How to make a good death by Justine McCuaig

My Mum died on June 6th 2017 at 11 45pm at home asleep beside my Father while he held her tight.

My overwhelming and lasting memory is of going up to offer Dad yet another cup of tea, (my family home by this time had become like a scene from Eastenders with endless tea becoming a cure all for our woes) and finding them both asleep in front of the telly, holding hands, as if it were any other night in their lives together. By this point, knowing mum was soon to leave us, I chose a whisky over tea while my sister drank Mum’s Tia Maria and we laughed at our naughtiness downstairs.

We had been caring for Mum for 4 months at home. She had been diagnosed with idiopathic pulmonary fibrosis a few years before and her lungs progressively stiffened up despite her objections and indignation at the condition. Everything else was in perfect working order!

Mum was very pragmatic about her diagnosis and we often talked about its progression together with and without my Father. I asked her when her condition worsened if she thought my Dad had “got it” and understood that she had terminal disease and was not going to recover. The next day I visited and she said “yes he’s got it….I sat him down and told him that I wanted buried in the garden and listed who I didn’t bloody want coming to the funeral  so you don’t need to worry about that anymore!”

Although as a family we liked our privacy from the outside world, we were not particularly shy or private people at home and regularly discussed all manner of things and shared experiences. No topics were ever out of bounds for us and I had the privilege of being raised by tolerant humanitarians with a good sense of humour and a love of dialogue, music and life. We have always been able to talk about the big things with ease, disease, mental illness, romantic woes, religion and politics but struggled with the smaller things and general displays of affection. We loved truly and where truly loved but it was unspoken generally and wrapped up with rather woolly “oh you knows”

Cuddling was not a regular thing either (for no good reason other than we didn’t really do it much) This physical distance completely disappeared when I began to nurse my Mum and provide her with regular personal care. I was more unsure about how I would feel about this than how she would feel about it even though as a nurse I was simply using the tools of my trade.  To my delight caring for Mum (and Dad) was one of the most wonderful experiences I have ever had.  The physical closeness and honesty was liberating for us both. We had so many laughs (normally about things we really shouldn’t laugh about!) Gift giving changed and although a commode wasn’t everyone’s idea of a great birthday present, my Mum loved it, especially with the balloon attached.

To be able to wash my Mum, do her hair, paint her nails all the time chatting about this and that with up to 5 grandchildren lying alongside her at “Granddads side “ was a unique shared experience which we all enjoyed up to the last week of her life. Grandchildren came and went as it suited them without obligation and new routines developed for us all which were played out wholly to our tune. Nail painting changed to pressure care and symptom control but there were no restrictions on visiting, no alien environment or hospital smells, no distance to travel, no reduction in privacy or dignity.

Just home – where the heart is, and where sitting on the bed is actively encouraged!

Of course we couldn’t do this without support. It was great that I was able to use my nurse’s tool box to be my family’s advocate, to explain things lost in translation and to explore mums options. However it was the cohesiveness of our systems, the excellent communication between teams and professionals actively hearing what the patient aspired to and facilitating those aspirations that really worked for my family and resulted in such a good death for my Mother

NHS Dumfries and Galloway has the most outstanding staff members across all disciplines. With thier input we can successfully choose our own package of care and be fully supported in that choice. Anticipatory care planning and social care integration have the potential to really transform the patient journey and is not something to be afraid of but rather to embrace.

 However all of these services need to be heavily invested in to meet the expected demand from   an aging population. Without continued investment and service development, NHS Dumfries and Galloway will not be able to fulfil this ambition and enjoy the success that my family had.

Mum was admitted to DGRI 3 months before she died as an emergency admission and was discharged from ward 7 with a complete package of palliative care and specialist community respiratory support within 32 hours.  All of her drugs and letters were ready at our agreed   discharge time, the domiciliary oxygen was arranged and delivered and referrals completed for the McMillan, Marie Curie Nursing services and Community Respiratory Specialist Care.  Her DNR was signed and she waved it under the nose of anyone who was even vaguely interested in reading it. It remained pride of place on the bedside dresser as it was very important to her that her intentions were known. Everything my Mum did was delivered with humour and even this got a comedy slant!

The Kirkcudbright District Nurses introduced themselves and ensured that their door was kept fully open for when we needed their help and support. They responded promptly to any requests and where always available at the end of the phone to discuss Mums needs as they arose. Our Specialist Respiratory Nurse visited regularly.  When Mum developed a chest infection he promptly liaised with the consultant from our dining room relaying Mums reluctance to be admitted but advocating   the need for her to receive appropriate treatment which could prevent her condition worsening. Although her condition was terminal   there were still things that could be done to minimise her symptoms and prolong the length of her wellbeing. Mum agreed that if things got rapidly worse she would potentially consider IV therapy in hospital but would initially hedge her bets with tablets, lots of tea and nebulisers. She started her antibiotics orally that afternoon and recovered and remained well   long enough to see her beloved swallows   return   from Africa to nest in the garage, enjoy the spring flowers from the garden and support the children through their exams.

