Hello I’m Douglas

[Dis1960]

The battle to get home starts again on Monday. The OT+social worker want 4x visits per day of 2 people each time to operate hoist
Bed - commode- chair
Chair-commode- chair
Chair-commode- chair
Chair- commode- bed
So that’s £600 per week before anything else

No palliative care has not been touched upon

[Kayleigh]

Hello Douglas

Sorry to hear about the situation you are in. I hope you are being made as comfortable as possible.

Love and best wishes to you and your wife.
Kayleigh xx

[Gillette]

Hi Chrissie,

You're probably feeling punch drunk with everything that's happened. Perhaps it would be a good idea for you and Doug to talk to each other about what is most important to you both regarding his future care? What things you need or want clarified. Where would be best/easiest for him to be in the short term, for each of you. Things like that. It sounds as though a point has been reached where Doug's and your wishes and preferences need to be shared with the healthcare professionals. I can't see any reason why he doesn't have a referral to the palliative care team.

Please take care of yourself, Chrissie, and remember that we will give you and Doug support - you only need to ask.

I'm sending huge electronic hugs to you both.

[Gillette]

The battle to get home starts again on Monday. The OT+social worker want 4x visits per day of 2 people each time to operate hoist
Bed - commode- chair
Chair-commode- chair
Chair-commode- chair
Chair- commode- bed
So that’s £600 per week before anything else

No palliative care has not been touched upon

Hi Douglas,

Has anyone mentioned Continuing Health Care (CHC) funding? If not, make sure you ask about it. If CHC is awarded you won't have to pay for care.

When I came out of hospital, my care package was similar to what they are proposing for you. I soon found that the second and third visits were not worth having as the timing was always wrong. My partner does everything for me between the getting up and going to bed carers visits, including using the hoist. Carers come only on alternate days because that suited us better than every day. Do you think Chrissie would be able to attend to your personal care on the sort of basis that I have? This is one of the important issues that you and she need to discuss. This is your life and your illness and you have choices about what happens to you (although, obviously, the OT etc will want to ensure you are safe).

[Deb]

Hello Chrissie and Douglas,

I am so very sorry for this impossible situation. You must feel totally overwhelmed by everything.

I really hope you have love and support from family and friends for both of you and that you get home soon Douglas, with the right care.

Thinking about you both and sending hugs,
Love Debbie x

[Terry]

Hello Chrissie and Douglas;

As Dina says, apply for CHC, you stand a very good chance of getting it, CHC is not means tested and is generally backdated.

If people won't help you there, try phoning the hospice or Mnda connect to get things rolling.

Love Terry

[chrissie57]

Thank you for your replies, everyone. I fear part of the problem is that even although Douglas was diagnosed in October I was/am still somewhat in denial, mad as that must seem, and Fridays meeting bought me up against reality��.
I have considered whether I could be involved with the caring but I work full time and I am not sure how it would work. Sadly we are aware from personal experience that, although the costs are breath taking,the service provided often does not merit what you pay.
I believe our Social Worker is applying for CHC

[Gillette]

Hi Chrissie, regarding the quality of care, it is [I]very[I] important to liaise with the care manager at the agency (if you use an agency) so that any problems can be nipped the bud. There is the option of having a personal budget and employing your own carers. In addition, it may well be that Doug qualifies for Continuing Health Care funding.

By the way, there's nothing mad about being in denial but it can be very painful when reality hits.

[Dis1960]

Thanks Dina that meeting was just days after our 28th anniversary so hearing that reaching the 30th anniversary is unlikely was harsh and saying they couldn’t do anything further was brutal

[Ellie]

Hi Doug & Chris,

I can't stop thinking about your situation. I realise your minds are all over the place so I'm sorry for bombarding you with more suggestions but, given that doctors have said they can do no more, maybe now they'll agree to lower the IPAP setting to 10 or 11 and see if that is more comfortable.

It's worth restating that quality of life should generally take priority over quantity for those of us with ALS - though of course it remains a personal and subjective decision - so if any 'treatment' is uncomfortable or can be made more comfortable, we are absolutely allowed to say so. That goes for meds, feeding, NIV, manual handling, cough assists etc. and even paid carers' competencies/relationships - we should be in control of our care, though this may sometimes require finding strength from deep within ourselves to demand what we deserve...

Anyway Doug & Chris, you're foremost in my mind and I wish you strength to get what you need.

Love Ellie.

[Dis1960]

Well after that meeting the doctor was more amenable to tweaking the nippy
So last night the pressure was reduced to 20 and the initial ramp to full pressure was set to 10 minutes CO2 was6.0

Tonight the triggers are being changed

The story now is that the window in which they would do the peg was before the 25% weight loss and the clincher is the CO2 levels variations...

[Dis1960]

Crossing fingers home today

[Gillette]

All fingers crossed for you, Douglas.

[Kayleigh]

All fingers and toes crossed for you Douglas. Love Kayleigh x

[Ellie]

Great news Douglas.

Are your CO2 levels under control then?

Love Ellie.