AD – This is a collaborative post but all thoughts are my own
TW – Death, end of life care // Today’s post isn’t going to be a particularly joyous one but it is one that’s important. Earlier this year, I spoke about how to plan a stress free funeral. It was my first time really writing about such a sensitive and serious topic that more or less every single person reading would be able to relate to in some way.
Photo by jessie daniella on Unsplash
As much as I love using my blog and platform to share gift guides and talk about my love for Autumn, I think it’s important to talk about the serious stuff too. Because we’re all human. Regardless of what our blogs are about, we’re all going to experience the bad and the sad times in life.
And if anything, these posts just help you feel like you’re not alone.
So today I want to chat about end of life care. I know, heavy. But stick with it. We lost my Granddad last August (2019) and he had end of life care for around 4 months. It was a tough time mentally and emotionally. Especially as some things happened during those last 4 months which probably shouldn’t have. Which I won’t get into.
Most people will experience end of life care to some degree in their lives. Whether that’s for themselves, a family member or a friend. What exactly is end of life care?
End of life care is care people receive from hospitals, hospices, care homes or community nurses (to name a few) who are in the final days, weeks or months of their life. End of life care allows people to be as comfortable as possible and live as well as possible until their death.
On the assumption that you’re not a nurse or doctor yourself, how can we help a loved one with their end of life care?:
Know their wishes: When going through end of life care with a loved one, it actually gives you the chance to establish their wishes for their funeral and how they want things to be. Which, compared to the sudden loss of a loved one, is actually a blessing.
Because at the end of life, those wishes matter. And you want to give your loved one the funeral they want and deserve. So it’s a good time to tie up any lose ends of what they might want for their funeral or burial. What music they want, what type of headstone they might like (as there are tons of different options, including marble headstones) or any particular flowers they prefer.
Just be there to listen to them: A terminally ill loved one might want to talk about what’s coming next. They might want to express their fears or worries. They might want to talk about their childhood. Whatever they need at any given time, just be there to listen to them. Even if the conversation makes you uncomfortable.
Let them know that they’re not a burden and they are loved: Feeling like a burden is a common feeling among those who are terminally ill or need a lot of care. Which is far from the truth. Feeling like a burden can weigh heavily on your heart, so if you have a loved one who feels that way, do what you can to reassure them they’re not.
Stay organized: I know, I know. The last thing you care about or want to do when you have a loved one receiving end of life care. But in the case of an emergency or if anything were to happen, being organized will help you be as efficient as possible. Keep all medical documents / letters, the will, funeral plans etc in one handy place.
And how can we help ourselves when we’re faced with the end of life care of a loved one?:
Seek additional help if you need it: I understand that going to therapy is probably the last thing anyone wants to do when they have a loved one who’s terminally ill but I’m a huge advocate for therapy and the right therapy and the right therapist can have a hugely positive impact on your mental state.
Talk to friends and family: Talk it out. If you don’t want to or can’t afford a therapist, then seek out other people in your life to talk with. There will be others going through similar thoughts and feelings to you and you might be surprised at how you connect with them when you have a honest conversation about how you’re feeling.
Inform the people who need to know: Just to make your life easier, make sure you tell people who might be expecting something of you. Your boss, your teacher – whoever.
Add in small things you love every day: Even if you have a loved one receiving end of life care, you’re not going to be needed 24/7. There’s going to be plenty of time while they’re asleep or receiving treatment that you have time for yourself. Those are the perfect times to sneak in small activities that you love. A bit of reading, a podcast or drawing.
Prioritize sleep: You need to get your sleep so you’re alert and awake to spend time with your loved one when you can. Don’t skimp out on sleep because your body needs it.
Don’t beat yourself up: This is going to be the prime time to beat yourself up and being overrun with guilt. When we know a loved one is near the end of their life, suddenly we like to remember all the things we did wrong or wish we had done differently. Now is NOT the time for that. You also might feel guilty for doing literally ANYTHING else other than spending time with them or sitting by their bedside. But taking a little time for yourself doesn’t make you a bad person.
