Last month I wrote about my mom dying. Mary Hughes (nurse leader extraordinaire) from PEI wrote to say that she wanted to hear my thoughts on being a daughter and a Hospice Palliative Care (HPC) nurse.. how was it easier? in what ways was it harder?
I have reflected on this over the past few months.. here are my thoughts of the moment. I am interested in hearing your thoughts, and insights. Please either respond to the blog or write me an email directly.
In what way was care easier because I was a HPC nurse and a daughter?
As a HPC nurse, I know that death happens. I am not surprised that someone can get sick, be diagnosed and die within a short period of time.
I know about symptom management and use of medication and other comfort measures. I know it is helpful to take medications to prevent pain rather than chase it when it has escalated. I know that breakthrough doses can be taken if the pain is not controlled, and that dosages can be increased to provide pain management.
I know about decreasing appetite, and I know that the dying do not die because they eat less, but that they eat less because they are dying.
In knowing these things, I provided care, I tried to anticipate changes, I requested medications, route changes, and equipment in advance.
“Knowing” the basics of hospice palliative care surely made the pathway familiar and made it easier to care.
As a nurse I knew that hospital beds could fit more than one person. On a few occasions, we climbed in and napped along side mom.
In what ways was caring for my mom more difficult because I was HPC nurse?
As a palliative response nurse, my work for more than a decade was in responding to people who were dying and who were in crisis of some kind, either symptom management, or psychosocial. Knowing that crisis can and do occur, I wanted to prevent even the possibility of discomfort. This was difficult when I wanted to balance her symptom management with the concern of siblings who might have been concerned that her decreased level of consciousness was related to medications. On the one hand I wanted her to be comfortable, and on the other hand I felt the incredible sorrow of realizing that she was no longer able to respond. I felt the tug between protecting her and the desire or hope that we could help her be as alert as possible.
Working with loved ones who had other ways of doing things was difficult at times. It was challenging. We had to be committed to the shared goal of pain management, and be flexible on the plan of care to achieve that goal.
A most difficult challenge for me was when my mom developed a few skin wounds. I felt I could have prevented this had I been more adamant about regular turns.
What was unique, but not positive or negative about being a HPC nurse and daughter?
Entering into the caregiving experience, I was aware of how difficult it is to “be family”, to sit and to wait with the dying. I came to understand this on an even deeper level.
I thought of the term “difficult family”. I did not want to “be difficult”. I did not want to experience contention, nor did I want to inflict contention on the health care team. I thought more than a few times of my prefered term “difficult situations” and just how very challenging family caregiving is.
As the HPC nurse/daughter, I wanted to respect the requests and suggestions of my siblings with regards to care for our mom. I wanted to respect the different styles of grieving and communicating. If they were clear about how they wanted something done, I wanted to try and be helpful. (And though I wanted to do this, I was not always successful!)
Mostly, I wanted to prevent my siblings from suffering. I hoped that I could provide care and act in a way that would make it easier for them. Again, I was successful in this, as it is painful to have a mom die.
The struggles to balance, juggle and respect the opinions and needs of family members was perhaps the most difficult. In retrospect, a few months later… I think that we worked pretty well as a team. As siblings we had gathered from around the world, with such different personalities and experiences. Throughout her last months we provided our mom with great support. She died pain-free (her first priority) at home, at the far end of a rather isolated island,with all of us present.
Being a HPC nurse and a daughter, had its challenges I am sure, but overall, I would not have traded that expertise for anything!
Thanks so much for you comments. I am a retired RN working as the hospice services coordinator for Alberni Valley Hospice/Ty Watson House. I am anticipating the deaths of both my parents as they are in their 80’s and their health is failing. I know they will receive great care from the palliative care team here. I find myself being more concerned about the different personalities of my siblings and how I expect they might grieve the loss of one or both parents. I expect, like you, that balancing and respecting their opinions and needs will be challenging because they are both very opinionated. We have been having discussions with my parents around their advance care planning and I think this will help. Just reading of your experience gives me faith I can get through it as well. Thanks again.
Thanks for your comment.
First of all, I love your confidence in your team “I know they will receive great care from the palliative care team here”. How wonderful to feel that way about your team! Bravo. I loved feeling confident in the team that is caring for my loved ones, friends, and patients! It is a wonderful thing to be able to say, “I am leaving now, but we have a great team of nurses, home care nurses, and they will take great care of you”.
You mention siblings who are opinionated. Writing from the perspective of one who is very opinionated, especially about how to care for people who are dying… I know how painful it is if I am not understood.
Elizabeth Causton often says that rather than criticizing and labeling people, we need to ask “What do I need to better understand?” In understanding each others goals and hopes and fears and concerns, it is often easier to find a common thread for care plans.
So glad that you are in conversation with your parents. The more you understand of them, and the more that you record in either written word or video/recording, the easier it may be to reach consensus when/if your parents are no longer able to advocate for themselves.
I am so very opinionated! I have a healthy dose of concern for those who get to work alongside me, care alongside me, and care for me! It is a wonderful thing to be opinionated, and it isa challenge for oneself and for others when you are stuck in your opinion if you can not see other ways to look at things.
