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.