Here are some quotes from people who have experience with end of life care:
“I lost my father, my father in law and my grandfather in 3 months. Make memories even in the last few days/hours as these moments you will never forget. Be kind to yourself and those around you. Keep strong and remember the good times” – Mini Me and Luxury
“Watching my dad go through end of life care is the hardest thing I’ve ever done. In the final stages I learned to take every day as it came and I listened to the wonderful team at Marie Curie who helped us in making sure that my dads wishes of being at home, were carried out. But, if I’m honest there are no tips for this moment as no matter how much you think you are prepared for it, you never truly are.” – Kirsty Marie
Related Read: Lights To Remember – Christmas Without A Loved One
“The advice I would give is to remember the person that they were. This might sound strange but with end of live care, the chances are that they no longer look or act the way they used to. However its important to remember that inside they are still the same person – the one who cares about you and made you laugh. Remembering this really helps you to not only accept what is happening but it also makes you realise how important it is to make their remaining time as comfortable as possible. It made me fight for the best care I could get too.” – The Kelly Diane Report
“My top piece of advice is to keep your circle tight when your in the last few days of someone’s life. What I mean by that is rather than racing around telling the world what’s going on, invest that time in the loved one you’re saying goodbye to. The world doesn’t need to know, they will wait for you. Those close to you will be there to support you, lean on them when you need to but don’t worry that you’ve not been present.
Also make sure you take your time to process what is going on, end of life can take hours, days or even weeks. However much you want to be there every moment you can, it’s important that you take time for you. Give yourself as much time as you can, even if it’s just 5 minutes fresh air or time alone. You need it and your loved one needs you to have that time.
When the time comes to say goodbye, don’t feel rushed. Stay as long as you need to. Hospices especially are amazing at giving you and your family time with your loved one after they pass away. Don’t feel weird about sitting with them in those few hours after they pass. It really is the most natural thing in the world to do and really helps in the grief process. Once you leave them for the final time, don’t rush around trying to make arrangements. I did this and I look back now and wish I’d just stopped and allowed myself time to really accept what had happened.
Funeral homes, death certificates, notifying relevant people can wait. Make sure you use the valuable time you have left to discuss your loved ones wishes as well. Having difficult conversations are so hard but when it comes to knowing exactly what they want when the time comes will really be the best way to honor their memory.” – Our Favourite Jar
I know this post was a difficult one but I’d love to hear your own stories, experiences, tips and advice in the comments.
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What a fantastic and much needed post Jenny. Speaking from experience the best thing you can do at a time like that is just be as present as possible. Everything can wait ❤
Thank you 🙂 x
This was really interesting, there’s so much to consider under these circumstances and it’s tough depending on the level of care the person needs. I don’t really have any experience with this, my nan died in January, she’d been living in sheltered accommodation for just over a year but she was told she had to move out and into a home as soon as she got her cancer diagnosis (November) because the level of care needed was going to be escalated very quickly so there were no real decisions we had to make in that process – and it all happened so fast. Making sure you know the wishes of your nearest is so important even if it does make for some difficult conversations x
I’m sorry to hear that Soph but it seems like all the appropriate decisions were made for her xxx
End of life care is such a delicate topic, and you wrote this piece in such an informative and sensitive manner. Thank you for sharing your opinions and that of others in this blog post!
Thank you so much I’m so glad x
This is such an important topic and you’ve written about it so beautifully and sensitively. I don’t think we hear enough about the things that happens before a funeral and I’ve never known much about end of life care myself to be totally honest so this is really useful and I’m sure will be for lots of people xx
Tiffany x http://www.foodandotherloves.co.uk
Thanks so much xxx
This has been so well written and you make really great points in the post. It’s such a difficult time to navigate.
Thank you x
This is such an important thing to discuss. I dread the day something happens to my grandparents as it can be so difficult
Lovely post, we should be able to talk more openly about topics like this. Sadly my Nan needed end of life care quite quickly after a missed cancer diagnosis. It was hard as she wanted to be at home and they wanted her to be moved into a hospice. It was personal in a way as it didn’t feel so clincial but hurt the same. My Grandad died 15 months later and I think they were due to put end of life care in place but he died suddenly. I was also so, I don’t want to say pleased but grateful that they both died at home in their own beds!
Thank you for sharing. And I’m sorry for your losses. But at least you have that small saving grace that they both died where they wanted to.
I used to handle Palliative care and it’s such a difficult thing to get right xx
Oh wow really?
We lost three family members this year. We try to look on the end of life as them going to a happier and better place, but that does not make it any less hard to let them go! Thank you for sharing an important reminder to cherish and make time count.
Oh I’m so sorry to hear that. What a difficult year.
Such an important and difficult topic to write about. I know I found it extremely hard when my Nan went through her end of life care. She kept telling us she would reach her birthday and she did which was amazing, so we had a lovely mini party in her care home and it is such a cherished memory. It really did help knowing her wishes though, even though it was such a hard time and it’s not something you really want to talk about. Thank you for sharing a post on this topic Jenny! xx
Oh that’s so lovely! I’m glad to managed to make those memories with her on her birthday!
Thankfully it’s something I’ve never had to deal with but I imagine it’s so difficult and heartbreaking x
Yes, it is x
I’m so, so sorry for your loss. I used to work at a nursing home and it was tough seeing people pass away often. I can only imagine how much tougher it would be if it were a family member. I’m glad you talked about this as it’s a topic not many talk about. Thank you for sharing your story and I hope you are doing okay. x
I admire you for working in a nursing home. Not everyone could do a job like that!