The Occupational Therapist ensured Mum had all of the equipment she needed when she needed it. If a piece of kit was ordered it was generally   installed within 24 hours. The Equipment Delivery Staff ensured that we knew exactly how to use it after they had installed it and answered all questions fully and in a voice loud enough for my deaf Dad to hear! They ensured he knew who to contact in the event of any problems. Mum had everything she needed, a bath chair, a stair lift, a stand aid, a pressure bed.  Visiting relatives from the Deep South stood with mouths wide open in disbelief at the care and support my family were receiving and began to seriously consider relocation. After Mums death the equipment was collected promptly but respectfully and was almost symbolic of starting life without her.

We did need the District Nurse’s help more regularly in the days running up to her death and because they had developed a slow growing respectful relationship with my family they were welcomed in like old friends.  They encouraged me to be Justine the daughter rather than Justine the nurse which was invaluable advice. They looked after us all, and talked us through every stage or change in Mum’s condition. Most importantly Mum thought they were great and that is, of course because, they were.  She was so interested in people and life and living that she became just as invested in how they were doing as they were in her. This was especially true of the student who approached and completed her finals during mums care. She told Mum when she   successfully passed as she knew it was important to her to know despite Mums condition rendering her uncommunicative at that point.

However we all knew she was dead chuffed!

Mum received reflexology   and head and hand massage in her bedroom as part of her palliative care package which was a new experience for her and one she really appreciated. What she enjoyed as much as   the treatment was her was that she had another person to communicate with and to learn from. She loved engaging with people more than anything. It gave us all something to talk about too. Even then life remained interesting with new experiences to share.

When Mums condition deteriorated to the point of suffering the District Nurses and GP promptly began her syringe driver to minimise her symptoms. I had discussed this often and in detail when Mum asked about “what next” and she fully understood that when her symptoms were controlled this way, she would be less awake and aware. She made a very informed choice when the GP prescribed it and her consent made me feel content with that course of action. She had had enough. Any other GP may have been phased when she asked if he was “putting her down,” especially when after administering an injection she said “No, no I’ve changed my mind” with a wicked twinkle in her eye!” However Mums GP knew her well and knew that with her humour she was trying to make a difficult job easier for him.

The Marie Curie nurses would phone regularly to see if we needed help over night which was very comforting. In the end the nurses attended the family home twice. Once to administer breakthrough medication in the wee small hours on the day the syringe driver was started (all the way from Dumfries – a round trip of 60 miles) and the following night at 10pm for their inaugural sleep over. Mum died shortly before midnight that night and Dad then made the long walk to the spare bedroom to ask our guest to confirm that she had gone.  Having her there at that time was invaluable and over the next few hours we all chatted and laughed and cried while we waited for a registered nurse to certify Mums death.  The care and support we all received that night was beyond excellent . Mum stayed the night, there was no rush for her to go anywhere and we all spent time with her before she left us mid morning. Downstairs my sister and I repeatedly heard my Dad’s footsteps as he came and went into their bedroom to check that she was really gone.

And she had gone,  Mrs T had left the building. Although we were (and are) devastated we have all reflected our relief that she had suffered so little in the end and that she died where she wanted surrounded by the people she loved . Knowing this has filled our sad hearts with a warm feeling knowing we did right by her and in time this will be a great comfort to us.

Janice M 1

Justine’s Mum and Dad on Crosby Beach 

Justine McCuaig is a Health protection Nurse Specialist at NHS Dumfries and Galloway

28 thoughts on “How to make a good death by Justine McCuaig

  1. Justine, thank you for sharing your and your family’s very personal account of the last few months of your mothers life and her final passing. Like the title of your blog you have illustrated that it is possible to have a good death in the place of ones choosing when all members of the team pull together and truly listen to patients and families. Thank you.

  2. Justine, I am sorry for your loss, nothing can prepare you for the death of your mum and I am thankful that she and your family had such a positive experience. Thank you for having the courage to share such a personal story, I know that it will inspire us all to work even more to ensure everyone’s precious family & friends have a good death

  3. Justine thank you so much for sharing such a beautiful personal story. Your description brought a tear to my eye. Thank you.

  4. What a beautiful, honest, moving & emotional post Justine. We should be very proud of our amazing & caring workforce. However, the thing we should be so proud of is the impact of our healthcare on your mum & her loving family. A good life followed by a good death is what we all strive for but so many of us fail to achieve. Your communication of this devastating time, written about with humility & dignity is immensely compassionate & very emotional to read. This is a reminder to all those viewing this post of the positive influence our healthcare can have on our patients & their loved ones. Your story will remain with me for a long time but I thank you for that as it reminds me how wonderful it is to be a nurse.

  5. Thank you for sharing your experience Justine, I took a lot from hearing about all the good and the love around your mum at such a challenging time.

  6. Justine, this is a beautifully written and very honest and brave account of what I know will have been a very difficult time in your life. It resonated with me so much as we had similar experience with my mum in law and created so many lasting memories in the last two weeks of her life by the family doing similar to what you describe here. I had the privilege, and yes I view it as a privilege to have cared for my mum in law in such a personal, loving and most of all bespoke care to a beautiful lady. In reading your story, I think you feel the same.
    This was all made possible for us by the prompt response by the local NHS who put everything in place as when mum was asked what could be done to make things better for her, she simply said “Home”. This was the last word we ever heard her say and most importantly of all her wish was granted.

