My wife is my full time carer and I receive care and have done for many years. I created a blog site to encourage, support, inform and entertain carers and those being cared for.
It can be found at:
Thank you Mike for sharing.
Thanks Mike
Lots of interesting posts
Thanks Mike
Interesting and thought provoking.
My gripe, someone on the telephone says, what WAS your name. I very often reply " it still IS Mrs W…
I am always looking for new subjects to blog on that will help carers and those they care for.
If you check out my blog site you can contact me directly.
Here is a blog I wrote about carers:
The long goodbye
Carers are more than friends, but not quite family, they are professional and yet close, carers are in a group of their own. Because of this it’s very difficult when it comes time to change carers. This happens for several reasons. They may leave the agency you use; they may move, you could move or sometimes events conspire to make it impossible to continue with a carer.
Over the years we’ve had that happen more than once. One carer became just focused on me and lost sight of the fact that she was there to support us as a couple (if a carer doesn’t support Mary they are missing a vital part of the job), yet another was only employed temporarily to cover for a carer who was long term ill, some are holiday cover, while others have moved jobs or become ill, or leave to have children, whatever the reason we have to say goodbye to a carer it is never easy. Many times, we have kept in touch, although that isn’t always possible.
There is a kind of bereavement losing a carer. You become so close, even to ones that you know for a short time. I guess it’s the level of intimacy both physically and mentally that is involved in care. I blogged about this before, “Care, a strange relationship.” When you no longer see a carer regularly it’s like losing someone very close. An aside here, I keep saying ‘a carer’ which makes them seem very impersonal. That’s because I want to keep confidentiality. I would rather use their names, but that would be inappropriate. So just replace ‘a carer’ with a name of a really close friend or family member when you read that.
I really hate it when we must change carers. Being a person who dislikes change doesn’t help. But the fact I am a people person makes it very difficult. I invest time and energy in getting to know my carers. Energy is a valuable commodity for me. More valuable than money, I have very little of it. So little that it’s one of the reasons I have carers in the first place. Not only am I physically limited, unable to stand or walk. But I also have very little energy reserves. So, I must budget it for the day. If I used my energy getting washed and dressed, I wouldn’t have energy to enjoy the day. By enjoy, I don’t mean much more than be bright enough to laugh, joke and chat, watch TV, eat my food and write this blog. All these things take a colossal amount of energy.
If you have ever had a serious illness, very serious, not a cold, you will know that the smallest thing can be exhausting. My carers don’t just help me because of my physical limitations, although obviously I need that, they help me reserve my energy. So, when I then chose to expend some of that energy on getting to know them, that is an expensive choice on my part. I have allocated a part of my daily budget of energy on them. That’s a mark of how I value them, I make that choice. I enjoy their company.
When I lose a carer, I feel like I lose a big part of what makes my day and a part of what I look forward to, it’s like I lose part of me. Each carer I have is unique and has qualities that make them special. I wrote a blog all about my wife “The most amazing carer of all.” Because I recognise that Mary is my main and best carer. But my other carers are also really incredible, they have got Mary and I through difficult times. They have put themselves out, above and beyond their jobs. It is their cheeriness, strength, aid, comfort, help, encouragement, smiles, warmth, friendliness and wonderful nature’s that get us through. I know most of my carers past and present read this, that’s not why I have been positive, it’s because it’s true. Many of my carers have been kind enough to say they enjoy being with Mary and me. The reverse is true in spades. They really are the most incredible people and I value them so much.
If you are reading this and looking at going into care as a profession, or you are currently a carer, know the difference you will or do make. You won’t always get to look after people who have mental capacity. Not everyone you look after will show appreciation. Some people can be downright rude. But often that comes from a place of pain. You will still be transforming their lives. They may not be able or choose to say it, but you will be a great blessing. Just as our carers are to us. One thing I know is that carers are amazing people. You are very valued by me and I know often undervalued by society.
Every time I lose a carer it’s like a long goodbye. Painful, slow, drawn out. I want to avoid it, but I can’t. I just have to look back at the good memories of wonderful times spent with them and if we keep in touch, look forward to meeting up in the future.
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Read more of my blogs at: http://howcaring.com
Mmm … interesting … I presume a reference to us , Mike , along the way ?
The odd nod to us won’t do amiss.
In your situation , do you look apon the carers as " Partners " … without them , your world would be a lot different ?
Or , mere aides , there to assist in the difficulties associated with your situation ?
( Not often do we have the opportunity to " Liaise " with a " Caree " without us providing the care. We tried that with a
small group back in CarerWatch days … less abled but no family / kinship carers … a disaster would be putting it mildly ! )
Green Paper on social care … now more than two years overdue … what changes would you want to see from your perspective ?
Stretching that a little , our role in social care ?
Hi Chris,
Sorry, you have lost me a bit with your reply.
My blog was about how amazing carers are, how much I value and rely on them. How difficult it is when I lose one.
