As of 2019, there were eight point eight million carers in the UK, that is one in eight people since Covid-19 this has increased by four point five million people who are caring for older, disabled or seriously ill relatives or friends. Around 600,000 of these are children.
When I was first diagnosed with MS I met Jen via one of the first Facebook groups I joined. Jen is married to Dave who has primary progressive MS, Jen is his carer. What struck me about Jen instantly was what an amazing person she is and I quickly began to realise that while she was a carer she also had her own demons to deal with.
I am aware this post is at the end of carers week 2020 however carers need recognition and support every day of the year not just for one week to try and create a better life for all those who care for someone whether that be adults or has now become very apparent during COVID-19 more and more children have become carers.
Carers can claim carers allowance which amounts to £67.25 a week but only if you care for someone over 35 hours a week, Jen will go into this in more detail below.
Jen has given me permission to share her story and all words her own from here on in.This story will take you on an emotional rollercoaster as Jen shares the raw details of her life as a #Carer. Click To Tweet
This story will take you on an emotional rollercoaster as Jen shares the raw details of her life as a carer.
However, just before we go into Jen’s story I would like you to take a moment to write to your MP to ask them to ‘add their voice’ to Make Caring Visible to help raise awareness, all MPs need to hear loud and clear that there is a real need to improve the support and recognition of the millions of unpaid carers looking after our friends, family and neighbours. You can do so by clicking here.
IT’S CARERS WEEK AGAIN!!!
This year, I’m going to try and talk about various aspects of my life as an unpaid carer of someone with advanced MS and try and raise awareness of us and our lives.
Relationships are one of the hardest things to maintain whilst being a full-time carer, and not just with friends. As Dave’s MS took hold and he required more and more complex care, I found it incredibly difficult to separate being a wife and being a carer.
Sadly, I ended up just being the latter and we’ve effectively just been 2 people who live together for several years now. The weight of feeling like I HAD to stay because I’d made promises when we got married was very difficult and I began to resent him.
It wasn’t until we decided to unofficially separate and stop wearing our wedding rings that the weight lifted. Now I was staying because I WANTED to, not because I felt I had to. It also didn’t help that we had to get separate rooms just 6 years into our marriage, removing the last bit of physical closeness we had. As his cognitive function has declined, it’s gotten more difficult as he can’t remember things like our wedding, trips we had or gigs we’ve been to. It’s almost like were never a couple at all.
But, we have a great relationship. There’s love there in some form and I’ll keep him out of a care home as long as humanly possible and take care of him and he puts up with my rants and mood swings. Fair trade! 😂
One thing about Dave is that he’s never made me feel guilty for needing time away from the situation. He’s accepting of carers and care homes for respite as long as he knows I’m getting rest and he understands I need to visit family. For that, I’m grateful as I know other carers don’t have it so easy with the people they care for. Guilt trips must be so difficult to deal with when all you want us a rest. That’s not to say ALL carer relationships fail. Some don’t struggle with their feeling like I did and are able to separate their roles. Getting good care packages and support with the person needing care can be a huge help as it takes some of the caring burdens from the carer and keeps them more as a partner.
Relationships with friends can be tough too. I’ve been incredibly lucky in that I’ve kept all my best friends over the years and they understand my responsibilities and never make me feel bad for cancelling plans or not being able to meet up or go on trips away.
My oldest friends from back home in Manchester come to visit me and stay at mine when they can and it’s SO appreciated. Plus Dave likes seeing different people, and he ADORES Ian’s visits as its usually bonkers drunken silliness! I also have some awesome local friends who I made through work and they’re just awesome. Some of the most incredible people I’ve met have been through MS Support groups online. Having that bond with those who suffer MS and care for those with the condition is amazing – they TRULY “get it” as nobody else can 🖤
Relationships with family can be tough and something I sadly struggle with. Because I live so far away (327 miles to be exact), I find myself keeping them at arm’s length for my own mental health and we don’t have a lot of contact. This makes things easier as I don’t miss them as much – when I come back from my folks it can take a good few weeks to get out of the post-visit slump and emotional stress of missing them so much.
