Answers to comments.

The Dr doesn't want to increase Steve's anxiety medication as he believes that Steve should be able to cope. He feels increasing the dosage would be for my benefit not Steve's. 

We have no social services involvement whatsoever, it isn't deemed necessary.

We don't receive attendance allowance as Steve can manage physically. Mentally he struggles.

Canals

There are 2,200 miles of navigable canals and rivers in the UK.

Some are joined up but others like the Mon and Brec aren't.

There is more information here.

 https://canalrivertrust.org.uk

We originally bought a narrowboat as we intended to travel on various canals once Steve retired. Some canals are narrow, have narrow locks so can only be navigated in a narrowboat, maximum with 7ft.

Unfortunately his stroke put paid to that plan so we sold the narrowboat and bought a widebeam, ours is 10ft wide and some are wider, we looked at a 12ft wide boat but felt it was too big for us.

Another day done.

Steve is on medication for his anxiety, the Dr is reluctant to increase the dosage.

I will look into direct payments Deborah.

I woke up at 3a.m. to find I was hanging on to half an inch of mattress and I had no covers over me. I got out of bed and rearranged Beano, Steve and the covers and got back in to bed. I was unable to get back to sleep so I read until 7, when I got up, made Steve a cuppa and walked Beano.

After Mondays abortive trip to the audiology repair department Steve decided we needed to be there as doors opened at 9 a.m. This meant driving through Reading town center in the rush hour which is always a joy.

Unfortunately the car windscreen was iced over so we didn't leave as early as Steve would have liked, still we were on our way just after 8.

The journey took an hour and a half and Steve was finally able to get his hearing aid repaired.

From there we went to work, Steve has had two letters containing contradictory information regarding his payments in lieu of notice. I walked Beano for the half an hour whilst Steve discussed the letters and finally received confirmation of the correct details.

We then drove to the supermarket as Steve wanted fish for tea, he's not very good at judging quantities, so we have enough fish for a few meals and some of it is now in the freezer.

We arrived home just after midday whereupon a neighbour arrived, Steve had offered to pole her boat back in beside ours, she was on the tiller going backwards, having someone on the front with a pole makes it easier.

Once the boat at was moored the neighbour came in for a cuppa to warm up.

By now it was gone 2 and Beano needed a walk. On the way we start chatting to some newbie boaters, they wanted to get to Bristol for Christmas and couldn't understand why so many locks were closed. We explained about the winter stoppages, which is where parts of the navigation are closed so the locks can be repaired. They'd also been assured that all the locks would be manned by volunteers and that they wouldn't be expected to work the locks themselves. They were shocked when we told them the vollies only work April to October, only at weekends and only on a few locks, not all of them.

Leaving the saddened newbies to console themselves with a bottle of wine we got back to the boat. By now it was 3:15 and I still hadn't had breakfast or lunch.

Not a good day.

Steve had a fall yesterday, he was emptying the ash pan and leant on a fence that wasn't there. He was uninjured but shaken up, as usual he decided to self medicate with alcohol.

I had a blood test this morning, I was quite excited as Steve had offered to stay home with Beano. I had planned to sneak into Sainsburys to look for new trousers. I only have two pairs and they are both full of holes.Qq

Unfortunately best laid plans and all that, my excitement must have shown and Steve decided to come with me, no new trousers this week then.

I did have a quick word with the nurse about my twitchy eye and I explained the ongoing problems caring for Steve. She was very kind and sympathetic. But her basic advice was "Suck it up sunshine".
There is nothing else to be done.

Being a cynical bitch

I can't help wondering what bad news was slipped out under the radar when not one, but three famous people died in one day!

How could you choose.

Steve went to stroke club today, I made a jam sponge for them.

I took Beano to DD1's and collected some parcels, stuff to that Steve had ordered.

DD has more information about our prospective new grandchild, definitely a boy, definitely eight years old.

The lad was adopted as a tot but has developed a medical condition that the adopters are not prepared to deal with so he has been returned to the care system!

And now I've developed a twitch

I'm keeping count of how many days it is before Steve's behaviour starts to get to me again.

