away all his freedoms of being independent. My husband, like myself takes pride in being self sufficient and would rather help someone than to be the one who needs help. So I now understand why he was so mean to me. It’s that old adage, that you hurt the ones you love because we are the closest and most trusted person to them so we are their only source to let them unleash their anger toward cancer.
It is just so easy for patients to feel pressured into saying they want to die at home, when palliative care staff keep saying most people want to stay at home,in a manner that makes one feel there must be something wrong with you if you don’t want to die at home. They don’t discuss the mess, the pain, the confusion the fluctuating level of consciousness, the need for diapers or a catheter, and eventually, the shallow, laboured breathing. Most families have little resources and no cleaning lady. I would wish that people stopped talking about going to hospital as though it was a bad thing, I have seen people get very good care and support in hospital that will never be available at home. There is also alot less pressure on families. I would hate to die at home and pressure family members. We should let people have a genuine choice.
I absolutely agree! I am overwhelmed with all the tasks – am I giving the right medicine – especially at 3 a.m. when I was just ripped out of my sleep; the mess, as you said; the days when he is awake but confused, talking about things I can’t recognize and get furious if I ask questions trying to understand so I can answer appropriately; wanting more of one of the drugs than I am authorized to give, because he enjoys the high (former hippie doper) … it is all so overwhelming.
In September 2019, My mum wanted to die at home using MAID, and not at the hospital. She had glioblastoma. We had the forms ready for her to sign but a week before she died she collapsed in the bathroom and was taken to the hospital. She was placed in a hospital room with a beautiful view of a garden and peaceful courtyard. The care she received from the nurses was second to none. They were lovely and so caring. Although she was sedated, with no food or water, she lasted a week. So strong. Many friends came to visit and shared wonderful memories. It was a good experience for us. I feel that my dad would have been a wreck if he had to live in the house in which she died. I regret not getting her the medically assisted death, but she was in no pain and was at peace. We’ve managed really well and it’s a year this week September 25, 2020.
I cared for my Mom at home as she went through her journey with Alzheimer, she was my best friend and biggest cheerleader. I promised her I would never place her in a nursing home, I would take care of her in her home. I postponed my career to care for her, moving into my childhood home with her. I went to conference, joined support groups and educated myself as much as I could on this. I learned very quickly the lack of support for families caring for loved ones. I watched my Mom go back in time to her childhood, looking for her Mom, playing with Legos and coloring. I wanted her to know I was always there for her, gave her lots of hugs and took her outside at the end in a wheelchair, as she loved being outside, the flowers the humming birds and chipmunk. Her other best friend her little Jack Russell Tango was there every step of the way. She never forgot him and looked for him daily through out the day and petted him. He calmed her. She had been on her own for 20 yrs after losing my Dad to cancer. She cared for him at home till the end. 1 month before her passing we lost her best buddy Tango, I placed a black and white stuffy in his bed, when she ask for him I said he was sleeping pointing to his bed. She was ok with that. You have to be in the world of the person ur caring for don’t try to bring them back into your world. In the end she needed 24 hr care, could never be left alone. I wanted her to get up everyday and be dressed, it was important for her to have her dignity and be cared for like she would care for herself when she could. Yes there were difficult times emotionally and physically. I was watching my best friend disappear a little at a time, the longest goodbye they say . But deep down inside I know my Mom was still there somewhere as she never forgot my name and called for me, squeezed my hand, smiled when I came into the room, laughed with me ,hugged me and two days before passing after becoming bed ridden the last week of her life, she had one tear roll down her face as she said I Love You and squeezed my hand. There is so much to say the most important is I have no regrets caring for my Mom and letting her die at home as she wanted. My Mom deserved the very best , she was the best Mom ever one could have, and I wanted to give her the best care possible and make sure she was safe, happy and had her dignity. I Miss Her Everyday.
Thank you for sharing this touching story. My husband also died peacefully at home after 2 1/2 years battle with ALS. He also signed DNR.We had very good support from CCAC & blessed with caring PSW, Nurse Practitioner & Physiotherapist.I am an NICU Nurse & cared for him at home.We knew that
there was no cure & we did our best to live each day at a time accepting the outcome. Our family grieves but we have no regrets about his dying at home.
We are blessed to live in Canada with our Health care.
I remember Dr. Low & his great work especially during SARS. He is resting in peace.
I pray for you & your family.May the many happy memories you shared help to comfort you.
God bless.
Thanks you so much for sharing your personal story.
