Creation of a downstairs bed area for my terminally ill Dad

[Katymac]

He has a brain tumour (post Lung Cancer) & will need to be in bed permanently fairly soon

My mum plans to put a spare single bed in the dining area of the through lounge/dining/kitchen

I think this is less than ideal as he will be in the thoroughfare between all rooms (conservatory/lounge/kitchen)

Now I totally understand her need to have him downstairs & 'part of the family' not 'trapped upstairs to die'

But I'm not sure this is the best way to ensure it happens - he will have no privacy, no quiet the area can be seen from the road in 2 directions

I don't have a solution but think that is a bad one

That's hard for all of you. I'm sorry for you. I'd create more than one area I think, so your dad can also choose where he wants to be. Would the conservatory also work? You know the layout best.

that's an idea - at least initially

I'm not sure of our ability to move him between spaces towards the end

Is he being supported by a hospice or a cancer care nurse? If so, why not ask the staff to help? They will have visited patients in this situation and know what snags you're likely to come across and what works best.

Is your dad able to express an opinion? What does he think?

I think he may appreciate his own bedroom when he becomes very ill. My DF passed away at home and it was very peaceful upstairs. There was always someone sitting in with him in the last couple of weeks we would sit in the living room and someone always wanted to go up and sit with dad. Sorry about your dad.

not yet - we will get the diagnosis formally on Friday and access Macmillan then

My Brother is fairly well read about these things and is hopeful that as it's a metastasis it shouldn't be too drawn out- in the last 2 weeks he has started losing his balance to one side so he lurches turns around and carries on rather like making progress through walking little loops

He is concerned about privacy & quiet but wants to placate my mum

He is refusing to consider a hospice as he worries my mum won't cope

I'm sorry to hear this, my DF had a hospital bed delivered and we set up the spare room for him upstairs in his final week. There was always someone with him and Marie Curie nurse stayed all night so my mum could sleep.

It was quiet, peaceful and dignified for Dad at the end as he lost his faculties..

Good luck in finding the right solution for your family. Our community nurses helped sort the equipment maybe speak to them.

I'm so sorry you're having to do this.

It was a long time ago but when we were nursing my dad we put a bed in the dining room of an l-shaped lounge, it was a nice space because it was off the living room and also had windows to the garden, and was at the rear of the house.

Is there any means of moving the living space around a bit?

conservatory with blinds and fan/air-con for temperature control sounds best option

I'm in open access 'bedroom' due to disability and it's not good

He is refusing to consider a hospice as he worries my mum won't cope

A hospice can provide advice and care at home. They are experts in how to make this time easier and your mum is likely to cope better with their support. Maybe you could talk to them and see what they can offer.

www.macmillan.org.uk/information-and-support/coping/getting-support/macmillan-nurses/index.html?gclid=CN-32fDIycYCFUjHtAodZ4YDmw

friends have had great support from this organisation

He rang his macmmillian nurse twice in March/April but she hasn't been back in touch yet - we've spoken about 6 timessince diagnosis last May & seen someone twice

I won't be holding my breath waiting for support from them

:(
what a let-down
have social services been any help?

www.carersuk.org/help-and-advice/practical-support/getting-care-and-support

any good?

Thanks Julia - I think when he was first diagnosed (May 14) it was thought he would go fairly quickly so SS weren't involved

Now they think he will go fairly quickly again so I'm not sure what is happening

any progress?
if not, go via gp
xx

Thanks Mumslife- sorry for your loss

Umm progress - yes sort of; 2 weeks after a phone call saying it was growing and they could do nothing he was called into hospital for his next treatment plan & they hope to cure it

I'm a bit about it all and tbh I am struggling with the up & down of it all

But 5 sessions of targeted radiotherapy have been booked & steroids started and apparently it hasn't grown at all

I do think their communication systems need work

I have my fingers crossed for you, Katymac.

We are in the process of gutting the study at my Father's house to make room for a hospital bed. He has bladder cancer which seems to have spread to his bones, causing some fractures. He can get about carefully with a frame and is desperate to go home but he's waiting for the paperwork to go through for a bed to be delivered. Upstairs he already has a positionable bed, but they need an air bed for him to relieve pressure sores that he has.

It's making for a frustrating time for him. He went in very unwell from the medication in his system and an infection, but that is sorted. He's mentally ready to go home, but they won't release him until the bed is there.

Thanks whenMarniewasthere tbh the radio therapy made him so ill last time I'd rather they didn't but he went in swearing he wouldn't be treated & came out with a plan so......

How frustrating for you all about paperwork/beds!!

Hi. I'm so sorry to hear that your dad is in this situation.

I am a Community Carer and would agree with your concerns about having his bed in an open plan space.

Sometimes, it's unavoidable & people do cope but if there is a conservatory large enough to accommodate the hospital bed, then I would definitely use that.

To try to put it delicately, bed care will involve your dad being given strip washes in bed, clothing changed in/on the bed and very often (if we are talking about the very end of life), changing of incontinence pads & cleaning him up in regards to that. Obviously, there is a certain smell attached to that - which is not really best placed in the kitchen or even lounge area. Your dad could be rather embarrassed about being the cause of that (I know my dad, who also received bed care with terminal cancer at home, was).

A separate room, with a closable door - even if it's only closed whilst the carers are working - and curtains or blinds would be hugely preferable for maintaining your dad's dignity and comfort. Also, the bed cannot be flat against the wall, as Carers will need to be able to access both sides to give bed care (for rolling, if he is unable to stand mainly but also because H&S rules now state that we cannot bend right across a bed - and actually it's probably not very nice for the person in the bed for that to happen anyway).

Lastly, there will be 'stuff' for your dad that needs to be kept close to hand. A bowl, flannels, towels for his strip wash (once unable to transfer to a bathroom), packets of pads if needed for incontinence at any point (usually delivered monthly in boxes), it would also be useful to have somewhere to keep a few clean clothes & bed sheets handy so that the carers can change him without having to be constantly asking your mum or other family members for things. Also any medical equipment he may need at any point. All of which, makes being in a separate room - where possible - much preferable.

Wishing you and your dad all the best .

Thanks slmb - that is all really useful information

Actually none of the areas we have downstairs are suitable I will print it out for him and my mum, so they know

I feel once the stairs are impossible he will either have to stay upstairs in the main bedroom with a different bed or be in a hospice - their house just isn't suitable

So sorry about your dad. We were in exactly this situation last year. And my dad dies from the tumour. He wanted to be downstairs - in the dining room, exactly as your situation - so that he always had people around him. When he went we were all there. This overrode the practical considerations. For him, it was very much his choice and what everyone else wanted to. We got to see as much of him as possible and he died surrounded by his family.

I hope your dad's outcome is better and he is as comfortable as can be

Another way people sometimes make it work is by using one end of the lounge as a makeshift bedroom with relatives/visitors either just stepping out of the room while personal care is being given or by using screens or even a curtain (if you know someone to rig one up) for some privacy.

A lot does depend on the layout of the house, as to where is the most suitable place. Would the conservatory not be OK? We visit two people who have their hospital beds in their conservatories . Conservatories do vary in size, construction etc. etc. though I'm sure.

If your dad & mum both really want him to be at home then it should be possible, one way or another.

Best of luck .

Have you had any support from the local community nurse team? If you are in the U.K you would be eligible to a hospital bed and air mattress which will make caring for your dad at home much easier. The air mattress will reduce the chances of any pressure sores.

So sorry you are going through this.

I am a community nurse and we support lots of people like your dad to who wish to die at home.

Agree that a separate room would be best if possible.