End of life symptoms

Work will still be there when your parent is gone. Please take time off and get all your loved ones around before the decline happens. You will know. I lost my dad on Monday and there are no words to describe the pain… the agitation he was showing in the nights before he passed made me know that there was not long left. Lack of appetite and being very sleepy were also part of the signs.

I hope you have pleasant memories together x

Hi there lovely,

ive been through this exact situation with my dad this year. My brother and I shared the care and my dad was totally switched on between sleeps… he ate very little in the last couple of weeks.  You are doing great with the dressings and all the care you are giving your mum. Well done you!! My dad had gangrene in an amputation site and I did the dressings. 
It’s now time that you need to request help from palliative care.. local hospice provided help and I took time off work.. I just couldn’t do it. you need to stop work and be a daughter spending quality time with your mum. Request a palliative care nurse to help with assessing for pain relief. Call Macmillan now! Nobody should be in pain or agitated at the end of life. It’s all preventable but you need to request help because it won’t come to you. This is the care your mum deserves with you and your sister free to be daughters and not taking on the fullest responsibility of care. 
my dad had a syringe driver with analgesia and sedation in it for two or three days before he passed. It got dislodged once and the district nurses came in the night to change it. He also had a tablet dissolving under his tongue which provided immediate pain relief without staying in the system too long. This was for breakthrough pain. I think it was called Abstral don’t quote me and I’m not prescribing here but there are easy ways to nip pain in the bud with immediate effect and that’s one of them that really helped dad. 
my lovely dad passed peacefully with lots of kisses  and hand holding and his favourite Johnny Mathis playing gently in the background. It was actually beautiful although heartbreaking.
Take care of each other lovely girl and I’m sending you loving hugs to all of you xx

Hi there, thank you so much for your kind words & so sorry to hear about your dad but glad he had his family round him and he was at peace ️ 

my mum doesn’t seem to be in a great deal of pain just now she has a fentanyl patch on and shot tech for breakthrough pain! She is eating small bits of breakfast lunch & dinner all puréed because of her swallowing! It’s mostly the lack of energy & weakness in her legs & body that’s now her biggest problem & of course my sister & I are with her 24/7 just now so when she’s comfortable on her couch watching tv she’s just nodding off constantly.

I spoke to my boss & all they can offer me is unpaid leave so I think if I speak to my doctor & get signed off this would help massively as when I’m not at work I’m at my mums & it’s all just mentally & physically draining! But I don’t want my mum suffering because I’m tired! 

palative care nurse just called & ive spoke to her about everything & she has said considering everything she feels my mums still doing well & it’s very hard to put a time scale on things as she is slowly getting weaker but it’s not dramatically it’s (Slowly) so I suppose that’s a possitive! She did offer gwp from cares 4 times per day & over night but it’s just how my mum feels about it as she relays on my sister & I for a lot it’s what she feels comfortable with.

well each day she is here is a blessing so just need to take it day by day! Thank you for your reply..take care xx

That’s great news! Your mum is so lucky to have you both and  yes time off is what you need. 
so you’ve now answered your own question.. the decline is slow and it looks like you are in a good position to call the palliative care team should you need it. 

my dad and I shared the same wicked sense of humour and we had lots of laughs during this time too. I have one special video of him singing down the phone to mum in the care home two weeks before he passed.. she joined in it was lovely!

much peace and love ️ 

Louli

Hi Sky

Sorry to hear that you are struggling. It is so hard.

My mum's prognosis was 3 months, she battled to 7 months. Mum nodded off in the chair more and more until we had to get a hospital bed for her lounge. She refused to be admitted to hospital due to Covid and remained feisty the whole time! My sisters and I cared for her 24/7 in the last few months. She gradually deteriorated and there came a point when we 'knew' that we had to take time off and be with her.

Each one of us moved in to her house for a rotational week each, then when we were calling the nurses multiple times a day we all moved in and slept in the lounge. We took turns during the nights.

You really need to care for YOU too as I know how exhausting it is. We work full time too but if you feel its too much, then maybe see your GP and take time to be with your mum without the extra pressure.

Wishing you well, take care, hope this helps even if only a little bit x

Hi there, so sorry to hear about your mum & it sounds like you & your sisters did an amazing job taking care of her & im sure she would have been so thankful for that! My mums face has all dropped to one side now with the tumour pressing on the nerves & she is having problems with her eye on top of not being able to swallow! We are hoping the steroids given to her by the GP will help with this if not we need to contact the Dietiton & palative care nurse to see what the next step is if she can’t manage any food or shakes at all! She’s so thin all ready & really weak needs help to stand up & be walked to the toilet & be put into bed! It’s so sad to see her like this as she would usually be the one running round after us all! I’m dreading what is infront of us but need to stay strong for my mum & keep doing the best we can for her & im sure the palative care nurses will keep us rite on when they need to bring a bed in & the extra pain relief when it’s needed.

thsnk you so much for your reply & it definitely helps just hearing other people’s experiences on this heartbreaking time. Hope you & your family are at peace & doing as well as can be much love to you all xx

Hi. When my hubby was ill he didn’t want to know the prognosis but I needed to know because I was the same - needed to consider work - so I spoke to the hospice Dr and we had a private chat. Hubby never knew but it did mean I went back to work for a short time. If you have to fo on the sick you may also be able to get carers allowance. But having said that I think you need to get help in. I tried to do it all myself and only in Daves  last few days did I get carers in. In a way it was a blessing that the end came quickly for Dave - he had been sleeping more for a few weeks before but his appetite never went. The night before he passed he had a full chines take away. You need to take care of you too and if you have a local hospice team they will help you out too. Out hospice at home team we’re absolutely amazing. 
it’s hard when you family overseas. My dad lives in France so he came over as restrictions were lifted so he got to say his goodbyes (Dave only  lasted three weeks after that )

Please try to get some help - It’s too hard to do on your own x x 

Hi there, thank you so much for your reply & so sorry to hear about your husband it’s such a cruel world !

my mums woke up today quite breathless & really chesty as she is too weak to couch her flem up ! I e phoned the district nurces! She’s stifling to get her steroids down, wish I had all the answers but really just taking it day by day! 

thank you again xx

This is aweful to see your mum like this… perhaps anything to make your mum as comfortable as possible as breathlessness can make her quite anxious and you of course. 
I know when my dad was no longer able to swallow medication or food to sustain himself they started syringe driver to be sure pain killers and sedative got into his system.

you are in my thoughts lovely xx

I was just going to suggest the same. That’s what they did for Dave too - the syringe driver - and it helped massively. The hospice at home team sorted it. Maybe something to ask about.  

You’re doing amazing Sky1. No one who hasn’t been through this understands how hard it is. We do! Here if you need to talk x