Lovely article Maureen. I am a social worker at the Cancer Agency in Victoria and facilitate a support group for partners. I agree that the part most fear is not knowing “what death looks like” and many are not prepared and find it hard to tolerate the unfamiliar sights and sounds. Thank you for sharing your experience. I will share your article with the group.
My mom died at home in her own bed at 101.5 years of age. She was able to have a shower every day, until the last week of her life. Self-managed care, the nurse practitioner and the palliative care homecare team from Alberta Health Services made it all possible. Yes, dying at home can be comfortable, with the right services and supports.
My husband has been given 6 months to live, 2 of those months have passed. He has lung cancer and is still doing chemo. I just don’t know how to act and at times what to say. I don’t want to say something wrong. I have been praying that God gives me the right words. John and I love each other very much. His desire is to be home to die. I have already gotten I. Touch with hospice! They will be coming to our home for his care. Thank you for your story! I loveJohn so much and want to fulfill his wishes to die at home. ♥️
I have been blessed to be able to deliver the best care and the person’s wish to remain in the home until the end. As hard and challenging as it is, there is great comfort at the end. I have had the privilege of assisting the family to fulfill their loved ones wishes.
I agree that we need more resources to achieve this mission. Struggling with bureaucracy is very taxing and stressful on families.
What a heartfelt and helpful writing……how brave of you to share it with everyone. As a cancer patient on my third recurrence, I find it extremely beneficial to hear the storiess of families who have gone through what I will go through.
Thank you so much. Sending you healing thoughts.
Thank you Maureen for sharing your truly touching personal experience of your beloved Don…and big hugs to everyone who has experienced the death of a loved one, especially when they pass away at home. I lost my Dad in April 2016 from colon cancer (mets) and had the privilege to be by his side the evening he died…he died at home surrounded by family…we wouldn’t have had it any other way ❤
Thanks Maureen for sharing your intimate and personal experience with the death of a loved one. Your understanding of what happens to the dying person needs to be better communicated by the health care community to provide the confidence people need to be willing to go down that road of looking after loved ones at home. I am so proud that as an accomplished journalist you chose to become a physician asssistant. Your ability to communicate and advocate for patients and families will leave a legacy.
My husband of 22 years died at home of brain cancer, in 2013, after 10 years of battling the disease. Our children were 5 & 18 at the time. I could not have looked after him without the amazing support of the palliative care community, along with family, incredible friends and a wonderful family doctor. Dying at home is not for the faint hearted, but it is SO worth it, if it can be managed.
Thank you for sharing your story. God bless :)
What a wonderful narrative about the challenges of supporting death at home. Thank you for sharing this story which has huge implications for where our health system needs to go.
My husband has been given 6 months to live, 2 of those months have passed. He has lung cancer and is still doing chemo. I just don’t know how to act and at times what to say. I don’t want to say something wrong. I have been praying that God gives me the right words. John and I love each other very much. His desire is to be home to die. I have already gotten I. Touch with hospice! They will be coming to our home for his care. Thank you for your story!
My husband died at home three years ago and I still feel guilt and inadequacy at being unprepared for this event. Your article has given me a fresh perspective and some peace of mind. Thank you Ms Taylor.
Louise
Thanks for writing about your experiences everyone. The information from everyday Canadians is much appreciated, as there is lots involved with this dying experience. With physician assisted death now in place in Canada, there is still great need – especially for the care-giver and family. This will not come about given the nature of the politician today. So… the struggle for the ordinary person continues, much as it has down through the ages.
The thing that gets my goat is that people with money always have had options. Those with little money have few and must do it all on their own – unless they are lucky to have family and friends to support them. If there is one lesson to be learned with all this for us poor folk, it is this: be kind to others and hope that when the need arises, the kindness will be returned.
Hi Maureen,
When Bert died he was surrounded by his family at home in his own bed. It was a blessing for us and an experience that couldn’t have happened without outside support.
Thank you for reliving your experience in such a well written and personal piece.
Thanks for telling me that Mike. You’ve had your share of deaths too, haven’t you? I like to think of Bert having a grand send-off, dying as large as he lived! I hope you’re well.
Thank you for your kind letter and sharing it with us.
My mother wanted to live her last months in my home. Everything went fine until she passed away trying to get the funeral home or ambulance to pick her up. A doctor is the only person that can sign a death certificate before the funeral home can pick her up. But thank God her family doctor came over. Family doctors need to make more house calls for this kind of an emergency or the government must hire trained professionals to sign a death certificate in someone’s home so the doctors have more time for the elderly and sick. This in my opinion.
Thank you for sharing something so personal in order to educate others.
