Progress is...

rtandon27

Sobering...

Fiddling with the budgets - being terminally ill is very expensive - even the attendance allowance OH will get starting next week will only just cover taxis to & from hospital for tests and appointments, and what's left supplements special food & vitamin/mineral concoctions.

Just set up a category for OH's funeral - didn't think I'd have to that for another 10 years - I'll move money from our emergency fund and replace it in time.

beanielou

Any other help McMillian can offer/help you with? 

Cherryfudge

It must all be next to impossible. You are amazing for keeping your head and dealing with finances on top of everything else.

rtandon27

@beanielou - Macmillan nurses have been amazing! 

We've had two calls this week - one to help with nutrition and another did a whole bunch of admin that I thought I'd have to spend hours on - she did in 30 minutes!  OH has his own blue badge coming, she set up the attendance allowance & also gave us lots of options for getting to the hospital on days OH is not allowed to drive back.  As he's not going to be able to cook & clean easily, there is even a service locally to help us out with that stuff for which I am very greatful as last month our food bill went through the roof with all the ordering I had to do!

Unfortunately all that transportation stuff is fine for things that are planned in advance as they require a week's notice, but today's appts & Monday's are short notice so we have to suck it up and pay taxi's out of pocket - I'm keeping the receipts though as I might be able to retroactively claim back from my health insurance.

greenbee

As well as MacMillan, you might want to look into the availability of Marie Curie nurses and home hospice services locally so you know what your options will be later on and can have a plan.

rtandon27

@greenbee - thank-you for the reminder - I've not looked into Marie Curie yet.

Part of double hockey sticks week was a visit from the local palliative care doctor - It was an amazing and gentle visit with space for us just to be us.  We are very lucky that she is affiliated with our local hospice which is in the top 10% of our county and ranks as outstanding!  We've already been called by the 'daycare' team to ensure they meet OH while he is still mobile and self-determining.  We happened to be out of the house for a medical procedure, but I did giggle to hear - don't worry - I will be calling you back!

greenbee

It sounds as if you’re doing all the right things. Planning now can save a lot of stress later. 

When my dad died, he had planned his funeral service (we did deviate from his plans somewhat in the end, but he wasn’t around to know - the important thing for him was that we’d said we’d do it, and he also felt it would take pressure off us), and he and I had been through finances so I knew what was what. However, his pension provider was very quick to stop paying his pension but took weeks to start paying my mum’s widows’ pension (and even longer to pay the month they owed of my dad’s pension, as it’s paid in arrears). As a result I had to pay for the funeral and support her financially until I could claim the funeral costs from the estate and she had an income. If I hadn’t been able to do that, I’m not sure what would have happened.

Watty1

Oh goodness RT this is so hard.  Sending love

rtandon27

@greenbee - thank-you for sharing the story around your Dad - it's so important to talk about death as well as life isn't it?  I'm so thankful that I discovered the MSE way of life shortly after moving to the UK, I've learned so many wise ways of being from this forum!

@Watty1 - the emotion comes in waves!  A complete stranger offered me a huge kindness yestrday that reflected his cultural background & acknowledged where OH & I are in life atm.  I was so moved & touched by the unexpected gesture that I had a good 20 minute cry over it (in private later).  There is kindness in this world and it shows up in the most unexpected ways!

ETA - @Cherryfudge - so sorry, I didn't see your comment! - It's definately hard to manage, but I don't hink impossible - I do have to pick and choose what to pay attention to, so start with the absolute priorities, then go onto the good habits - everything else has gone to pot - LOL - we had friends from the church pop in unexpectedly just as I arrived home from almost 13 hours out of the house from work & a long commute - the house was an utter tip & all I wanted was to have dinner and a good long sleep - I figured, oh well, no notice = no excuses, so I told them upfront how we were only just coping - they did what they had come to do which was 'pray over us' as they are a touch evangelical - it was lovely and heartwarming but I can tell you I did not offer them tea/coffee and had zero snacks in the house as well so was the worst host!  I'm sure that will get round the church pdq but oh well, it's not like anyone is living our experience so they can judge as they see fit!

