Dying at home: What I learned from my husband’s death

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  1. Garce

    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.

  2. Alyssa Clark

    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!

    • Annemarie Lapan

      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

  3. Marie Moore

    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!

  4. Pat rouse

    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 ❤️❤️

  5. Jacqueline Austin

    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.

    • Maureen Taylor

      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.

      • Jennifer F.

        Powerful, Maureen. We should all be so well loved and cared for.

    • Marina M.

      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.

  6. Paul Adams

    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.

    • Maureen Taylor

      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 🙂

  7. Debby Copes

    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

  8. Deb Mousseau

    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.

    • Maureen Taylor

      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 🙂

  9. Sherrill

    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!

  10. Michael Rachlis


    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.

  11. Maureen P

    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.

  12. Denise

    Thank you for sharing something so personal in order to educate others.

  13. Ann Collins

    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.

  14. Michael R

    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.

    • Maureen Taylor

      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.

  15. Steve Renolds

    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.

  16. Louise Belanger

    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.


  17. Margaret McGregor

    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.

  18. Debbie G

    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 🙂

  19. Helen Martin

    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.

  20. Kelly

    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 ❤

  21. Cheryl Rothenberg

    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.

  22. Joyce Cameron

    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.

  23. Sharon Anderson

    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.

  24. Nancy Payeur

    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.

  25. Myrna Esguerra

    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.

  26. Sylvia

    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.

  27. Health Lobby

    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.

    • Mary Carther

      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.

  28. Mary Carther

    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.

    • Maureen Taylor

      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.

  29. Karmyn Kelley

    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.

  30. Jill Pringle

    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!

  31. Susan Killin

    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.

  32. Lori

    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.

  33. Paola

    My husband die at home and I’m scared to stay inside the house .

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