Thanks very much for this Maureen. It is interesting to hear the personal side of the life of a public figure. (and I did not know that until after I read the article saw the line at the bottom) We will all benefit from the advocacy you have both provided. I am one of the minority who would prefer NOT to die at home, but I still believe it should be available to those who would prefer it.
Maureen
Your story is so touching and so well written.
It occurs to me that those of us who are or have been health care providers, are better equipped to care for family at home than “civilians”. As a former clinician trained in palliative care, I have seen death and disability. I can provide personal care. I also know how to use the system better than most. I would contact palliative care services early, even if (especially if) active treatment were being given. Somehow the cancer system still tends to refer too late. And, it’s still mainly outside the box to think of palliative care for non cancer deaths.
Thanks again Maureen for raising these issues.
Thank you
Amazing story and tribute. My mother died at home almost 17 years ago from a brain tumor and leukemia. I’m a nurse and was able to help my family care for her as she wanted at home. The 911 conversation was one I had to talk about a lot. Thank you for this!
I have lost two husbands who both died at home. One from cancer and one from sarcoidosis. I took care of both of them, the first for 7 months, the second for 3 1/2 yrs. I had help from CCAC, VON nurses and some PSW’s. These people become your lifeline and your friends. I took care of my second husband for 2 yrs before I knew that I needed help. I am so glad that I had the stamina to allow them to die at home. I understand that this is more than some people can handle and they should not feel bad for this. Thanks for sharing your experience.
BTW I live in Tilbury and loved your mom and your Dad was my lawyer.
Wow, Deb – thank you for sharing those experiences. Not sure I could go through that twice. Of course, as you know, my mom ended up dying just 4 months after Don, at home, with many of her children and her husband around her. Excellent palliative care provided in a rural setting, although again, we were lucky to have lots of available family. I’m glad you loved my mom too :)
This is so beautifully written, describing the last wonderful gift that this family gave their husband/father. My husband, brother and I, along with my stepmother, took care of my 87-year old father at home during his last 5 weeks. He just faded gradually away, dying in my arms as I was helping adjust his position and covers in bed. It was a blessing and a priviledge to be there. Debby Copes, Toronto
Hi Maureen,
Paul Adams here. We were CBC colleagues but I am not sure we ever met.
My wife Suzanne was diagnosed with Stage IV breast cancer in 2013. Despite the burden of her treatments, she was able to live a relatively normal life until about six months before she died last September. That meant we had lots of time to discuss the final stage of her illness. As you said is common, her wish was to die at home.
When it became clear last spring that the time would soon be upon us, I set about trying to prepare myself. I was pleased to find that there was a support structure in place through CCAC. However, I was also acutely aware that those services were unlikely to be entirely adequate if we got to the point that Suzanne needed around the clock care. Neither Suzanne and I had relatives here in Ottawa and our children were then 13 and 17.
In fact one of my concerns was that we would never be able to get a hospital bed up to the upstairs bedroom, so that we would either have to do without, which might not be possible, or we would have to re-locate Suzanne to the main floor where it would make routine life impossible in our modest-sized home. I was particularly concerned that if Suzanne lingered a long time, this physical set up would be devastating to our kids, who were already grieving very deeply. I am sure they would have been willing to help me help Suzanne, but to what degree they would have been emotionally or physically capable, I am less sure.
When we began engaging with the CCAC services, one thing that struck me was how loose the coordination was. I got increasingly worried that when we came to the point where Suzanne needed more extensive care at home, I would be scrambling to coordinate everything myself at a moment of acute stress. It was an additional burden that we were not allowed any contact with a palliative physician because Suzanne was still receiving active radiation treatment, albeit purely palliative.
Although Suzanne suffered a series of seizures of increasing seriousness, due to growth of tumours wedged between her skull and brain, she was able to live with reasonable autonomy through the summer. Her strength ebbed, but we were able to go out for our anniversary dinner exactly a week before she died. Two days after that she collapsed at home and I had to call an ambulance. She was taken to hospital where the palliative physician asked me a bunch of questions about our set-up at home and told me that she did not think we would be able to care for Suzanne adequately at home in her condition.
After two nights she was transferred to a hospice.
One thing I was entirely unprepared for was the doctors’ decision not to feed or hydrate her. I was told that at this stage it would “only feed the cancer”. It was utterly shocking to me. I had never read anything about this being a possibility, and although I accepted the decision after consulting Dr. Google and realizing this was a common practice, it left me shaken, worried that perhaps after caring for her so intensely over so long a time, I was deserting her. I couldn’t help wondering whether this was something real, or a medical myth like the once-popular notion that babies do not experience pain. I wished someone had prepared me for this possibility beforehand.