  7. It’s never easy losing one of your parents. It took courage to write this blog I’m sure. I’m pleased that the care your mum, you and your family received was outstanding. Had a lump in my throat reading this. Take care.xxx

  8. Thank you for sharing, written with such honesty & compassion. How lovely for your Mum & all of you that she had a good death in the place she wanted to be with those she loved. Hope your loss is made easier by knowing that .

  9. Justine, what a lovely blog about your Mother and the journey you and your family had. It was so nice to hear that she got excellent care when it was required and to the end of her life. Brought a tear to my eye. I hadn’t realised that your blog was so personal when we spoke earlier. Take care xx

  10. Justine – your blog has moved me to tears this morning but, most importantly, reminded me why my job is so important and why we need to continue to strive to do everything we can to ensure our staff, patients and their families have positive experiences and outcomes with health and social care services. Thank you for sharing.

  11. Thank you for sharing this very personal experience Justine. What a lovely description of a very sad, but positive experience for you and the family, and heart warming to hear about the kindness and compassion that your mum was shown during this time. It’s very sad that not everyone’s time at the end of their life is so positive. It brought tears to my eyes as it reminds me very much of the experience we had with my mother in law 3 years ago. Best wishes to you and your family.

  12. What an honour for you all to have been there with your Mum during her last few weeks and days. Thank you for sharing your Mum’s story. When my own Mum died 13 years ago I had to continually remind myself to be Fiona the daughter; so wise words indeed from our community colleagues. Take care of each other xx

  13. What a lovely read Justine, so honest and brave.
    It is possible to have a good death and it appears that you and your family enabled your Mum just that. Time is so precious and the final days more so and I loved reading about the intimate times you were able to spend together.
    I wish I was brave enough to my daughters story on paper. We let her go on 5th June 2010 and despite having only a few weeks from diagnosis to letting her go I will cherish the times I spent with her in ITU. Helping her eat, watching desperate housewives, washing her hair and helping with bedbaths to supporting her on the commode. I even was allowed the privilege of washing her after she died.
    I too am a nurse, have been so for a long time and am so glad to have been involved in her care but I realise it’s not something everyone can or would do but for me it was the right thing to do.
    Many knock the NHS but I like you found the care, concern, compassion and dedication is what helped us enable good death too.

    My Mum died in DGRI last January after a massive CVA and likewise I was able to spend as much time as I needed to say goodbye and she was able to die with great dignity.

    Best wishes and hugs.

  14. Thank you for sharing your family’s story, I am so glad to hear your mum was able to have a good death at home – exactly where she wanted to be. Heartfelt condolences to you and your family.

  15. Heart warming story – pleased to say we had a very similar experience here in Northumberland last November when my husband Peter died at home . In the end he just slipped away peacefully, while our two sons and I held him close. God bless our fabulous NHS, social services, and Macmillan nurses who got us through it all.

  16. Justine what a beautifully written, very moving & personal story – thank you for sharing, sorry for your loss xx

  17. I read this poignant, moving and detailed account of your mum’s passing. I have just lost my Dad very suddenly on 18th June 2017 – Father’s Day! He too had been diagnosed 2 months ago with a tumor in his lung and had radiotherapy treatment which had helped. Initially he had been told a year however things were then a bit more positive. Unfortunately we dont know why he died so suddenly, it wasnt meant to happen. Dad didn’t have the same support as your Mum had and we did try very hard to get it. His specialist respiratory nurse was great however 76 miles away. Seems to be in Wigtownshire the resources are not as forthcoming. Both herself and the Consultant were shocked to hear what happened. Maybe we didn’t shout loud enough or didn’t know where to go. As a family we are now going to make sure Mum is looked after. Too late for my poor Dad.

  18. Hi Justine. Your article is such a tribute to your mum and also all who cared for her. I completely agree with the excellent palliative care the staff in D&G provide. My dad died very peacefully at home surrounded by his family mid May. I am a cancer nurse specialist in Glasgow and was just blown away by the standard of care and support we all received from the Doctors and nurses in DGRI, to the community GP, District nurses and their Healthcare Assistants to the Macmillan and Marie Curie nurses. I couldn’t believe that any equipment required was delivered within 24hours and promptly collected when no longer required. Nothing was too much trouble which helped minimise any stress allowing us to focus on spending time with dad.

  19. Hi Justine.
    A lovely account of your mums final months, thank you for sharing your experience. It is great to see palliative care so well utilised in person with a non-malignant condition.

  20. Hi Justine
    Such a lovely article. Thank you for sharing it with us. Loosing some one close is always hard but ‘a good death’ is very possible as is obvious in your story and for my Dad when he passed away.
    XX

  21. Thank you for sharing your famiy’s story. It was moving and beautiful. It affirms the compassion and skill of people who care in our services.

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