Sh*t creek - is now in my rear view mirror...!

ginnyknit

Just popping by with a virtual hug. I hope there is some physical help you can get to take the pressure off you a little. 

savingwannabe

Hope you are ok. 

longway2go

Hope you are doing OK, take 1 day at a time. Try to take a little bit of time out for you even if its just to sit with a cup of tea and cake for 10 mins xx

MovingForwards

Hope you're doing ok.

Irenadler

Hello all

Apologies for not popping in more often, but, pretty tired. 

Sadly, not only has Dad got MND confirmed, but, Mum finally has the assessment result of early stage Alzheimer's. Never rains but it pours?

Positives are that, despite refusing referral to dementia services, she has agreed to take the medication which slows down it's progress, so I am taking that. She needs a lot of memory support which is exhausting for Dad and all of us.

Dad's disease is progressing really quickly. He has gone from eating normally, to only being able to swallow puree, to coughing when he drinks water. Next week we see palliative care consultant at LOROS, where they will discuss a feeding tube for him. He is also now more forgetful, not sleeping well, etc etc...

Ups and downs isn't in it.... he will seemingly accept some adaptations, keep one or two, then refuse e.g. walking stick, rise and recline chair, thermal mugs all refused. Hot water dispenser, and toilet bar handles accepted. He has lost a scary amount of weight really quickly, so, we are trying to get him to take supplement drinks with limited success. I just get the feeling he hasn't got the motivation, fight or energy left. Really worrying, as, if he is too thin/ill, they won't deem him fit enough to undergo the minor surgery for a feeding tube.

I guess I should be preparing for the inevitable, but, I just can't yet....

On the money saving side, I am not going anywhere but parents/shopping, so I am not spending apart from the odd stressed out junk food binge... frankly half the time I am too tired to eat, can't unwind to sleep properly, so have actually lost a bit of weight.

Positives are that a sibling has finally come to help, and staying with them part of the week, so, at last I may have a bit of time out from it all. 

Another positive, their bedroom etc all done and decorated, final stuff coming back today. I was so weary of having to calm Mum down, when she started ranting and wailing that stuff isn't coming back, etc. so today we will finally know exactly what is saved and what needs to go. I had to get the specialist cleaning firm to bring it all back, as she didn't believe any of it has been condemned due to smoke damage, or, that opening it at home would cross-contaminate every else. They are putting it in the garage so it can be seen, sorted, binned, or whatever.... the saga is nearly over, just need the final check list of what is condemned and not previously claimed for and that is almost it. Carpet tiles for bathroom and I never have to think about the fire  and its aftermath again. I cannot wait...

MovingForwards

I'm really sorry about your parents Ren, hopefully your dad will start to fight back when things are settled at home.

I'm so pleased to hear sibling has now stepped up, you've done well all this time but couldn't keep it going.

Get yourself some bananas, soya milk, oats and a hand blender. Add 1 or 2 bananas, handful of oats and ³/4 of a pint of soya, blitz it and pop it in the fridge. When you get home drink it. Its healthy, filling and effortless. You've got to keep your own strength up to help others.

Keep checking in occasionally, we're your external support and waiting with open ears and virtual hugs.

savingwannabe

Ren sending hugs, it sounds so stressful. I hope you can rest a bit now that sibling is visiting. Thinking of you. 

Skint_yet_Again

Ren so sorry to hear about your parents. Such a lot of worry for you but I am glad to hear you have more support from sibling. Take care of yourself too. Quick and easy meals are the way forward. Sandwich, tin of soup even microwave meals have their place when you are exhausted and not able to cook. Even a bowl of cereal is better than nothing. Look after yourself x

Irenadler

Thanks all, sorry not to reply individually to you. Dad has had a bad night, forgotten he's almost out of certain meds, and sibling isn't there to help out... needs must, have to get round there and help... TTFN

savingwannabe

Good luck Ren, your poor dad. It is great that you are helping them so much.