I saw my DD's on Friday, I'm collecting my Dgd's from school on Monday and it's stroke club Tuesday so I'm hopeful that these social interactions will keep me sane for a few days.

Steve's meeting with his brother on Friday cheered him up and he was fairly calm over the weekend.

But today was a bad day, Steve got up late, we drove to the drop in audiologist department at the hospital, the journey took twice as long as usual because of road works. When we arrived the department was heaving, standing room only so he wouldn't stay, he left and we will try later in the week. All this means he is stressed and irritable.

Some days I feel as though my head is wrapped in cotton wool, nothing seems to sink in and I have trouble doing day to day tasks. My memory has never been brilliant but now it is appalling. This always improves if I can get a break, unfortunately most of the time Steve's anxiety is at fever pitch so the minute I get home he starts again.

I'm not at the cotton wool stage yet but I have developed a twitch in my right eye, oh the joy of it!

The sound of silence

Obviously I don't wear my hearing aids in bed, though I have been known to get into bed and into the shower still wearing them

This proved to be a bonus last night as the row between a floating trader and an aggrieved wife has now broadened to include the landlady of a nearby pub. 

The injured parties then took to private messaging EVERYBODY in their contacts list.

I didn't sleep well last night but I wasn't online so I knew nothing of this until I got up and discovered I needed to delete eleventy billion pm's

At some point all this activity triggered a response from Facebook as the last message I received was from another trader advising me that the protagonists have had their Facebook privileges revoked.

Maybe it would be a good idea if people had to take a breathalyzer test before they could post!

Keep buggering on

My son visited Thursday, he gave me cards and chocolates.
He's a firefighter, he's currently moving around between various stations covering for holidays and sickness for six months. He's hoping to get assigned to a station full time soon.

He absolutely adores Beano and the feeling is mutual, as soon as he sat down Beano climbed on his knee. His flatmate has a border collie that he feeds and walks regularly as they both work shifts.

Friday I had a cream tea with my DD's. Much better than stuff, it was such a treat. Steve went for lunch with his youngest brother to discuss what's happening next with the house sales. One has sold, two are due to sell before Christmas and there is another project in the pipeline.

Who needs Coronation Street (other soaps are available)

I don't watch any of the soaps, a friend once told me that my life was like a soap opera anyway.

I am a member of a lot of Facebook groups, some to do with canal boat living, some craft groups and some for the villages near where we moor. 

Last night a row erupted on a canal traders FB page. It seems one FB trader has pinched another traders husband, dear God I only wanted to know the opening times of a local trade boat!

I'm always amazed at the things people's on Facebook, umpteen selfies, some with added puppy ears why? Just why!

Umpteen post about how someone's new boyfriend is The One, it's true love, well for a week and then it's all over, complete with name calling and recriminations.

Tissues at the ready

I may have a new grandchild on the horizon, an eight year old, gender unspecified as yet.

DD1 laid on a cream tea for me today, all prepared by a professional chef, he happens to be her DH. I always say I don't want 'stuff' I'd rather have a meal our or a trip. By having the tea at her house it meant we could have it at a time to suit us, midday, and I could take Beano with me as Steve was meeting up with his brother and Beano hates being left alone. DD2 drove me over to DD1's so I had a cream tea with a gin and tonic!

DD1 has planning permission to extend her house, she has found a builder who can start immediately. He comes highly recommended by people in her village. He had a job booked in but it was cancelled at short notice as the customer decided they didn't want the disruption over Christmas.

DD is prepared to accept the disruption as she is desperate to offer a home to the eight year old mentioned above who needs somewhere from early next year.

DD1 cannot afford the full price of the extension and we will be receiving our share of the profits for the first house sale imminently. I think it's serendipitous.

Karma is a bitch

Thank you all for your comments and your continued support.

Steve and I had lunch out today as a birthday treat, at one point Steve started complaining about something I was doing, I smiled sweetly and said "Since its my birthday, how about we have one day without you complaining?" He shut up!!

And now for karma, you may remember my ex tenant and all the grief she caused me. She has posted on Facebook this morning, she is having to move out of her current house at very short notice. I don't know what she's done but it seems her only recourse is to apply to the local council to be rehomed.
Unfortunately this is not an option as she and her husband defrauded the local council of thousands of pounds by claiming housing benefit on my house and on two other properties, whilst letting out the other two properties!

