we are sorry to hear that your mum has had to ask the nursing team to adjust Lee’s medication, and that he is sleeping and feeling cold now. I cannot imagine how hard this must be for everyone.
It might be best to talk to those who take care of Lee medically to see what they say. You may also find the information on the Marie Curie website useful, especially the second section on this page, titled ‘What to expect at the end of life’: End of life information. It outlines the chances that can happen in the final weeks, days, and hours of life.
You are also very welcome to call the support line, which is staffed by Marie Curie staff (among them nurses), who will be available to talk through things with you. The support line is open until 6pm today, free to call at 0800 090 2309; more information here: Marie Curie Support Line.
Take good care, of yourself as well as your loved ones,
Hi Anke,
I headed home early Friday morning as my brother was so agitated. Lee’s doctor has been in every day, even weekends and put his agitation meds up. I asked Dr Buchan if i should go back to work Monday (today). She said that he is young (53yrs), heart is strong but as he is now sleeping most of the time, in the next few days Lee will eventually go unconscious and slip away. Dr Buchan said it is best to say my goodbyes now when Lee is still recognising me. That is what i’ve done and i’m just so heart broken.
Kind Regards
Fiona x
I cannot imagine how hard this must be for you. You have had a chance to say your good-byes while Lee recognises you. It sounds like his doctor expects him to sleep peacefully until he slips away now. It also sounds like you have done everything you can to support Lee and to make sure you could talk to him.
Your feeling heartbroken is a natural response to the situation. We are so sorry that you are experiencing this heartbreak. Have you returned to work now? I am wondering whether there is anyone you can spend time with or talk to during this time, someone who can support you? This could be a friend or acquaintance, in person or by phone or video call, who could drink a cup of tea and just be there with you for a moment. It may also be soothing to go for a walk, on your own or with someone, or spend some time in nature. It is very important to be kind and gentle to yourself.
As you know, the Marie Curie Support Line is here for you if you would like to have a friendly person to talk to. Please call 0800 090 2309 any time between 8am to 6pm Monday to Friday, and 10am to 4pm Saturday to Sunday, to speak with a trained Support Line Officer or a Marie Curie Nurse. Calls are free from landlines and mobile phones. You can also continue to post to this Community if that is helpful, any time.
My name is Marla; I am a nurse on the Information and Support Line. Whilst I am not permitted to give you advice and do not have any access to medical records, I can pull on my experience and knowledge to try and support/signpost you. Thank you for reaching out to us here on the Information and Support Line.
I am so sorry you are going through such a difficult and emotionally challenging time, it must be incredibly hard seeing your brother Lee deteriorate as he approaches end of life. I can see others have shared experiences with you and shared what may be of help to you, rightly so they have also shared there is no right or wrong way to feel whilst experiencing this. Please be kind to yourself and allow yourself to go through all the different emotions you are feeling without judgement on yourself.
From what you have said it sounds like Lee has an excellent GP supporting him and you all as a family, giving you sound advice and guidance. I would just want to share some information you may find helpful to know on what you might see as Lee approaches the final days/hours of his life. For anyone who has never experienced or observed this it can be worrying and scary at times, I hope this might help prepare you in some way.
As Lee sleeps more and for longer periods, there will come a point when he will no longer wake up or communicate and he will become unconscious. He may stop eating and drinking as he no longer has an appetite for food and his body no longer requires nutrition for energy. Good oral hygiene can alleviate any symptoms of a dry mouth or thirst and help keep the mouth clean and moist. Using a baby toothbrush with some artificial saliva gel can help with this, just gently sweeping around the mouth.
Loss of the ability to swallow can also occur at this time, as our muscles become weaker. This can often be when you may hear changes in breathing, saliva can sometimes pool at the back of the throat which can cause noisy breathing (sometimes called ‘the death rattle’). This can be normal and does not normally cause our loved ones any distress but can be distressing for those observing it. In extreme cases there are medications that can sometimes help, but they do not always help. Repositioning and a gentle tilting of the head to the side can sometimes help to drain any saliva pooling in the mouth. If you are worried or concerned if this is happening, please speak to the GP or nurse involved in the care of Lee.