In any event, Suzanne never complained about hunger, and hydration seemed only to be an issue with regard to discomfort in her mouth. In the hospice she was given an intensity of care I have trouble imagining we could have duplicated at home, especially since on several occasions we made changes to her medication quite quickly on my urging in response to changes in her condition and after consulting with the palliative physician. Luckily, Suzanne was able to give meaningful consent to these changes even on her second-last day.
I wished we could have had a private room in the hospice, rather than a semi-private, in part to be honest because I thought it would be unimaginably hard for the young woman on the other side of the curtain to hear what was going on on ours. Our kids came many times over the last few days and there were tragic and beautiful moments between them and their mom. But these moments were also overwhelming to the kids. My son in particular seldom seemed able to bear it longer than 15 or 20 minutes at a time, though when he was there he would heave his 6’5″ frame into the hospital bed, setting off alarms, so that he could hold her in his arms. My tiny daughter lasted longer, falling asleep along with Suzanne on one occasion.
I simply cannot imagine how unendurably painful it would have been for the kids had this same scene played out at home, where it would have been impossible to get a glass of milk without passing through the space where Suzanne would have lain in her hospital bed with her coterie of nurse, equipment and me.
She died on her third evening in the hospice, with just me in the room, at least on our side of the curtain.
I feel a little guilty about this because I had promised Suzanne I would do everything I could to make sure she could die at home. And yet I was enormously relieved for myself and the children when the doctor at the hospital said she had to go to the hospice. At the time, the doctor left the lingering possibility that Suzanne might come home later, once we had put arrangements in place. But that was obviously a fiction, given that nutrition and hydration were not on offer. Suzanne did not protest going to the hospice in the circumstances and I think she appreciated the nursing and medical care she received. Her last days and hours were more comfortable for being there I am sure.
Suzanne and I and the kids were just lucky in this one narrow respect, I guess, that when the time came, it came so quickly.
Hi Paul. So beautiful, your eloquent description of those last days with Suzanne. Obviously with children so young and her having so many symptoms that required management, I think you did the right thing for Suzanne and for your children. And hospices are SO superior to dying on a hospital ward, which is where too many patients spend their last days. I’m very puzzled that Suzanne wasn’t able to access palliative care earlier because of her palliative radiation — this goes against everything the palliative care community is trying to communicate about the benefits of early palliative care consults. Perhaps we’ll explore that more in a future Health Debate story. I wish you all the best, if you’re in Toronto we should catch up :)
What a courageous lady,my husband and soul mate passed away six months ago from MND with the added complication of frontal temporal lobe dementia, he had previously been a very fit intelligent young man(56) I was persuaded by the health carers to place Martin into respite for a few weeks to regain my mental and physical state I was exhausted. My darling Martin never did come home to me, my decision to let him go into short time respite haunts me, I feel I let him down I his care and it by far is my biggest regret I miss his smile every day. I would have dearly loved him to come home and be with us,the family no matter how long he had spent with us,i feel it would have been his wish.
Please don’t beat yourself up Jacqueline. I’m sure your husband would not blame you at all, and it is very important for caregivers to take care of themselves as well – otherwise there are two sick patients! I do sympathize with your ongoing grief. I miss Don everyday.
Powerful, Maureen. We should all be so well loved and cared for.
I had to comment when I read your comment… I’m so sorry about the loss of your husband. My mother passed away from FTD, last summer, and she, too, was in care when she passed away. I echo Maureen’s sentiments that your dear husband must have loved you so deeply and would have wanted you to look after his soul mate too ;) One thing I’ve learned about losing my mother is that when she passed away, her illness did too. I will never get over her loss, but I am immensely comforted by all the happy memories of her that came flooding to the surface once she died. I hope you, too, have lots of joyful, comforting memories too. Wanted to share this with you in the hopes that you know you’re not alone. Wishing you the best.
Im laying here next to my husband in a hospital bed.He was diagnose with Giloblastoma multiform stage 4 late Sept of 2020…And I’m reading all these stories..and I find it so hard but touching and scared..because I feel his days are aprouching also.And it will probably be at home with hospice care.I myself am worn out mind and soul! But I keep going..MY FAITH IS STRONG! And my love for him is stronger! The beast of this cancer has consumed my love ! And I grasp at any lil sign he can give me !! My heart knows it will be soon I will have to let go..but the memories he gave me I will always cherish!
Jacqueline, I am caring for my husband at home. We sleep in the living room, me on the couch by his hospital bed. I do have PSWs periodically as Im often overwhelmed. So many try to talk me into putting him into respite for a few days or long term. It’s making me angry that they won’t accept my desicion. Thank you for telling your story. It helps me believe I’m doing the right thing.