Blood test.

My blood test has been moved to 28th November, I shall make the effort to go.

I took Beano out for an hours walk today, I used to walk him for an hour or so every day plus 2 or 3 shorter walks but then Steve decided to come on every walk with me which meant the walks were reduced to a slow stagger over a short distance.

Steve worries when I take Beano out, what if I trip, what if I fall in the canal, what if Beano falls in the canal. I told him I'd be out for an hour and made sure I wasn't late back. I took my phone with me too so Steve could phone if he got anxious.
I will now do this regularly, it will be good for me and Beano.

Steve has decided he wants to travel further on the boat next summer. I have agreed but I think he is wildly overestimating his ability and stamina but we will give it a go. I think it will take 3 or 4 months to cover the distance but we will see.

I'm happy enough to try the trip but I'm dreading the isolation. I know it will be three months when I don't get to have a conversation with anyone. It sounds unkind to say it but I cannot have a conversation with Steve. He refusal to wear his hearing aids means that if I try to talk to him, by the time I've repeated everything three times I've lost the will to carry on.

Normal service will be resumed shortly

Moira, Shelley, I tried not telling him until the last minute but he gets really stressed if things are sprung on him suddenly.

I will try Moira's suggestion of telling him I can cope with his depression but cannot take the blame for it.

Mindo, no there is no one who can help in Steve's family, there is one estranged sibling, and one alcoholic sibling, the one who is visiting has his own business and a young family.

I went to stroke club today and cooked sausage and mash, Steve stayed home but was a little better when I got home. We have had a chat about things but I think he still feels everything is my fault.

At least there was a sympathetic ear and some hugs at stroke club., they also gave me a birthday card.

The blood test has been moved as the nurse is out sick, it's now on Thursday. Well that's a treat, it's my birthday on Thursday. 

I'm struggling a bit at the moment as something happened within an online group that I am part off, it left me feeling a bit raw, normal service will be resumed shortly!

Busy week

Kate I had one of those days today, I just wanted to sit and howl. Unfortunately I had to collect the grandchildren from school and as I can't drive and cry at the same time I just drove.

Every day it's the same, continuous complaints and criticism, I just find it so wearing.

Anon, according to the medical people I've seen there is no such thing as post stroke personality change. They mostly seem to think I'm imagining it!

This week will be busy which means an even more stressful time.

We needed to buy coal. This meant a trip out as the coal on the marina is very pricey. Steve got upset as he couldn't work out the percentage saved between the marina coal and Aldi.

Today I tried to fill in the ESA form, I couldn't do it. Steve had a meltdown, tried to do it himself, couldn't do it. All my fault along with doing the washing wrong, not printing out a form he wanted, not walking the dog correctly. I got one bollocking after another, lost  my temper eventually which just caused more problems. 

Later I collected the dgd's from school, I'm doing this up until Christmas as DD has counselling every Monday. Seeing the dgd's cheered Steve up, they make him laugh, they have accepted that he has changed, they say he has an ouchie in his head.

Tuesday I'm cooking for stroke club, I enjoy it but Steve would prefer me not to do it.

I have a blood test booked for Wednesday, this will send Steve's stress levels through the roof, I'm wondering whether to cancel it, it might be easier.

Thursday is a free day I think, hopefully we can relax.

Friday one of Steve's brothers may visit, we may go out for lunch, not sure yet.

Big Girl's Knicker Time

Thank you for all your comments and suggestions, I do appreciate them all.

Steve does have dementia type symptoms, medical opinion is currently that they are caused by the stroke, we will see.

On Monday I will put on my big girls knickers and phone DWP to see what we do next. I'm expecting it to be a long and tortuous experience

Last night we had one of the dgd's to stay, she is 11 and very enthusiastic about sewing and fabric. Earlier in the week I'd taken my car in for a minor repair, I popped into a nearby fabric shop to buy cotton cord as I knew dgd wanted a new PE bag made. I spotted a remnant of camouflage fabric and spent 95p on it.

