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


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34 comments

  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!

  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

    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.

  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.

    Louise

  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.

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