I wanted to encourage carers so that you would all know how important you are to those you care for, even when they don’t say it.
Thanks Mike
No problem , Mike.
Your relationship is with paid care workers … and not us , family / kinship carers ?
Just took the opportunity to try to open a dialogue to see things from your perspective when we are involved.
As mentioned, very rare for us to liaise directly with the less abled on matters concerning us both … albeit from
different angles ?
Less abled / family and /or kinship carer … that Green Paper will affect us all … around 22 / 23 million of us
… if we tack on the elderly ( Without carers …paid or family ) as well !
Hi Chris,
On my site I have a post entitled “The most amazing carer of all.” it’s about my wife (unpaid carer, family member) and expresses what I feel about how brilliant I think she is. Wider than that I believe all carers are undervalued and under appreciated, both the paid and unpaid ones. The paid ones are paid far too little and the family and friends who give up time and pour out themselves on the care of their loved ones should not be left in such financial difficulty as many are.
It’s sad that carers allowance is around £65 a week and that, unlike PIP it counts as income. My blog site talks quite a lot about my views on care and the state, carers, quality of life and my views on things generally. I try to be upbeat and humorous, but that doesn’t mean I don’t see it as a serious issue.
I don’t know what will be the result of the green paper, but on past experience of Conservative party policy I would not expect much.
I obviously don’t know your situation. We are fortunate in that my wife gets support from paid carers to look after me. I need 24/7 care, so she has to have breaks. It isn’t easy for her having different women coming in each day, but she needs the help.
I have always championed communication. It is the only way to move forward in anything. I chat to my carers and my wife about care. My blog site (howcaring.com) was created to help broaden the discussion about care and it is working, many people have found it helpful.
I am happy to chat on this thread or via PM. Although I don’t often check this site so expect a delay in my responses. The quickest way to get hold of me is on my blog site messaging me.
Thanks Mike
Thanks Mike.
Certainly fortunate in the caring department given the numerous horror stories out there,
Always pleasing to have a direct communication link with a caree on the forum … a rare occurence over the years.
Anything we can do from our angle ?
Finances / housing all okay ?
Hi Chris,
The big problem we have is finding a suitable house. We own our home, but it’s not suitable. I sleep in the front room and can’t access the bathroom/shower. I blogged about it.
The OT suggests we get a council house as we can’t afford the type of house we need. This house would not sell for enough to get a suitable accessible property in this area. We live in the South West.
So any suggestions on where to look for low cost good quality accessible housing would be much appreciated. Our sons live further North. It’s surprisingly difficult to search for housing to buy that’s adapted for wheelchairs and have wetrooms.
Thanks Mike
Hi Mike.
Simpliest solution would be to take a virtual tour around the UK via one of the online supermarkets for property.
( Key word searches … WETROOM / WHEELCHAIR ADAPTED. )
One interesting link … PRIME LOCATION :
https://www.primelocation.com/discover/buying/how-to-search-for-disabled-friendly-properties-on-primelocation/
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How to search for disabled-friendly property.
Looking for a disabled-friendly or accessible home on PrimeLocation ? Here’s how to do it.
Take the suggested seling price for your own property and start from there.
If adaptions are needed , and a rough idea of cost / time , could be factored in.
Bungalows ? Many in the " North " … 3 bedroomed ones less than £ 180k … by " North " , I’m using my own manor …
Worksop , North Nottinghamshire … as the Southern boundary.
Anything done in conjunction with a LA or housing association would severely limit your choice of manor … and neighbours ?
If using Google , you can take advantage of the " Little yellow man " … bottom right … on any map.
Use said man to take yourself on a virtual street tour … I have done that myself … to get a " Feel " for any manor.
Problem will be changing your abode … new carers / save level of care … in another manor ?
Mike
Please be aware that if you sell your property, or downsize to a cheaper owned one, any capital released would mean you couldn’t claim any means tested benefits and you would be expected to spend that capital on care until it comes down to about £16000 ( for most benefits, it can vary).
Likewise if you gave any of that away or spent it on anything other than care, they would claim “deprivation of assets” and refuse to pay for care.
It does depend on whose name the property is in, but it is a mine field and I would suggest legal advice.
A move might be practical, but there are financial effects too.
Thanks Chris, I will try that as a search idea. You make some good points.
Mrs Average, I should have mentioned that I realised we would lose our benefits if we sold up and got a council property. Not sure we like the idea for many reasons though. Thanks for the heads up in case we hadn’t realised though. Everything you say is spot on.
Your welcome , Mike.
I think you should look for housing on the secondary market on sites-catalogs that offer to choose a suitable house without a commission. I know about one such site Flatfy. it is international, so there is definitely an analogue in your region
Thanks harry_1907 I had a look at your suggested site, it doesn’t seem to have the UK, unless I am missing something. But I will continue to search other sites.
Thanks Mike