Steve went to bed early as always, dgd and I cracked out my sewing machine and fabric stash.

We made a blue PE bag for her, she liked the camouflage fabric but I explained that it was too thin and not robust enough to use as a PE bag, we used some blue curtain fabric. We also made  eleventy billion scrunchies, we made some in gingham, some in Christmas fabric and some in the camouflage fabric. We both had a lovely time.

I'm horrified

By the amount of people who are struggling, every time I do a post about caring for Steve I get so many comments, mostly on the same theme of  carers being told "There is plenty of help, you just need to look" and the reality that there is no help.

If you are caring for someone who has had a stroke look for

 https://www.stroke.org.uk 

There are groups all around the UK. They provide the three and a half hours respite a fortnight I get, it isn't much but it is something. They will also provide transport to and from the venue.

Most carers groups are aimed at specific disabilities and don't deal in generalities.

My children do help where they can but one of my DD's has three jobs and four children. Steve is their step dad not their father but they still do what they can.
The other DD saves little DIY jobs for Steve, we go over and he puts up coat hooks and curtain rails etc. She could do it herself but knows he likes to be useful.

One of the biggest problems with Steve is his refusal to accept that he needs to get out, either for my sanity or his. He also refuses to accept that he is disabled which is why he will soon stop going to stroke club. He will not attempt to join anything else because he's worried he won't cope. He is his own and my worst enemy. He doesn't understand why I need a break, he claims to be happy pacing the floor or sitting playing games on his tablet 24/7. I need some social interaction.

Continued from yesterday.

Pat, yes we didn't apply for the job did we and people don't understand unless they have been in the situation. Swanning off for a few days would be about as useful as abandoning a toddler for a few days and expecting them to behave better on your return.

In the beginning I was assured there was help available I just had to apply for it, it was very stressful constantly looking for  help. I was encouraged to ensure I obtained all the help I needed. I spent a long time running round in circles looking for said help. The reality is that there is absolutely fuck all help for me and the thousands like me.

Col, I have seen the Dr, I got the same claptrap about just needing to look for help and when pushed to offer me something the carers monthly email was all there was. The email covers a huge area both in terms of distance and needs. So there are long lists of clubs for children and their carers but nothing suitable for Steve and myself. 

The Stroke Association are very helpful, they provide the three and a half  hours break I get each fortnight this costs £50 a month. What about those who cannot afford £50, I believe that they will waive the payment in these cases but some people are too proud to accept charity. What I will do when Steve refuses to attend any more I really don't know.

Steve appears fairly well on the surface, he can walk and talk normally for short periods.

But he is in a constant state of confusion and anxiety, it must be terrifyingly him.

When I got home yesterday after getting the car fixed the first thing he did was to shout at me. It's like when you lose a child for a few moments in the supermarket, huge relief for him that I had returned but then lashing out verbally because he'd been scared.

On a lighter note I bought Beano a small ball as I noticed a while ago that he chased after a ball of wool I dropped.

We take the ball with us when we walk him around the marina, Beano doesn't have a Scooby what to do with the ball. He runs after it when I throw it but doesn't pick it up. He just stands beside it wagging his tail enthusiastically until I pick it up and throw it again. This makes me laugh watching him.

Last Wednesday I wrote this.

Today was emotional and exhausting, it was Steve's medical incapacity dismissal meeting.

Present at the meeting were three trustees, an external HR expert, the works HR officer, Steve's line manager, Steve and myself.

The meeting took about an hour, the panel can make one of three decisions.

We will be informed of the decision in writing within five working days.

Today we received the decision, Steve has been dismissed on medical incapacity grounds.

Taken all round it's the best decision we could expect.

We can now move forwards, Steve will probably need to sign on, we will look into the next steps.

Steve has been irascible and short tempered. I'm getting shouted at regularly. He has also started talking to himself, which wouldn't normally matter but it is a non-stop litany of complaints about everything I do and say!

Application

Steve had a visitor today, she has helped him apply for a blue badge, it's a waiting game now to see if he gets it. I had looked into it but given up as it was so complicated and Steve was constantly interrupting me when I did it and contradicting everything  I did.
It took ages to compete the form and it really bought it home to me just how much life has changed, especially when I realised that Steve does nothing on his own so I am constantly on call.