Amazing story thanks for sharing…
My husband, a healthy, active Paramedic also passed away at home. 5 months after diagnosis. Myself a retired nurse was blessed to take care of him. 3 adult children also home. And we also celebrated with Baileys and stories. Dying at home isn’t for everyone, but I wouldn’t of had it any other way ❤️❤️
My husband of 54 years, passed away in our bed on 8-6-20, surrounded by our daughters, who are both nurses, most of the time, it was just my husband and me and twice a week, a wonderful nurse from hospice would check on him.. my husband was diagnosed with small cell lung and brain cancer, February 2019 and I was determined that he would not die in a hospital, but in his own familiar surroundings.. I was able to tell him goodbye and that we all loved him.. after he took his last breath, I chose to lay on his chest, until the funeral home picked him up, I felt so peaceful and it gave me some closure, as I have never touched a dead person and have always been afraid of death, now I’m no longer afraid, and sleep in the same spot my husband died, with so much peace…I only wish he were still here, in good health…I’ve never experienced pain so great, miss him so much, we were childhood sweethearts, and the love of my life!!
What a wonderful story to share. I also kept my husband at home and he died in the living room with his sons around him. My sister-in-law, also a nurse, helped me in those last few days with gentle love and compassion. I work in ER and see many instances of the raw intrusion into the most intimate experience of life, after birth, where it should be compassionate , dignified and supported by those who love you.
I look at that place in the living room where he died and am most grateful for the great privilege of giving Michael that last loving gift!
Thank you for all you have done and do! !! Ox
Thank you for sharing .
I lost my husband to Lungcancer 9 month after his diagnosis. I wanted to be sure to do everything right and I took care of him myself, I had a nurse come in once a week. But I was able to drain his lungs every other day and they taught me how to use the catheter. I had his bed in the living room and I was able to sleep on the couch, so I was with him at all times. So the the time came and we knew he is getting worse. I wanted him to die at home surrounded by his family and is exactly what happend 9 month ago today. September 5, 2017
Thank-you for this informative memoir. I am a friend of Taylor’s…I remember! All of you were so brave and Don’s legacy is going to change so many lives. Choosing how to die. Thank-you!
An inspirational account from a knowledgable and courageous woman. Both these attributes were key to provide the kind of care for a truly “dignified” end of life for her husband. May he rest in peace and God bless you and your children.
Hello I am so scared. My husband was diagnosed with terminal anaplastic thyroid cancer December. He wants to remain at home and I am doing everything possible to help his wishes. So hard to watch him deteriate so fast he can’t swallow he keeps telling me that he is scared. I just hold him but don’t know what to say.
I am so very sorry. I’m in a similar situation where my wife is dying at home from cervical cancer. She is very weak, confused and and scared. I am also very terrified. All I can do is hold her hand and kiss her and tell her about Heaven and Jesus and how I will see her again before she knows it. May God give us both comfort. She is only 31 and I am 32.
Our situations are so similar, but my husband is 34 and I’m 33. He was recently refered to hospice care after a five year battle with stage IV colon cancer. Praying for you as you navigate this incredibly difficult journey.
My husband is on hospice diagnosed w stage 4 liver cancer, I’m emotionally exhausted n have caregivers 24/7 but I’m supportive n as a caregiver by trade can only do small tasks. Im feeling at odds w everything, like a sad dream that I want to stop. I pray to Jesus. Time does not stand still. Im too sad n don’t know what to do
I’m going through exactly the same thing. My husband Is in the hospital and has less than 3 months. He can’t walk or get out of bed due to peripheral neuropathy. You know the rest of the symptoms. Hospital wants to send home with Palliative Care. I can’t imagine trying to look after him at home with help of homecare workers.
I’m exhausted and overwhelmed. I think he has to many needs to come home. And I have my own disabilities.
How are you doing now ?
I’m praying for you. I loss my husband last year August 29 of colon cancer. He was 46 years old. He sir in my arms at our house. Very sad. I know God is God and he is with us. My sweet husband is in heaven with our Lord and Savior.
My mom is going thru a similar situation, your story brought tears to my eyes, but also gives me strength. Thank you and God bless you.
Hi Sandra ,my name is Ana. I am currently going through same experience as you. My husband is dying from liposarcoma. He stop eating and is most of time sleeping.
And when he is awake it hard watching him just be there and be in pain. We have 3 small children which I can’t phantom how they are feeling of having to watch there father deteriorate.
It been so hard and praying is all I can do. I will pray for you both.