It was one of the toughest jobs I’ve ever had but I’m thankful for the experiences.
You are very courageous to write about this topic. I have experienced this life experience with family and it’s hard when you already know what the future will be. But I agree that it is important to know the wishes of your love one and seek all resources needed to get through those times.
Thank you. I’m sorry for your loss.
This is such an important topic that honestly isn’t discussed enough. A friend of mine was in hospice care for approximately 3 months before she passed from cancer. I remember feeling so helpless, wishing that there was something that I could do but not knowing where to begin. I wish I had something like this to refer to at a time when my mind was racing, everywhere and nowhere all at the same time!
Oh I’m so sorry. That sounds devastating. She must have been quite young?
Great tips… and essential for those who manage to live long enough to be considered elderly. They definitely deserve the best of care!
They definitely do!
It’s taken me a while to think what to say because this was such a beautifully written and sensitive post. Obviously I would expect nothing less from you, Jenny 🙂 I was away at university when my mother was receiving end of life care and I feel guilt every day that I wasn’t there. She specifically requested no-one tell me because she didn’t want to impact on my finals. In the end, some family friends phoned me and got me down the night before she died. I had no idea she was so ill. While I understand her wishes, I also wish she had allowed me to spend the time with her, it’s time I’ll never be able to have again and it still tears me up all these years later. You’re right, I shouldn’t blame myself, but it’s hard not to. Thank you again for such a wonderful post xxx
Oh gosh I’m so sorry. I can imagine you were so conflicted in how you felt about that. I’m not sure what I’d think because obviously on one hand that’s what she wanted for you but on the other, you didn’t get to spend as much time with her. I can’t imagine how difficult that is to process. But I’m glad you still got to see her at the end regardless. And definitely don’t blame yourself for anything. Thank you for your kind words xxxx
That sounds like such a difficult situation to handle. I can understand why you feel guilt about it but you definitely did nothing wrong. I’m so sorry for your loss – even if it has been a long time. And thank you for your kind words xxxxx
Although I have heard of end of life care, it isn’t something which I knew much about, that was until I read this post! I lost my Grandad last Christmas but it was extremely sudden and unexpected so we didn’t go through the end of life care process. Thanks for sharing, it was eye opening!
Ah yes I imagine not. I’m sorry for your loss xxx
This was a wonderful post and I think with everything going on in the world at the moment, it’s got a lot of us thinking about our own mortality. I completely agree it’s not a topic a lot of people would want to talk but it’s so important. Thank you for shedding some light on a topic that’s rarely talked about! x
Oh for sure. It’s been a very eye opening year xxx
This is a wonderful post. End of life care is an issue that needs to be discussed. My partner worked as a legal advisor for adult social care teams and I became all too aware of it’s importance as he would talk about it very often. I will retweet.
Oh wow that sounds like a difficult and eye opening job xxx
This is a very important topic and one that we don’t talk about enough.
My parents pre-arranged their funerals years ago. At the time, I thought it was a strange thing to do. When my dad died, I realized it’s one of the kindest things you can ever do for your loved ones.
Oh wow, I agree. I think that was great of them to do.
A hard read but very important thing to share for everyone, as really it’s all part of life. Thanks for writing this xx
Thank you xx
Thank you for tackling this sensitive subject, but one that a lot of people have experienced. I’ve had a couple of experiences of it, different situations but equally hard. xx
I’m sorry to hear that xxx
Such a difficult thing to deal with. You have written about this in a really helpful, informative, tactful way. It’s never easy to cope with the loss of someone we love, this information will really help other people.
Thank you very much, I’m so glad xx
This is such a difficult and sensitive subject to talk about and this post is written beautifully Jenny, my Grandad was diagnosed with terminal cancer at the start of 2020 and he died at the end of February and it was so important that as a family, we gave him the best end of life care and that he was made comfortable, he was surrounded by some of my family when he died which comforted us as a family x
Lucy | http://www.lucymary.co.uk
I’m so sorry to hear that Lucy but so glad he got the care he deserved xxx
I think knowing the wishes of others under these circumstances, in advance, is very important & it takes away stress when the time comes. Great, thought-provoking post.
Oh yes, definitely xx
Such an important topic and one that people want to shy away from. You bring up many good points. Caregivers need to be mindful that they look after their own needs as well. It is easy to forget about yourself when you are caring for someone else in such a profound way. In the end, love is the thing that gets everybody through…and being patient with ourselves and one another. Thank you for a great post!