Thank you for sharing this vulnerably, Kath.
You (and perhaps your siblings with you, if they were up for it) are in a great position to write an article on Creating Alignment Among Siblings When a Parent is Dying. This kind of conversation is one we need to have many, many perspectives on. And your perspective, as both a daughter and Hospice nurse and educator, is very valuable.
Questions I believe most boomers would like to have discussed in such an article include:
allowing the dying loved one to be “in charge” of their experience and state their wishes
situations to be mindful of, where it might be harder to create alignment (why, what to do about it)
creative ways family members can carry out their dying loved ones wishes, and support each other in their grief work
Thanks again, Kath, for a great article. (More! More! :-))
what are the biggest obstacles to sibling alignment
Thank you for your comment and your suggestions.
You have some interesting ideas that you have shared.
“Creating Alignment Among Siblings when a Parent is Dying” Wow. What a topic to explore. My first qusetions is: Do you think this is possible if a family has not chosen alignment before?
Is our goal to “get alignment”?
I can see assisting with this process if the siblings come to us and ask us for help… but if they are able to get together to ask for help they may not need our help.
I wonder if there is a family therapist, a counsellor who can address this topic.
You have a background in helping to create spaces for people to reach the goals they want. I wonder if you have comments about the physical space in which we provide care for the dying, and how the physical space can help to create alignment or understanding.
Thanks, Kath, for sharing these most intimate memories and reflections. I will be sharing them with the whole Palliative Care Team here. Your honesty and openness are inspiring.
Please ask your team for their ideas and suggestions. Please see Mary Hughes comment, and my response to Mary. Does your team have any suggestions for us when we are not only nurses, but also family members? How do we know what voice, what hat to wear when we respond to questions? HOw to increase our awareness on this?
All the best,
Kath, Thank you so much for sharing you thoughts, strengths and concerns. I like you supported my Dad as he ended his journey, Dad in the very health care facility that I managed. I only have one sister and she trusted me to do what was correct for Dad as she was a teacher. My concern was how I answer some of Dads questions as a nurse or as a daughter and sometimes I forgot that I was a nurse and answered as a daughter only to find I should have put my nurses hat on. I have used what I have learned from this to teach the many students that have come through my palliative care program in the hope that they will be better care providers. I’m sure you will use your experiences as well as you teach others. Take care and hope I’ll see you at the national conference. Hope to get to ottawa
What an excellent point you make. I did not address how it was for the siblings OR my mom to have me as a nurse and a daughter.
Answering questions as a nurse was NOT always appreciated! There were times when a sibling would specifically ask me NOT to talk as a nurse or as a teacher. And there were times when my mom commented on how my responses differed when I was the daughter or when I answered as a nurse. THis is more than not using the nursing lingo, this is about the entire approach.
You are so right! This was a piece of the puzzle that I had forgotten about. Perhaps my siblings will comment on this. They were probably more aware of this than I was.
Do any of the other readers have suggestions, ideas, things for us nurses to think when we are both nurse and daughter/sibling.
Thanks Mary. See you in the Ottawa!
I so appreciate this honest sharing Kath, thank you. I am an Apprentice Funeral Director and daughter to a mother living with the dementia. I can foresee a time when I’d like to reflect on how I be these two roles simultaneously. Right now, its too painful and I’m too overwhelmed being daughter, apprentice, mother… oh yeah, and wife. This too shall pass.
You are carrying a heavy load right now. I look forward to hearing about your experiences in Funeral Services as an apprentice and later in your profession! Meanwhile, I wish you peace and joy as you enjoy your daughter, hubby, and find strength in caregiving.
Hi Kath, I want to thank you so much for sharing so transparently about caring for your Mom during her palliative experience. Just one year ago my mother-in-law was on the palliative care unit and we walked through three weeks in neurology followed by three short weeks on the the palliative care unit with her before her death. While she was not my mother, and I so appreciate that that experience is very different, so much of what you and others have shared has been a mirror to what I experienced as a once palliative care nurse and then family member. I would say that my observation skills were heightened, my fears less, my ability to know what was coming next and the ability to talk with and hopefully reassure her while she was conscious and yes, unconscious as well was very helpful. What I stood in awe of was the creative ways my extended family members chose to share with staff who my mother-in-law was before they “met” her. No suggestions from me here. They brought in her wedding picture, pictures of her with grandchildren and an afghan she had knitted. I was also humbled and so grateful to the palliative physician and one particular nurse who shone in their passion for what they did professionally on a daily basis. Although I had to hold back on my opinion on the restraint policy I saw that protocol was followed and my questions answered with respect. I moment I would like to share came when I was doing my mother-in-law’s nails for her the day before she died. The palliative care physician arrived and was observing my actions briefly before she said to me, “I have four sons and I only hope that one day I will have a daughter-in-law who will care for me when my life is ending as you are caring for your mother-in-law now”. As a mother of sons myself I will never forget her words. My mother-in-law was a feisty little woman and we occasionally disagreed with feeling but my love for her grew through her illness and my trips with her to the doctor and finally at her bedside. I am forever grateful that I learned so much more about palliative care through this experience. I wish you memories that continue to heal in the days ahead Kath. Thank you again.