All in all, aside from the breakdown of mine and Dave’s relationship as a married couple, I’ve been lucky. I don’t see my friends and family half as much as I’d like, but I get by. I have a family that love me and a small but amazing group of friends who support me and I’m eternally grateful for them 😊🖤
Now, respite comes in many forms, it could be just a couple of hours per week to get a breather and to indulge in some free time or a hobby right up to getting a whole week, fortnight or months break from your caring responsibilities. I’m lucky regarding short, hourly breaks, I can go to the shop near my flat every day to get a little exercise and I get a couple of hours every Saturday “off” when Dave’s younger brother comes and spends time with him.
I like to do things like go to galleries, museums and going on walks around nature reserves and beautiful places. My biggest issue is a proper respite for several days in a row, to enable me to visit my family and friends and get some proper rest.
The way respite works in my area is that everyone gets a budget to supposedly cover 28 days/4 weeks per year from the council put into an account and you then have to find domiciliary care or care home to suit. All of this by yourself with no help or recommendations from social services, so you have to contact pretty much all facilities and agencies in your area to try and find something suitable.
This is easy if you’re just looking for elderly care, but when you’re looking for complex neurological care for a younger person, it’s difficult to narrow down. Also, you can’t book too far ahead. Most care homes will only know if they have a bed free TWO WEEKS before you go away, you can’t book any further in advance. No beds? Not enough agency staff? No break. I’ve actually had to cancel trips in the past due to not being able to find respite cover.
The next stumbling block is the amount of funding Lancashire County Council provides. It goes up in stages – £1200 for those requiring the least care, £1600 for those with moderate care needs and £1900 for those with the highest care needs. Dave’s care comes under that highest stage.
For domiciliary care with my preferred agency, it’s £19 per hour, meaning for each 24-hour period it costs around £500, 23 hours of that he’s just with a solo carer. This also means that if Dave needs to be moved, say his pee bag leaks and he needs to be cleaned, the carer staying with him would need to call the agency and wait for another member of care staff to come and help as they’re not allowed to manually handle clients solo.
They also have no nursing training so cannot help with toileting (meaning Dave’s bowels don’t get emptied for several days whilst I’m away) or testing if Dave has an infection and have no specialisms in neurological care.
The plus side to domiciliary care is that Dave has someone with him constantly one to one for 24 hours and if you get a good agency like ours, they try and pair you up with carers with similar interests (Dave loves one particular young lad as they sit and watch movies together). We also went through a few horrible agencies before we found this one and Dave was left in a horrific and undignified state by one, but how were we to know without any guidance or recommendations?Thankfully, I discovered the #CQC website and our current agency has been "Outstanding" for years, and well deserve it too. Click To Tweet
Thankfully, I discovered the CQC website and our current agency has been “Outstanding” for years, and well deserve it too.
For care in a facility, Dave needs somewhere with experience in dealing with neurological conditions and also requires nursing care. This means he can’t stay in any old care home, it has to be a specialist one. In our area, we have ONE care home which is suitable, and it costs £2000 per week for respite, and that’s all dependant on whether they have a room free on your chosen week.
The downside to a care home is that he isn’t accompanied all his waking hours, he’ll be left alone most of the time with just a check-in every couple of hours to make sure he’s ok or to feed or bathe him so he’s alone in a strange place. The plus side is that there is always plenty of staff on hand in case he needs moving and they have fully trained nursing staff on-site for complex medical needs.
Back to my mention of cost. As you can see, £1900 does not go very far and gets me on average 5 days a year with my family. That’s it.
We applied for NHS Continuing Health Care which would mean that the NHS picks up some or all of Dave’s care bill when I need respite. We’ve been turned down TWICE as they don’t deem Dave bad enough for NHS funding.
