Practical Advice for dealing with someone that is Terminally Ill

So as I approach 1 year since my mum died, I thought I would share with you some quite practical information on things to consider if you are caring or coping with someone that is terminally ill.

Whilst this is quite a hard post to write, I know that when my mum was in the final stages of her life,  I searched the internet for advice and things to help me cope. I hope that some of the things I share here, do the same for you. Firstly a disclaimer. My mum had cancer and so some of the advice I share below relates directly to that, but I hope some of the advice I can offer will help, no matter the circumstances. Here goes….

Getting the News

My mum got the news that there was no more that the hospital could do about 1 month before she passed away. It was devastating as you can imagine and honestly the most heartbreaking thing that I have ever had to deal with. But people expect lots of mushiness like “tell your relative you love them” and then deal with things “before it’s too late” type stuff. But the reality can be very different.

Don’t get me wrong, it’s good advice to say stuff you feel needs saying, because if you’ve had a terminal diagnosis, then you ARE going to run out of time. But the reality of someone being seriously ill and then dying is that it’s VERY stressful and stress causes arguments and irritability like you can’t imagine. No-one sleeps, everyone suffers and for me the grieving process started the minute the doctors sent mum to “be with your family”. It was an horrific time.

There is no magic solution to this and you somehow have to get through it. I just wish I had put myself on a waiting list to see a grief counsellor there and then – when I went after mum died, I was told there was a 6 month waiting list!

My only advice at this stage, is to try and make sure you rest when and where you can.  If your loved one is in hospital – give yourself a day off visiting. You will feel rested and better able to deal when you go back. You will feel guilty, but honestly – as a carer, you’ve also got to look after yourself to do a good job.

I have first hand experience of how much sleep during periods of stress is VERY necessary. In March 2015 about 5 weeks before mum died, I was on my way to work after yet another night of broken sleep and weird dreams. I drove towards a roundabout that was part of my normal morning commute and with the benefit of hindsight, I just wasn’t concentrating. I was totally exhausted and had too many worries circling around my brain.

A distracted me approached a roundabout, (thankfully going very slowly in traffic) and crashed my car right into the car in front of me. The poor girl I crashed into was about 20 and looked petrified – calling all her family whilst trying not to have a full on meltdown of her own. Thankfully there was almost no damage to her car and my car seemed to have taken the full force. It was the thing that pushed my nervous exhaustion over the edge and I took the next 2 weeks off work to spend some time with mum – and to get some sleep.

Getting Help
Once you know you are facing a terminal illness, one huge thing you need to do is get help. Plug yourself and your loved one into ALL the services and be cheeky, ask questions – if you don’t ask then you don’t get. However, I have to say that this isn’t easy at first, as my experience was that none of the services talk to each other and you 100% have to become a project co-ordinator and facilitator.  Your “project” being the terminally ill person of course. In no particular order, here are some things that we took advantage of:

Blue Badge –  (Click this link to the St Helens Council Info)
A blue parking badge is something that you can apply for from your local council. When you have got your terminally ill person with you, it will enable you to park in otherwise restricted places, e.g. double yellow lines. It does offer free parking in some car-parks but not all and it was much easier to apply for and quicker to receive get than I thought it might be.

All we had to do was fill in and online form with my local council and we received the badge within 2 weeks of application. This was really valuable for mum & dad because mum couldn’t walk for the last 4 months of her life and so getting to simple things like optician appointments or blood tests could be tricky if there wan’t any parking nearby.

As I mentioned above, mum couldn’t walk more than about 6 feet in the last 4 months of her life as on top of having cancer, she fell and broke her hip in hospital! The break was pinned with surgery, but she was so weak, she didn’t have the strength to make a full recovery. Our solution was to hire a wheelchair and we found out that there were a few local charities that do this relatively inexpensively.

The best one we found was The Red Cross here:

Practical Aids
My mum’s weakness meant that she needed a few aids to help with her comfort and personal needs. This included a hospital bed in the living room, a special air mattress to help with bed sores, oxygen, a walking frame and a commode. These were all procured with the help of social services and the district nurses/GP.

Having a Shower
As I mentioned, my mum was very weak in the last few months and she certainly couldn’t make it up the stairs to the bathroom. The various services organised a commode and care workers to come and give her a wash, but she really missed having a shower. No-one in our family had any ground floor facilities and so in the end, we paid for a room for a couple of hours at a local hotel. This worked out really well as the hotel had a lift and was wheelchair friendly. We also booked an accessible room which meant that it was slightly larger to accommodate the chair and most importantly, it had a seat in the shower. This meant that my sister and I got to spent a couple of hours with her and she could get her whole body under the shower – such a cathartic thing.

Social Services
So, the dreaded social services, where to begin…. OK well even though it’s a minefield, it’s worth delving in, even if claiming benefits feels really alien to you. In essence the benefits system is there to help people when they are in need and offer financial assistance when that is most needed.