What a lovely story of learning, loving and caregiving.
The question I am contemplating today is the one about speaking from the perspective of a daughter or a hospice nurse. Do you have any thoughts on this? Does anyone have thoughts on this? I think this is one of the areas that my family might have prefered me to do differently. (I will ask them for their input).
All the best to you Liz, and so glad that you are teaching Personal Support Workers how to provide great care for the dying and their companions/loved ones.
As my sister I so much appreciated your role as both a HP nurse and a daughter and sister. You did have the ability to change hats. We were in the best hands. Mum called you / us the DREAM TEAM. She could not have died a more beautiful serene death. I was always secure that you and our doctor-Brother Mike were giving her not just the best, but the VERY VERY best care.
You knew when to ask for outside help, doctors, home care nurses, equipment. You knew when she needed this or that kind of meds. You knew if she needed long acting pain reliever or short term –
But it did not really matter, the Island doctor said just coming into this house, you could feel the most important thing – the love and warmth. That was possible because we were in your good hands. You had done this before. We could releax and just BE.
And I loved working with you on bedside care. You with your Canadian nursing skills, me with my old Danish nurses aid skills. What a combination. We had fun, we laughed, we cried, we cared, and mostly, you were the foundation of making all of this happen. Without you Kath, it would have been so very different.
When did I not want you to be a nurse? Never. I did not need to know about all the pills – but I wanted to be able to give the right meds when you were off for a bit, SO I wanted to know it. But that was no hassle.
I appreciated you being able to give us an idea of a timeline,… “No, Mum will probably not be here in the summer, this is going fast.”
I appreciated you showing us that we could lie beside her in that bed, it gave us the last opportunity for closeness, even though she was “going”.
Kath – you did an amazing job, without you it would have been so very different. Thank you forever, from a deep place in my heart.
Your sister Barb from Denmark
What a beautiful comment to read.
It is interesting to share these comments and have this conversation in a public arena, but from the personal emails I have received and the comments to this blog, it is clear that discussing this is helpful.
Again, I go back to the reflection on the term “Difficult Family” and the feeling that families caring for the dying are “doing difficult things” and that emotions are going to run high, and challenges are going to occur.
When I felt so badly about the bedsore, and told the physician how awful I felt, and asked him to look at it, the night before she died… he said, “No I am not going to look at them. You need to see what is happening here, and look at the big picture. Your have all provided beautiful care, and when you look at the big picture, the little things don’t matter”.
His comment helped me to let go of my concerns about failing in a few of those “little things”.
Although I will continue to strive to provide excellent care in the “little things”, it was a good lesson on remembering the “big picture” items.
From across the continent, and across the Atlantic,
And exactly the bed sores. “If we only had known” that Mum was going to live on for so many days, we would have turned her more regularly. But at one point, when she was sleeping so peacefully, looking like death was so imminent, we decided not to, because some of us thought we would disturb her too much, and why bother her? Well – you listened and respected our concerns – Why bother her? Because you have respect and because you do listen. ANd because her death was so imminent. But she just hung on for so many more days.
If we only had known then, all that we know now…..
What I do know is those small bed sores brought you pain but did not hurt Mum one millisecond. Because your medication was so special and she was so covered.
I too lost my mother. it was back in the 70’s and I was 23 and been nursing for 2 or 3 years. I worked on a surgical unit at the time. Now I am a home care nurse in the north and we do palliative care along with a lot of other kinds of nursing. I am also a “few” years older and now have my own children. I read your blog and responses with interest both as a nurse and as a daughter and a mother.Numerous thoughts come to mind but I’d like to respond to your query about the nurse/daughter role.
Nothing in life is simple but sometimes we need to simplify things to better understand them. Kath, you are a daughter who is a sister, who is a nurse, who is a palliative nurse, who is a wife, who is a mother, who is a friend, who is a teacher. You are all these things, and I’m sure a lot more. If you can see this as a mathmatical equation you will realise that removing one of the elements gives you a different answer. Thus it is all of these things that make you who you are! You bring the sum to the table, no matter which table you happen to be at. And judging from the response of your sister, that is who they saw loving and caring for her mother.
I know in my own situation the “difficult moments” that presented, became non-issues once all parties took a moment (or months) for a little perspective.
Take a moment now and then to recognise you are/were true to yourself, who you are and the love among all the players grows. The experience gained becomes more that is available to give.
We appreciate that you are able to add to our lives by giving of yours.
Lovely to hear from you, from the North to Victoria!
As I read your sentence about all the different roles, I felt that complexity, and was taken back to the situation, reminded of the challenge of trying to attend to all the needs and hopes and wishes. Though any one of the individuals involved may not have felt heard or understood, the desire to understand was surely there.
The mathmatics of it all… remove any one item and the answer is different. THat is an interesting thought.
Thanks for sharing your reflections Marg!
All the best to you as you care for people with such diversity of needs.