Looking for the silver lining

*Robin*

Sun_Addict wrote: »

Decided to kill two birds with one stone re running and dog walking and ran with the dog round the block. On the way back I saw a bloke staggering about looked like a drunk in front of me so slowed down a bit to let him get ahead of me. Then he staggered across the road nearly getting run over. Imagine my horror when I got closer and realised it was Mr SA!!!! He had followed me. He must've got dressed quick because I had only been out 10 minutes. The annoying thing is when we're going out in the morning it takes ages to get him ready. I had left him sitting in front of the TV in his dressing gown. He had also left the door unlocked! He claims he was worried about me but I really think he thought I was on a secret assignation. Told him I was very cross with him for doing this but he didn't really understand. It's like having a child to look after. Can really see why he needs a carer. The carer was initially told he'd be needed for 6-9 weeks but I can't see he's going to improve that quickly and the carer thinks the same.

Fed up - especially as under normal circumstances we would be in Lanzarote now

((((Hugs)))) Sun.A reading your post made my blood run cold.. Thank goodness the car missed MrSA and you were in time to rescue him!
Objectively, this is one of those dilemmas which requires lateral thinking. Ok you can try to avoid leaving MrSA alone, but it's worth thinking up some strategies just in case - the last thing we want is for you to feel imprisoned by the caring role which fate has imposed on you.
State help is pretty good in the UK, but all of us can cite instances where it falls short of [STRIKE]the ideal[/STRIKE] what is actually needed. When that happens, there is a choice; accept the limitations [and suffer] or find our own solutions.

So. MrSA's memory has been affected. Building new neural pathways to bypass the damaged area of his brain in the long-term, and practical aides-de-memoir immediately would be helpful.
Ideas (taken from wife of mate who suffered a BI years ago):
1. She gave him a basic mobile with her number on speed dial. At first this was on a long strap round his neck, 'phone in breast pocket (stopped him losing it). He tended to panic even if she left him to go to the loo; said it was common for him to call within a minute of her leaving the room. A pain, but better that she could reassure him than have him following her to the toilet or wandering outside to look for her..
2. She got professional help training their dog to stick with him like glue, on her command (- every time she left his side). Also to bark when she called the dog's name. She said being able to yell for the dog avoided a police search on several occasions (guess what happened just before she decided to get their dog trained? ..Helicopter search and news headlines - happy ending thank goodness ).
Today a smartphone with GPS tracker might be an easier alternative.
3. She fixed a whiteboard on the inside of the front door. If she had to nip out while they were alone in the house, she would write where she had gone on the board, the time she would return, and that he could call her if he was worried (useful on occasions when the reason for going out was dog-walking).

Long term, she decided to limit daily tv-watching and instead they spent time together doing all kinds of problem-solving games; building lego and airfix kits, board games, crosswords and soduku (they introduced me to the latter ). After about three years he had regained his childhood love of chess and was ready to rebuild a bike engine that had been in boxes since before his accident.
She also noticed that he was at his best first thing (unless he'd had seizures overnight). So she made much of breakfast, when they had an hour talking about events in the recent past - he had great trouble remembering day-to-day without reminders - and plans for the coming day (written up on another whiteboard during their conversation). This would include doing his physio exercises and walking the dog together - she was lucky because they own their own business, so she had the freedom to vary her working hours, or work from home when he was 'wobbly'.

Gawd. Sorry Sun.A, am guilty of rambling on, again. Still, hope these recollections of my friends' experiences in a similar situation might be useful to you. Maybe you can adapt some of her ideas, or something better will occur to you?

ps. Storms already hitting Iberia today - sky here is black only about ten miles to the North - please stop regretting Lanzarote, right now it's not a fun location for sun addicts, (thermal undies wouldn't be out of place, though! ).

beanielou

Great ideas from *Robin*.

Sun_Addict

Thank you for all your great ideas and Robin as always you've provided some much appreciated advice. The white board idea was mentioned at the hospital and I must admit what with the busy time lately it had clean gone out of my head until now. It's like having a toddler to look after again - thought I'd done my time on that one!

Anyway after having a fairly sleepless night Thursday, feeling very sorry for myself, shedding a few tears and having a grumpy/depressed Friday at work, have decided I need to pull myself together and just get on with it. Mr SA was quite well behaved last night thankfully but then the torrential rain put a stop to any dog walking ideas. (Rolls sleeves up and gets on with it!)

So - weighed myself this morning and I need to lose 7.5 pounds to get back to my goal weight. Going to do this by eating less and moving more. Might dig out my old Weight Watchers books and keep a food diary. Have a daily steps app and have pledged to do at least 16000 a day. Walked to work yesterday and what with the general walking about to shops etc had done over 16000 by the time I got home. Also plan to do 20 minutes exercise after work - toning. Weekends might be a bit trickier as limited to how far I can go with Mr SA and the weather is dire so far today - but have a treadmill, cross trainer and exercise bike so no excuses.