One benefit I think is useful for people who are carers is Attendance Allowance. This is a payment that you can get if you are caring for someone at home and looking after most of their basic needs. It’s pretty well explained here and here

Your local GP and Health Centre
I really can’t stress enough how useful your local GP and District Nurse can be at sorting and organising things for you. Now don’t get me wrong, you CONSTANTLY have to remind and ring and push and nudge, but if you are tenacious enough, then they will do it!

They can nudge the maze of social services, they can put you in touch with your local hospice and specialist nurses and a whole host of services that you never even knew existed. Here’s a quick guide, gleaned from experience.

Macmillan Nurses – specialist cancer nurses that help you cope with Cancer at home. Ours was based at our local hospice and was part funded by the NHS. We were put in touch with him via our GP and he came out to the house. He provided real practical advice and access to services and was also and importantly – lovely. However, the downside to this, is that he was MASSIVELY busy. So whilst he did have an office we could call, the phone was rarely answered. We left messages that were returned, but not always by the same person we had previously spoken to. Lots of constantly explaining our issues from scratch.

Marie Curie Nurses – again, specialist nurses, but the difference is that these altruistic people will sit with your loved one through the night, so that you and your loved one can all either get some sleep or have a few relaxing hours. We didn’t manage to make use of this service as we asked too late and mum died before anyone was free. Again, available via your GP or district nurse.

Hospice Care
Oh so talking about Hospices can often be the most stressful thing of all when dealing with someone who is gravely ill. I think for most people, when the subject is brought up, they think of it as a line in the sand. It’s like someone is waving a flag and declaring “It’s official, you’re dying”. But we sort of already knew that though, didn’t we….

Again, mum didn’t managed to get to our local hospice, but it was offered as soon as we got the GP and District nurses involved. Did you know you don’t have to stay overnight at a hospice, as most have day services that offer accessible showering and bathing facilities, pain management, clinical appointments and holistic services like Reiki and massage. If you can encourage your person to go, then do it. Don’t be afraid of it – I mean can I be frank…. they might get a chance to speak honestly about how they are feeling when they get there, without worrying that they may upset you. Also, YOU might get a couple of hours to yourself to rest/clean up/watch EastEnders or just not think about your the fact your loved one is dying. A relief all round if you ask me.

End of Life Medication
Another very scary thing when you are nearing the end is the introduction of End of Life Medication, i.e. syringe drivers. These are medications to help someone who is within a few days or weeks of the end of their life. They are  usually prescribed by your GP and administered by the nurses that will be inevitably be visiting your home or hospice. As you all know, most people take their meds orally, washing pills down with a glass of water, but as people become more and more unwell, they may stop eating and drinking. Therefore all medicine is given via a drip to stop stress and to be as discreet as possible.

Also at this point, some medicines that your person is taking, for example to try and stop their condition getting any worse or even cure it, will also be stopped. To be very clear, this is only done when it is thought by all the clinicians involved that there is no longer any hope of survival. The end of life meds will switch to ones that relieve symptoms, discomfort and pain only.

You won’t have to make the decision when to switch, the medical people will do it for you.

What happens when some dies – in reality. 

It’s really not like you see on the TV where there is a last poignant speech followed by a serene last breath and I think if you look at the Cancer Research website here  it does explain very accurately what to expect.

My experience was something like this. In the couple of weeks before mum died, she told my Auntie she could feel herself getting weaker. In the week of her death, whilst struggling to move from the chair to the bed, she looked at me and told me she just wanted things over with. I told her it was OK and I understood. She had lost over half her body weight in a 12 months period and even just sitting up in bed was an effort.

In the last 48 hours of her life, she had become incontinent, which was not only distressing for her (she was 68 and of completely sound mind) but after reading the @CR_UK Website, it was real signal for me that we were close to the end.

On the night she died, she had had some morphine for pain and was already quite sleepy. She told me she was tired and fell asleep very quickly at about 10:00pm. Over the next few hours her breathing became slower and heavier, which I didn’t think anything of as her lungs were pretty battered. I dozed on and off but was awake at 2:00am. She was still breathing but it did seem to be very slow with large gaps between each breath. At about 2:15am I noticed that I couldn’t see her chest moving and so I checked to see if I could find a pulse. I couldn’t. She had gone.

There was no last gasp.. her breathing just slowed down and then stopped. Her heart just stopped beating, slowly and quietly. She was in her own house and that was exactly what she wanted.

So there you have it – just some experience and a little knowledge that I hope helps you when you are searching for it. You can leave comments and ask questions and I will answer if I can. This isn’t easy for anyone – don’t be afraid to say you aren’t ok. You don’t get any prizes for doing it all yourself. Ask for help – you’ll be surprised at how willing people are to be kind and more than happy to hold your hand.

G x

p.s. this is my mum.. miss her every day.

Mum & I at my sister’s hen do

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