So we’re at the mercy of social services until Dave gets a colostomy, a suprapubic catheter, requires oxygen, has MS-related dementia and is also PEG fed. So basically, when Dave is very close to the end of his life and the last thing I want to do is leave him with strangers.
I’ve been abroad ONCE in my life. I managed a few days in Krakow last year, which was sadly marred by Dave ending up in the hospital due to possible sepsis from a lung infection caused by aspiration. So now even when I do go away, I’m going to be spending the whole time worrying about whether Dave will end up in the hospital again and blaming myself as it doesn’t happen “on my watch”.
The respite issue MUST be addressed. It’s going to take me giving the council 4 weeks’ notice of me leaving Dave for good, risking them forking out £52000 per year for his care for them to actually wake up and help me.
We should not be left to arrange respite completely by ourselves, it’s one of the most stressful things I’ve ever had to deal with and honestly puts me off leaving him as I spend 9 months or so before any trip away panicking and being stressed out. IT SHOULD NOT BE LIKE THAT.
We carers need to be supported more to get the respite we require before we break.
Today’s topic of fun and joy is the lack of official support that I’ve suffered. This is my own experience with the help that’s available, it’s by no means typical of everyone’s situation as councils and regions vary.
When you’re not in a situation like mine, you take life for granted and perhaps think that if the worst happens, you’ll be supported. I mean, there are carers charities, illness-specific charities, social workers, carers groups and organisations in abundance, right? Right, but in my experience, the more support you need, the less you get.
We have a social worker who we’ve met once. She’s only recently been assigned to us after 15 years of not having one. She works only a couple of days per week and is virtually impossible to contact directly. She was supposed to be helping us fight for more respite funding but pretty much disappeared off the face of the earth in January.
I have a yearly Carers Assessment over the phone. My latest point of contact for this has been truly lovely and says all of the right things regarding me in my caring role but can’t help me with anything practical aside from providing a recent supporting letter for my application for a carers scholarship from the Open University.
However, because she doesn’t know us and doesn’t have regular contact with me, I had to write this letter myself and she pretty much just signed it. Plus sides to a Carers Assessment is that I had access to a support worker for 6 months to try and help with my mental health after quitting work. She helped and encouraged me to try new things and get help with my social anxiety.
Through my Carers Assessment, I also get a £300 a year ‘Time For Me’ grant to spend on travel to my parents or something that will be beneficial to just myself, with this years grant I bought a laptop and some online educational courses, so that is of some benefit. I could also access a volunteer “sit-in” service to watch Dave for an hour or so occasionally, but it’s of no use to me currently.
That is pretty much where official carer support ends for me. We have a Carers Centre in Blackpool, but as I do not drive, I can’t get there, and many of their services aren’t usable as I come under a different council.
There are multiple helplines for carers from various charities, but they are of no use to myself as I struggle on the phone and much prefer face to face meetings.
Most carers I know pretty much get left to their own devices and are rarely checked upon. Because most of us just get on with life and manage extremely well, we are forgotten about. If it weren’t for online support groups on platforms such as Facebook, I genuinely don’t think I could do what I do. The camaraderie between carers and those with a chronic illness is incomparable and to know I can speak with people who I consider friends with a click of a button is priceless.
I’d love to see more done to support those who are carers, especially those who care 24/7 for those with complex and hugely life-altering and limiting medical issues. I have noticed from attending various Carers events that there is a lot of work and services for young carers (and rightly so) but not much for us adults. We’re just expected to crack on and do what we do out of love.
That’s all well and good, but we need support too. Sadly, we’re also not very good at asking for help so we slip through the cracks. If we were checked up on regularly by the council and social services, maybe we would not feel so forgotten.
Part two to follow:
- Healthline top Multiple Sclerosis blogs 2020.
- What can tip you over the edge
- Carers Week 2020 – Jen’s Story – Part 2