Well, where do I start with this one?
I guess I go back to June 2012 and the time when I had an extremely poorly Martin. He was in and out of hospital (once we'd cut our long holiday short and come home!) and he was literally losing weight in front of me. It was a very scary and stressful time.
It was even harder as Martin was my carer but we found ourselves in reversed roles and as well as looking after him I was having to look after myself too. That was not happening very well at all.
I went to our GP one day to talk about my concerns with Martin and just how poorly he'd become. She also asked how I was coping, I wanted to lie and say I was fine but she saw straight through that and said she was going to talk to their person who deals with social services.
By that weekend I had emergency carers in place. They can come in for up to 7 days to give social services time to find a more permanent arrangement.
I have to say that as nice as the emergency carers were, I didn't want them there!
They were there to help with my personal care and also to support me with the house too. It was such a difficult situation because I knew I needed the help but I didn't want the help! I guess I went with it though partly to stop Martin from worrying. He was going through enough as it was so the last thing he needed was to be worried about me too.
Social services and the community matron came here first and they discussed with me what it was that I needed and what support they could give me. I then also had a visit from the district nurse. I needed help from her because I use the Peristeen system but I can't use it on my own. That is the system I use to help me have control of my bowel movements. I hadn't used it for a while because Martin was just too poorly to help me. As you can imagine, because of this, I had got myself quite badly constipated....never a good plan!
The idea of having help with using Peristeen, from health care professionals, filled me with horror but they were fantastic! To them, it is their job, they don't find it difficult at all!
Next I had a visit from the manager of the home care company that had been assigned to me. I was pretty terrified because I didn't know what to expect but I was put at ease straight away and assured that my needs came first, what I needed and wanted from my carers was what they would do their very best to provide me.
I guess I go back to June 2012 and the time when I had an extremely poorly Martin. He was in and out of hospital (once we'd cut our long holiday short and come home!) and he was literally losing weight in front of me. It was a very scary and stressful time.
It was even harder as Martin was my carer but we found ourselves in reversed roles and as well as looking after him I was having to look after myself too. That was not happening very well at all.
I went to our GP one day to talk about my concerns with Martin and just how poorly he'd become. She also asked how I was coping, I wanted to lie and say I was fine but she saw straight through that and said she was going to talk to their person who deals with social services.
By that weekend I had emergency carers in place. They can come in for up to 7 days to give social services time to find a more permanent arrangement.
I have to say that as nice as the emergency carers were, I didn't want them there!
They were there to help with my personal care and also to support me with the house too. It was such a difficult situation because I knew I needed the help but I didn't want the help! I guess I went with it though partly to stop Martin from worrying. He was going through enough as it was so the last thing he needed was to be worried about me too.
Social services and the community matron came here first and they discussed with me what it was that I needed and what support they could give me. I then also had a visit from the district nurse. I needed help from her because I use the Peristeen system but I can't use it on my own. That is the system I use to help me have control of my bowel movements. I hadn't used it for a while because Martin was just too poorly to help me. As you can imagine, because of this, I had got myself quite badly constipated....never a good plan!
The idea of having help with using Peristeen, from health care professionals, filled me with horror but they were fantastic! To them, it is their job, they don't find it difficult at all!
Next I had a visit from the manager of the home care company that had been assigned to me. I was pretty terrified because I didn't know what to expect but I was put at ease straight away and assured that my needs came first, what I needed and wanted from my carers was what they would do their very best to provide me.
I had a care plan that had been put together by social services and the home care company provided a folder with all the information about my needs, my issues and the things I needed help with.
One of my worries was that I would have lots of different carers sent in to me and I really didn't want that. I wanted to have a core group of three or four people who would get to know me and my requirements.
To start with I found it very difficult to ask people to do things for me. The best way for me to do it was to write a list and give it to whoever came in, but even that I found quite hard to do. It is hard to sit down and let somebody else do what I felt that I should be doing, but then that is what has got me in trouble before because I would push myself to do house stuff but really pay for it in pain and fatigue later on.
The first few weeks I had my wish of just a few carers who got to know me and what I wanted/needed. Those first few weeks were pretty stressful anyway because we were still pushing for a diagnosis for Martin. He was still incredibly poorly and the Doctors were having real difficulty pin pointing what the problem was so I was actually very grateful to have some extra support both physically and mentally.
Over the following weeks and months we settled into a good routine, I'd have my hour and a half in the mornings and the half an hour in the evenings. This was just while Martin was in hospital. I was spending all the time I could down there and I wasn't getting home until about 8.30pm. I'd then have a visit which was actually really helpful because I had someone to talk to about Martin if I wanted to.
I have to say, at this point, a massive thank you to our friends who rallied around me while we were going through all this with Martin. It's at times like those that you really find out who are your friends and we have some real gems!
To start with I found it very difficult to ask people to do things for me. The best way for me to do it was to write a list and give it to whoever came in, but even that I found quite hard to do. It is hard to sit down and let somebody else do what I felt that I should be doing, but then that is what has got me in trouble before because I would push myself to do house stuff but really pay for it in pain and fatigue later on.
