My feed

to access all these features

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Life-limiting illness

What a week!

10 replies

Katymac · 08/01/2016 21:38

My dad had lung cancer got better, had a brain tumour, got better & now appears to have his brain tumour (or another one) back

At the start of December he was OK, starting to walk with a stick, before Christmas he moved on to a walker, Boxing Day his left side lost strength

Since Monday he has fallen 5 times so the GP is suggesting this is it

We now have a hospital bed & table (awaiting a commode) I've had a curtain pole put up & curtain are up to protect his privacy with a screen as well

The Hospice at home are coming in the morning and the crisis team are ringing midday & in the evening to check what is happening

We are getting an emergency medication pack in case he gets pain for the district nurse

He has his digital radio & by Monday he should have a telly to watch

What else can I do?

OP posts:
Hassled · 08/01/2016 21:43

It sounds like you've done a huge amount. I'm so sorry - do hope he's not in too much discomfort. Is he aware of what's going on?

RogerTheTodgerDodger · 08/01/2016 21:57

Sounds like you're doing everything you can. It's an impossible situation-one I know all too well.
I do hope he's as comfortable as possible. Sending hugs to you OP xx

Katymac · 08/01/2016 22:01

He drifts in & out of awareness

He says he is in no pain

OP posts:
Procrastinatingpeacock · 09/01/2016 15:05

Sorry you are going through this Katymac. Is the intention that your Dad will stay at home from now? My mum died at home last year, we knew it was coming so had plenty of time to plan and it sounds like you have everything covered on the medical/ care side so well done. The only thing I would mention is whether you and your family are happy that you know your Dad's wishes regarding funeral arrangements etc.

I truly believe that being able to prepare for my mum's death and knowing that we were able to fulfil her wishes about her death and funeral have made the grieving process so much easier. I hope that you find comfort in that as well over the coming months.

Katymac · 09/01/2016 20:16

Yep - & we know he'd prefer a cardboard box (however the undertakers insist on a chipboard/hardboard base) & cremation with little ceremony Wink

It is hard, but he keeps us light-hearted

OP posts:
Secretus · 10/01/2016 12:26

Sorry to hear this katymac. My dad died five years ago of a similar illness.
From what you describe be prepared for a rapid deterioration. Is there any chance of a hospice bed? I ask this because the physical difficulty of nursing someone at the end is overwhelming and in a hospice all that is done for you and you can just spend time sitting with him.
I recorded some of dads favourite radio and he listened to it on headphones once he could no longer move, watch tv or pick up a book.

Stuffofawesome · 10/01/2016 12:32

Sorry you are going through this. Gentle massage can be a powerful way to connect and show love. Massaging his hands or feet can be lovely.

ThenLaterWhenItGotDark · 10/01/2016 12:36

Sorry to hear this Katy. Flowers

Make sure that the people who come in and out of the house to look after him don't boss him (and you) around. My Aunt is still v traumatised about my Uncle who died at home, of lung cancer about 4 yrs ago. She says she felt invaded. He was shunted off into a side room and not "allowed" to do anything because the nurses "weren't covered" or "didn't have time". It was horrible.

I know most HCPs in this situation are fantastic, unfortunately my Uncle got a pair of jobsworths. Sad

Katymac · 10/01/2016 13:42

So far the carers have been wonderful, getting him downstairs initially when he had been stuck up there for 3 days

The hospital bed has made things much better & he is downstairs in the dining room between the lounge/Kitchen/conservatory

We will keep him here as long as possible - but will give in to a hospice if necessary - the Hospice at home team seem amazing

The next decision is if he needs 'continuing care' which is NHS or just personal care which he will have to pay for (I think)

But Radio 2 played the Sloop John B this morning and that had me in tears

OP posts:
Katymac · 13/01/2016 18:53

Today I have:
Confirmed details for attendance allowance
Ordered a stand for his 'slave' TV (so he can watch what everyone else is)
Cancelled his internet banking & arranged for some additional automatic transfers
Confirmed that my mum's car insurance is valid after he dies
Cancelled his linkedin
Unsubscribed from several hundred emails Hmm

This week I have also
Arranged a new digi box
Arranged some kit to create the 'save' TV
Sat with him twice while my mum went out

I still have to
get the TV stand on the wall,
plug in the slave TV kit
buy a 6 hole extension lead

his morphine has arrived & my mum has hidden it as he doesn't need it
The district nurses are doing his bed sores

Pops is on good form sharing his blog with all & sundry (poor carers!!) but my mum is getting more & more brittle

OP posts:
Please create an account

To comment on this thread you need to create a Mumsnet account.