You may also notice skin changes such as cold to touch, mottled skin or a blueish tinge around the mouth, nose, hands and feet (this can be harder to see on darker skin tones). Whilst this is a guide on what can or may happen, we are all individuals and as such you may see none, some or all the above-mentioned signs that will indicate Lee is at end of life and time may be short. You can always reach out to us here on the Information and Support Line for a safe space to speak to myself or one of my colleagues. You can contact us on 0800 090 2309. Take care Fiona.
Thankyou for replying Marla,
I’ve never had a family member with cancer and i’m finding it so hard to cope. It looks like my brother will pass soon and i don’t think i will be able to face the funeral.
Its nice to know that there is people on this site i can speak to.
Thankyou
Kind Regards
Fiona x
Good Afternoon Anke,
It was the hardest thing ever saying goodbye. It still may be long enough as Dr Buchan said Lee is young and his heart is strong. I returned back to work today but my heart isn’t in it As soon as things change i will go home straight away and always home on days off. The waiting is just awful and not sure if i can cope with the funeral. Thankyou for caring.
Kind Regards
Fiona x
It is completely natural for your heart not to be in work while in this situation. Marla has outlined what can happen in the final weeks, days and hours of someone’s life. I hope this information is useful, and you have this information ready for when the time comes to feel a little better prepared.
When I was anticipating my loved one’s life to enter the final stages, I found the wait very hard. I was advised to take things one day, even one hour, moment, or breath at a time. It was not easy, but knowing that this phase is not easy for anyone and being reminded to be very gentle with myself got me from one moment to another. I think it finally hit home when someone asked what I would do if my best friend was in this situation. I tried - imperfectly, but always - to be as kind to myself as I would be to a friend.
This forum will continue to be a safe space for you to write, if you like.
Good Afternoon Anke,
I spoke to Lee’s doctor this morning, she said his breathing has changed, in and out of consciousness and would be best to come home now if i want to be with Lee when he passes. I am home now, Lee is awake off and on but unable to communicate. He has no pain, is comfortable and just awful waiting on Lee to pass. But i am glad i’m here. Thankyou for just listening.
Kind Regards
Fiona x
I’m sorry to read about your brother Lee, and the changes in his condition. It sounds like an incredibly difficult and emotional time for you and your family. I hope it brings you some comfort to know that he is comfortable and free from pain.
I am glad you found our Online Community Fiona1, you’re welcome to share your thoughts here as often as you like.
Good morning Bonnie,
Thankyou for your response. Mum and i was up all night with Lee, breathing shallow and gurgling a lot. Nurses (BECS) came in 3times through the night to put meds in driver to dry throat up and agitation meds. Nursing staff have been great. Dr Buchan who comes in daily, said Lee’s heart is strong but there is huge changes. Dr Buchan is one in a million. Its awful just waiting on a loved one to die. I’m so glad to have online support from you guys. A huge thankyou.
Kind Regards
Fiona x
Thank you so much for getting in touch and keeping us updated. It must be so incredibly hard for you to see Lee so unwell.
You doctor sounds fantastic as do the nursing staff and we are so glad you have that support around you.
Please do feel free to keep in touch over the weekend if you feel it would help. You are so welcome to post on here and you can also ring our Support Line if you would like to speak to someone over the phone at any point. The number is 0800 090 2309 and lines are open 10am-4pm tomorrow, Sunday and the bank holiday Monday.
Good afternoon to all my friends. Lee passed away peacefully at home with his family at around 6am this morning. I am so glad i came home on Thursday. I am heartbroken and now have the hardest time of arranging a funeral. Thankyou so much for all your support and kindness.
Kind Regards
Fiona xx
Thank you for letting us know that Lee passed away peacefully surrounded by his family and at home. I am so sorry for your loss.