I totally agree. You can’t give the best care to someone else if you’re neglecting yourself.
This is such an important topic and still we don’t speak enough about it. As society, we have got a taboo about death and all things related, and we rarely break it. Thank you for coming forward and speaking about this.
Thank you. It’s such a huge taboo, isn’t it?
You’re right, it’s something that we will all have some experience with one day whether it’s a loved one, friend or ourselves so it’s so important to talk about it (no matter how difficult it can be to do so!). This was such an important post and you covered the topic really sensitively 🙂
Thank you so much. I’m glad you thought so!
I live in India and such things don’t take place here as far as I know..it was tough to read it through but also this is so much important to share and make people aware….read those stories too and it must have been so difficult to go through such phase… I recently lost my aunty and her kids are too young… It was in 2018, we lost her and I still pray for strength and patience for her kids… It’s difficult to lose a parents at a young age. 🙁
You must have some sort of care for terminally ill people in your country? That’s so sad about your auntie and her poor kids. I can’t imagine losing a parent so young.
This is such an important thing to talk about. People aren’t comfortable with death in general, but it’s good to know what to keep in mind and do when a loved one is approaching the end.
All the best, Michelle (michellesclutterbox.com)
They’re really not. I’m not. But I’m challenging myself to think about and talk about these things in the hope that it might encourage others to do the same!
This brought tears to my eyes – thanks for explaining how to manage the stress and grief that comes with having a loved one in End of Life Care!
One of my greatest fears is losing my partner or my child, covid having exacerbated that fear. Lately, I’ve begun to think about what’s going to happen to my parents in their golden years, ad I’m their eldest.
Thank you for the mental preparation and excellent ideas! 🙂
Bianca xx | http://www.missmonro.com
Sorry for the tears! I’m not surprised that COVID has exacerbated those fears. I’m sure it’s the same for a lot of people. This year has been a LOT.
I’m glad that you talked about this and shared your tips. I’m lucky that I haven’t really had to think about end of life care, especially as an adult, but your post is a great one to bookmark if the time comes. I especially liked the tips where you tell people to look after themselves and to let people know. These are things that I wouldn’t really think of initially. Great post! X
As an Elderly Caregiver for over 20 years, I am very familiar with end of life care. It is such an emotional and emotionally draining time. But can also be a blessing to those who get to spend those precious final moments with their loved one.
Thanks for sharing this.
That’s amazing. Thank you for all that you do.
This is such a tough subject and sensitive area! Well done you for sharing this, I really hope that it helps the people that need it. Beautifully written!
Thank you 🙂
Thank you for sharing this post, it is so important that we respect the wishes of our loved ones at the end of their life, with the recent situation it has been taken away from us at the moment which is sad
I do hope that things will change once we are over this time 🙂
Nic | Nic’s Adventures & Bakes
It’s so sad that COVID has taken that away from so many people.
This is a touch subject but such an important one too. You never really know how you will react until you are in the situation yourself but the points you’ve mentioned will hopefully help so many people. Thank you for including me in this post. Having been in this situation a few times, I can say that whilst it doesn’t get easier, the way in which I prioritise definitely has. Its meant I’ve spend more time with the person which has made me have no regrets at the end.
I’m sorry to hear you’ve been through this more than once. And thank you so much for your input in the post xxx
I thought this post was incredibly well written Jenny, especially considering it’s such a sensitive topic to tackle. It reminded me of the end of my nannan’s life which was such a difficult time and my mum did such a good job of taking care of her. I think it’s great that you’re using your platform to raise tricky subjects, good job lady! xx
Thanks so much Chloe that means a lot <3 I'm sorry to hear about your Nan but glad she had love and support there at the end xxx
It is honestly a subject that we don’t talk about enough in my opinion. We all go to funerals but it’s all the bits that come beforehand that we probably need to know and never discuss, should we have to plan for a loved ones x
I totally agree.
Very Nice Collection Jenny. <3 Circumstance can change a person completely … 🙂
It is a difficult subject to talk about but also so important! I haven’t been in the situation myself so had genuinely never thought about this. But I read the post and appreciate even more so now that I am one of the few but lucky people.
Thanks for sharing
I’m sorry to hear you’ve been in this situation x
A tough read but one that is hugely important. Nothing quite prepares you for this journey you’re about to go on. I wish I had been given advice but at the time no one I knew had been through this.
Thank you for including me in this brilliant post, I wish I’d have read it 2 and a half years ago. Really sensitively covered, even if it did bring a tear to my eye (On school photo day as well!!!)
I hope I didn’t ruin any photos! Thank you so much for your input in this post, your quote was better than the post itself. Such an important topic and it’s so hard to read and think about but it’s almost vital that we do! xxx