rtandon27

Weekend list - normal routines as usual!

important tasks...
 ❗ do bus pass application
 ❗ clean up of spare laptop sitting at the office, I've not cleaned it up yet!
🔱 never ending paperwork filing
✅ sign up for new online banking account as c/c was transferred to new bank
🔆 my savings need juggling

routine tasks...
🔆 YNAB juggling
🔆 across the pond banking - remember to use the correct vpn!
🔱 water bill - now not due on Oct 1st but Oct 17th! - expense moved to October! - money stays in my account!
🔆 grocery order - consult with OH
🔆 meal plan - focus on what we have in house!
🔱 weekly digital planner
🔆 supplements
🔆 Weekly surveys & contests
🔱 laundry - first load done and STILL drying with the dehu - second load ready to go once first is almost ry

non-routine tasks...
✅ vacuumed living area
✅ breakfast - bagel and egg mayo for me, liquid shake for OH
🔆 pack OH's bag using list - he has another hospital appointment on Monday and Thursday
🔱 sort out formal wear for occaisions!
🔆 still on the hunt for ballerina wedges that fit for everyday use!
🔆 Delay Repay
🔆 EHIC card - is old one valid or do up application
🔱 BFF & I chatted &forgot to discuss money! - guess that's why we are BFF's!

medical follow-ups...
 ❗ contact medical insurance to make sure they cover Thursday's treatment - specialist has organized this
 ❗ my dermatologist referral - have docs names - now need to book appt
🔆 follow-up on OT recommendations for work assessment
🔆 follow-up on private eye specialist for myself

epic list of garden things...
🔆 harvest last of the chilis - the are gorgeously ripe
🔱 need to transplant two chili plants & bring indoors
✅ dried chilis have been de-stringed and are now looking gorgeous on the shelf in a kilner
🔆 pick and process apples
🔱 once lavender is dry from rain make lavender bundles for drying
⏳ start getting quotes for new felt for flat roof & summer house & shed (needs doing in autumn) - on hold
⏳ 4 bags cotswold stone - trip to W!ckes postponed - on hold
⏳ transplant remaining baby trees into their new pots - on hold 
⏳ trim down and rehome butterfly bush - on hold
⏳ new trellis needs to go up for the climbing rose in the front - OH has acquired the hardware! - on hold
⏳ finish taming climbing jasmine & add more supports for it to grown on - on hold

social calendar...
💝 Oct - thanksgiving - simple meal today as OH might not be up to eating
💝 Nov 1 - family occaision & party in Melton Mowbray - hopefully OH will be well enough to go - it's his family
💝 Nov 11 - another occasion this time closer to home but more formal - friends coming in from London as well - we can't actually miss this one so life will be planned to accomodate!
⏳ korean street food - will have to rebook this one, perhaps when my good mate is back from Thailand

Meal Plan... (in the works)

Sunday - NOT Roast - OH not well - I had noodles & he had a shake - funnily he could wolf down a mini pecan trecle tart (they won't keep)
🍆 🧀 Monday - Veggie Day - Eggplant Parma from the freezer

🐟 🦐 🥬 Tuesday - Fish Day - Sea Bass & prawns & green veg & noodles
🍗 🥗 🍠 Wednesday - Chicken Day - Herb Chicken from the freezer with salad and sweet potatoes
🍖🥔🥕Thursday - Meat Day - slow cooker Beef & Potatoes & Carrots with Georgian tomato sauce
🌭🍟 Friday - Fakeaway - Hot Dogs & Waffle Fries
Saturday - Easy Peasy - ???
🦃🥧🎃 Sunday - Roast - Postponed Thanksgiving Meal - Turkey & all the sides (Sunday Roast Canuck Style)
🍝 🍄 🥓 Monday - Slow Cooked Gnocchi with mushroom sauce & bacon lardons