The first few weeks I had my wish of just a few carers who got to know me and what I wanted/needed. Those first few weeks were pretty stressful anyway because we were still pushing for a diagnosis for Martin. He was still incredibly poorly and the Doctors were having real difficulty pin pointing what the problem was so I was actually very grateful to have some extra support both physically and mentally.
Over the following weeks and months we settled into a good routine, I'd have my hour and a half in the mornings and the half an hour in the evenings. This was just while Martin was in hospital. I was spending all the time I could down there and I wasn't getting home until about 8.30pm. I'd then have a visit which was actually really helpful because I had someone to talk to about Martin if I wanted to.
I have to say, at this point, a massive thank you to our friends who rallied around me while we were going through all this with Martin. It's at times like those that you really find out who are your friends and we have some real gems!
I will also point out that Martin was eventually diagnosed with a mega rare malabsorption illness called Whipples Disease (Nothing to do with the Whipples Procedure which is something completely different). Nothing that he was eating or drinking would stick, it would go straight through or he'd bring it back up. This meant he was losing weight at a ridiculous rate. But they found it and it was treatable.......with antibiotics.....twelve months of them! ;-) After a nearly three week stay in hospital, he was ready to continue on his road to recovery back home! :-)
After the first few months of having the carers in, we had got ourselves into a decent routine. The only issue then was that my carers started to change. Obviously it is a job and people come and go but when you are dealing with people's personal care it is really difficult to have changes in personnel. And I found it incredibly hard, there were only certain people that I could handle helping me to shower for example. It is a very personal thing, I'm still relatively young and so I needed to preserve my dignity as much as I could........and this was one thing I felt pretty strongly about.
I realised something quite early on. Those carers that came in and spoke to me like another human being, who wanted to engage with me, to understand my illness and how the disabilities affected me, those were the carers that fast became my friends, who I had confidence in and I felt I could trust. It was the carers that came in and you were just a client on their list, it was just a job to do and they didn't really want to know you, they were the ones that I didn't gel with and I couldn't trust with the care when I was vulnerable.
As time went on though I had really got used to having the carers there, especially the morning slot. I started to think that actually I wanted them to stay helping me......a complete turn around from when they first came in!! The issue would be whether social services would agree that I needed it.
I had my review from social services this January just past. It went really well and the lady who came, my contact at social services, said she had no reason to stop my care but we would just tweek it a little.
I had my review from social services this January just past. It went really well and the lady who came, my contact at social services, said she had no reason to stop my care but we would just tweek it a little.
We have stopped the thirty minute afternoon call as we don't really need that now Martin is able to help out again but she was definitely going to keep the hour and a half for six mornings a week. I also get two social hours a week which is to help me to go swimming but also to do things like going out to places like the zoo or cinema or any similar types of things to enable us to get out of the house more.
The other thing we discussed was a new scheme called Direct Payments. I had heard of it before but I wasn't sure how it worked or how it would affect me. Essentially it puts the control back into my hands. The council give me the money (wages) and I am then the employer. I am given two different rates of pay, one is if they come as an employee, this means that it is my responsibility to sort out their tax and National insurance (NI) or the other rate is if they go self employed, they get a couple of pounds an hour more but they are then responsible for their own tax and NI.
The council also give me the money to take out Employment Liability Insurance so that everything is covered. They then set up an account that I am able to pay my carers wages from. It comes with a card attached to that account so that I can pay for things with the card if I need to too.
I get to choose who my carer will be and they can be a family member or a friend or you can just advertise for someone! The only thing is that they can't live at the same address as you.
I'm very lucky as I have a lovely friend who came in at short notice but I trust her completely. We get on very well......she and Martin get on very well too and it feels like a really good arrangement between us both. We are in our third week and so far so good! :-)
The other thing we discussed was a new scheme called Direct Payments. I had heard of it before but I wasn't sure how it worked or how it would affect me. Essentially it puts the control back into my hands. The council give me the money (wages) and I am then the employer. I am given two different rates of pay, one is if they come as an employee, this means that it is my responsibility to sort out their tax and National insurance (NI) or the other rate is if they go self employed, they get a couple of pounds an hour more but they are then responsible for their own tax and NI.
The council also give me the money to take out Employment Liability Insurance so that everything is covered. They then set up an account that I am able to pay my carers wages from. It comes with a card attached to that account so that I can pay for things with the card if I need to too.
I get to choose who my carer will be and they can be a family member or a friend or you can just advertise for someone! The only thing is that they can't live at the same address as you.
I'm very lucky as I have a lovely friend who came in at short notice but I trust her completely. We get on very well......she and Martin get on very well too and it feels like a really good arrangement between us both. We are in our third week and so far so good! :-)
The whole scheme definitely suits Martin and I better than having my care supplied by a company. It is cheaper for the council because the money they give me is a fraction of what they were paying the company. It gives us more choice, more freedom and definitely more control and I can certainly see why they are trying to move people over to this. But I can also understand that it wouldn't suit everyone.
Fingers crossed this is a permanent arrangement for us! ;-) XxXxX
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