Let’s Talk About End of Life Care

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.