Looked at spending credit card balance yesterday and it's scarily almost £500!!!!! Usually I clear it off every week but lost the plot a bit over Christmas, bunging everything on it and generally treating Mr SA. This will have to be paid off at the end of January so debt busting may have to go on hold until this card is cleared. Belts are to be tightened from now on!

Checked bank account and am now sorted and know where I am with finances. Form re possible paying for carer has been posted and form for free prescriptions for Mr SA has been handed in to doctors surgery. You get free prescriptions for 5 years when you have cancer.

All I have to do now is ring Virgin and haggle with them - there are a lot of great offers out there and if they can't do anything for me then I'll move. Also need to sort out gas/electric switch.

Thanks for "listening" to me. Thank goodness I have this diary to record my thoughts.

*Robin*

Sorry for rambling yesterday, Sun.A.

Just a thought re prescription charges: If you keep receipts for scripts you've paid for, you should be able to get the money back once MrSA's exemption card arrives (MrR's was backdated to time of cancer diagnosis - which apparently is usual procedure).

please-let-me-be-lucky

I don't think you rambled Robin, you came to SA's rescue as you did mine many times, sainthood remains intact .

SA you are more than entitled to feel sorry for yourself and be grumpy/depressed, but please keep sharing all that with us on your diary. The hardest part of all this is feeling alone while going through it and hopefully we can help with that.

I hope your weekend goes well Xx

Mint1955

Please keep a daily diary of all incidents, daily routines which mean you have to be there or carer does etc. even simple things maybe like tying his shoes or reminding meds.
also diary his moods, capabilities etc etc you will need it.
You are doing great xxxxx

Sun_Addict

Mint it would be easier to keep a diary of what he can do - he can do very little for himself! He thinks he can then proves he can't. But seriously I will keep a diary, although hide it from him as his current beef is everyone is trying to prove he's useless. Very helpfully the hospital gave us a folder listing all the things he can't do - it is meant to be information for the carer but might come in handy in support of the PIP claim.

This lunchtime he wanted to take dog on park across the road despite my protests that it would be too muddy/slippy. He had been feeling very tired all morning and thought it would freshen him up. Yes you've guessed it - within 2 minutes of being on the park he had fallen over. He managed to get back up as luckily he fell by a very low wall which he pulled himself up with. He also put into practice the way the hospital physio showed him to get himself back up after a fall. So by the time we'd thrown the ball a few times for the dog both he and the dog returned home covered in mud! Had to put dog straight in bath.

He seems more tired than he has been lately today and is getting confused again. Hopefully this will pass. Will be glad when he's had the MRI scan a week on Tuesday - just need to put my mind at rest.

And Robin you don't ramble you give good advice backed up with experience Re the prescription - the chemist didn't make us pay, I just had to sign the back. I told him he had cancer and had filled in a form for his doctor to sign.

Sun_Addict

Today has been a quiet day with Mr SA. He has been very cold and tired. We only took the dog to the park across the road for a short time and he was worn out. He's sleeping at the moment.

Managed to get on the treadmill this morning for 20 minutes. Not done many steps this weekend but as I can't go far because of Mr SA I expected this to be the case.

Switched energy supplier via Top Cashback and uswitch so now going back to Scottish Power who I wish I'd stayed with last year. Tried to haggle with Virgin - bloke I spoke to was very unhelpful he offered to downgrade our package for just £10 less per month. When I asked if that was all he could offer he put me through to Customer Relations - and that was that as there was a recorded message saying they're closed Sunday!! Not happy! Will have another go tomorrow but if still no joy I've seen a good deal with Sky via Top Cashback £100 cashback, £100 m&S voucher plus lower monthly price. Very tempting. We still have dish from last time we were with Sky. Prefer Virgin but I need to save money.

Chardonnay

Hello SA! :wave: Have finally got around to reading your diary, and wow, so sorry to hear that you had such an awful year in 2013 with your OH's illness! Really pleased to hear that he's now in remission, but it sounds like you still have your hands full!

I can't believe with everything that went on, you still managed to pay a good chunk off your debt! You are an inspiration, and I look forward to sticking around to see how you get on in 2014....wishing a much quieter, happier, healthier year for you and OH!

Sun_Addict

Thanks Chardonnay! 2013 was the worst year ever for me that's for sure. Started off this diary thinking it would be a quite boring but helpful way to motivate me - little did I realise just how eventful life was about to become! Hopefully at some point my life will return to being boring again!