Struggling with the next steps for arranging the funeral is a very common experience, and Marie Curie’s support can continue during this phase and beyond, if you like. If you feel ready to read about the practical steps that follow a loved one’s death, you will find some information via this link to the Marie Curie website, about halfway down the page.
I also just want to take a moment to let you know that whatever you are feeling at the moment is completely natural. It can be very discombobulating, and taking things one moment at a time and looking after yourself, being gentle and kind to yourself, and looking for support, as you have done, are some ways in which you can support yourself at this time.
As always, this Community is a safe space for you. If you would like to talk to someone from the Marie Curie Support Line, this is available at the usual hours at 0800 090 2309.
I’m so sorry to hear of Lee’s death, as you say, so heart-breaking for you.
I can imagine that organising the funeral and everything that comes with it must feel very overwhelming right now.
I juts wanted to write and echo Anke’s words- try to be kind to yourself and go at a pace that is manageable for you. It can be so hard to know what you need or how you feel in these early stages and this in itself can be extremely disconcerting but it is also perfectly natural. We will continue to be here for you at Marie Curie so please do reach out if you would like to.
Take good care,
I am so very sorry to learn of Lee`s passing, but so very glad to hear that you and the family were with him in his last hours. It has been such a traumatic time for you having to witness Lee is such distress, you can now rest in the knowledge he is at peace. Arranging a funeral is a big task and hope that the family will be supporting and helping you with the arrangements. You need to take care of you too though, and try to find some quiet time for you to reflect and process your feelings. This is a safe space as you know, so please feel free to make contact at any time. The Support Line 0800 090 2309 is always there too, and are open 10am-4pm. Thinking of you at this sad time.
Good morning Yvonne,
I would just like to say a huge thankyou to everyone for listening and being so supportive.
I am going home today as Lee is ready to view and i want to say a goodbye, that i’m always here for him and put some meaningful things into his coffin so he is not alone. Lee’s funeral is 16th June.
Having you guys to speak to has really helped. Thankyou.
Love
Fiona
We’re sorry to read about Lee’s passing. We’re thinking of you and your family during this difficult time.
Going home and putting some meaningful items in Lee’s coffin sounds like a lovely idea.
As Anke has mentioned, we have a lot of information on our website about the practical things to consider after someone has died, including arranging a funeral. If it would be helpful, you can read more here: How to arrange a funeral | Marie Curie. If you’d like to talk any of this through or have any questions, our Support Line is here to help.
Good Evening,
To All My Friends.
On Thursday I went home and went with my mum and dad to see my brother Lee at the chapel of rest. We put some lovely family photo’s in the coffin as well as a can of coke, Kopperberg and wine gums which are all my brothers favourites. The time with Lee was sad but at the same time lovely. We were able to say lovely things to Lee, i said that my last German Shepherd Farrah would look after him as well as Granny mcGregor, she was a nurse. I also asked Lee to visit me as i truly believe that spirits visit their loved ones. Its been a week today since Lee passed and funeral is 16th May. Once again, thankyou all for your support, which means so much to me.
Lots of Love
Fiona
Thank you for sharing such a personal and touching moment with us. It sounds like your visit with Lee was filled with so much love, and I think the photos and all of his favourite things you placed with him were such beautiful tributes. The love you have for your brother shines through every word.
I’m sure hearing you speak to him meant a great deal, and I hope the memories of Lee, along with the love of your family, bring you comfort in the days ahead.
Thank you for allowing us to be part of your journey and for sharing your precious memories of Lee with us.
Hi all,
It will be 3weeks on Saturday since my brother Lee died. I have bought my mum and dad a Name Your Own Star from the proper Star Registration and named it “Lee Our Precious Son”. My mum had both her cataracts done today, i phoned her and she was so nasty to me. Said i should be here, i’ve done nothing and she has no one, her best friend and favourite Lee isn’t here now but don’t worry i’ll manage on my own. Its so hurtful and i wish i was the one that passed away. I want to show my respect at my brother Lee funeral on the 16th June but i think she’ll be awful to me. Don’t know what to do.
Needing Advice
Fiona x
xx