Bit of a gap.

Yes there was a bit of a gap in my posts, something happened and I've written about it but I cannot publish the post until the end of next week.

As for the challenges of living aboard,  I think I've adapted pretty well.

It's hard work living on a boat but no harder than my early life as I grew up in the early fifties. I also lived in houses that my ex wanted to do up, and then didn't. In the 1970's I  had a small child, no central heating and no kitchen or bathroom. I've spent many years carrying coal and logs, boiling a kettle for hot water etc so I'm used to it.

As for the washing, I have a washing machine and when it's sunny I can do a cold wash on solar power.

When we are in the marina we can plug into shore power and I can do a hot wash.
I have an airer that I either stand under cover on the back or front of the boat or I can stand it in the shower. Once the clothes are nearly dry I stand the airer in front of the log burner before I go the bed and in the morning everything is dry.

It's only money.

It was cold yesterday and we had to manage without any heating as  we had some work done on the boat. We had the bedroom door changed over, it used to open inwards but didn't open fully as it opened against a wardrobe and the bed. This meant I had to part open the door, walk into the room and then close it before getting into bed. It now opens  into the corridor and is much more convenient.

We also booked the engineer to fit an immersion heater which he did, we asked him to check out the flue on the multi fuel stove and the grill under the hob. The flue is not fit for purpose so we've ordered a new one and our current one has had a temporary repair.
The grill cannot be used until new parts have arrived for it.

We had torrential rain on Wednesday night and on Thursday the jetty and parts of the marina were underwater. The local sluices are not automatic and the person who should have opened the slices had a broken arm. Eventually someone was found who could open the sluices and the water levels slowly returned to normal.

£3 haul

Today I helped at a local jumble sale so I spent a couple of hours with people to talk to.

I've been asked to help at one towards the end of the month, I will if I can.

For the grand total of £3 I bought:-

5 large foil trays to use when I cook for stroke club.
Some hooks and eyes, the sort used with net curtains.
A tray of 12 cans of fizzy drink.
A tee shirt for a dgd, it has a llama on it.

It's been an busy few days

Sunday I cooked a beef joint, I stretched it to do a roast dinner with enough left for sandwiches and another meal as well. I also made some leek and potato soup and stored it in jars in the fridge as I knew there would be times when I was too knackered to cook.

Monday as arranged I looked after seven of the grandchildren whilst their parents went to my ex MIL's funeral. Once my son in law got home from work I left him with his four children and I brought the other three of the children back to the boat with me. I did my weekly shop on the way home. I spent under £30 which I was pleased about. Once home I made a meal for the children and their mum collected them at about 7:30.

Once they'd left I made thirty portions of rice pudding for stroke club. It was very well received by the members.

Tuesday I went to DD1's for a couple of hours as we'd not had chance to chat on Monday.

Wednesday we did very little apart from walking Beano, Steve is always tired the day after stroke club. It was bitterly cold but I did manage to get one load of washing dry on the back of the boat.

Thursday two work colleagues visited Steve, I made sausages rolls and chocolate brownies for them. Once they'd gone I cut out a bag I want to make, I really want to do more sewing whilst we are in the marina. I didn't get as much done as I wanted as Steve couldn't find his masking tape, cue much rampaging around the boat cursing and swearing. Eventually I found it for him in the first place I looked!

I shall suggest he has a sort out of his tools and consumables today, he has his stuff spread out in various places and wastes a lot of time looking for things.

I'm hoping to get some more done on my bag today, it's wet out and Beano hates the rain so he won't want to be out for long. I have a pan of veg soup simmering on the stove I bring it to the boil on the hob and then leave it simmering on top of the morso stove. Steve won't eat it but I've finished all the leek and potato soup and I find it useful to have some in the fridge for when Steve wants to eat crap.

I've finished making all the make up removal pads but I'm still knitting facecloths. I had to frog the socks I was making so I need to restart those. I also have a pattern to knit Beano a coat, some of the dgc's need draw string bags and I want to make more cloth shopping bags as the ones I made before are full of the kindling I collected throughout the summer.