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, please join me for part 2 of Jen’s story
Ok. Today’s post is an emotive one for me as its been a very difficult part of my caring role – keeping my mental health issues in check with my caring role.
I will get quite personal in this, going through my own experience so please do not read on if candid and honest stories of mental health issues are triggering.
I have struggled with various mental health problems for a very long time, stemming back to childhood but these became more apparent as I got into my teens.
When Dave and I met in 2005, I was in a hellishly toxic and emotionally abusive relationship and had been since age 16. I was abusing alcohol and recreational drugs and was self-harming to the point of hospital admission just to escape. Dave made me realise that I deserved to be alive and saved me from that situation.
In the beginning, things were amazing. Obviously, we had Dave’s PPMS taking hold, but I felt free and we were planning our new life together, moving away from Manchester and starting afresh. His care needs were minimal, mostly personal care like bathing and shaving and food prep for when I was out of the house.
He was permanently using a manual wheelchair at this point but was fit and strong and very independent. I was working full time and got a promotion at work to Assistant Manager and was studying for my Retail Management NVQs. We moved to a lovely big house with a huge garden and adopted a gorgeous German Shepherd called Bailey and we married in 2008 – our family was complete, and things were great.
Then things started to unravel.
In mid-2010, we sadly had to leave our rented home and our beloved Bailey was rehomed. This broke my heart as all I had dreamed of was having a happy home with a dog as I never wanted children. This dream was torn away and we eventually moved into a social housing flat which did not allow dogs. As Dave desperately needed a wetroom, we had no choice. His MS worsened, ultimately resulting in me quitting altogether in 2015 when he became confined to bed and virtually quadriplegic.
My mental health started to go awry again. The feelings I had with my ex of being trapped started to come back and I started to resent Dave.
I was unable to go back to Manchester to see my friends as much as before and I felt incredibly lonely and lost. My drinking got worse, I began to self-harm again, I developed social anxiety and my disordered eating came back. I was nasty and verbally aggressive and hated myself and my life.
Luckily for Dave, I sought out help and started on stronger antidepressants, had a course of Cognitive Behavioural Therapy and started having fortnightly aromatherapy massage and relaxation training, all prescribed by the NHS.
This alongside symbolically separating from Dave and help from my Carers Assessment support worker aided me in calming myself and controlling my damaging urges. Within a couple of years, I was back on an even keel and off my meds. Sadly, whilst I was fixing my old issues, an insidious new mental illness was forming – health anxiety.
I started to become obsessed with Dave’s health, checking his temperature, heart rate, urine and blood pressure regularly and panicking over the slightest little change all because Dave got a UTI once and got VERY poorly.
I felt as though it was my fault, that I’d missed a sign of infection. I now have a ridiculous amount of diagnostic equipment and I can take and interpret readings so well the GP thought I had a nursing background. I am also obsessed with my own ailments.
After an A&E scare with palpitations, I am convinced I am going to have a heart attack all the time to the point I have an emergency bag ready and all Dave’s care information out all the time, just in case. It gets so bad; I even worry about going to my parents as they live so far from a hospital.
All because I worry about Dave’s care if I get sick. I created coping mechanisms for myself to try and focus my mind away from health stuff such as learning new hobbies, going for a walk to the shops every day, having Saturdays off from my caring duties, visiting local friends and even getting the odd night out to blow off steam.
The pandemic has taken all these coping mechanisms away. Due to Daves swallowing and respiratory issues and clinical frailty, we have to “shield” indefinitely meaning no leaving the flat or encountering other people.
Considering my means of coping with being a carer mostly involved seeing others and leaving the flat, this has taken its toll. I have had some incredibly dark days during this past 13 weeks.
Depression came back along with very dark thoughts which I never thought I would have again, and I have generally not been a nice person to live with. I am terrified of Dave dying of Covid, I am incredibly worried about me getting sick and being unable to take care of him and I generally do not feel safe outside the bubble of my flat and scared of being near other people.
The burden of protecting Dave from this virus which would probably kill him is so incredibly heavy. To singlehandedly be responsible for a life is something which plays on my mind every single day and a simple task like going to the bin outside makes me panic for days afterwards just in case I picked up the virus in the communal areas of my block of flats.
I bleach contact points daily and deep clean 3 times a week. I bleach or disinfect everything that comes into my flat and every time I leave my front door and come back in, I have to shower and hot wash my clothes. I’m even too scared to get my pet rats out on the days I haven’t deep cleaned, just in case they pick up something from the floor and pass it on to me. It is a catch 22 – I need to leave the flat and socialise to ease some mental health issues, but in turn, leaving the flat exacerbates others like my health anxiety.
There was a fortnight where every day was consumed with thoughts that I didn’t want to be here anymore as the responsibility was just too great and I just didn’t feel strong enough to protect Dave from the virus. The only thought that stopped me stocking up on my Bisoprolol and gin was “How will Dave raise the alarm if you die?” I’m currently doing ok, still struggling with some things and genuinely do not know if I’ll ever feel comfortable with anyone coming near Dave again, but I’m focussing on plans for redecorating my home and working on my education but I know I’m going to have a lot of work to do before life can get back to “normal” if it ever does.
I do however have it comparatively easy compared to some other carers during the pandemic. Many who rely on care packages have had their hours cut and, in some cases, due to shielding, they have had to stop care visits altogether, leaving them to try and manage their loved one’s care needs by themselves.
We have no care package so life has not changed for us at all in that respect. People have had social clubs stopped and things like MS centres closed, their only source of companionship and support. Carers do their job 24/7, 365 days a year – we cannot switch off and separate work from home after a shift, we don’t get days off during the week and we don’t get holidays from work to look forward to – the people we care for ARE our job and its relentless.
We don’t do what we do just “out of love” – most of the time it’s because we have NO CHOICE. This pandemic has compounded that further as we’re trapped with our loved ones constantly.
The mental health crisis for carers is going to be even bigger due to coronavirus as those who were already hanging by a thread have had respite, coping mechanisms and support services cut. I just hope that carers are recognised as vulnerable to this and get extra appropriate support and help as life begins to return to “normal”.
BENEFITS AND MONEY
Today, I’d like to talk about money worries as a carer.
In my personal position as a carer, I feel privileged. Aside from having to declare myself bankrupt due to bad financial choices made during bad mental health periods, we’ve managed ok with money.
Dave thankfully saved into a workplace pension for a couple of years before being made medically retired at age 30. Because he was employed by Barclays, they have looked after him well, making sure he has a helpful amount of pension per month. He also gets enhanced rates for both components of PIP and he claims Contribution Based ESA.
When I quit work, I started claiming a small amount of Housing Benefit and Council Tax Benefit and I also claim Carers Allowance. All this combined enabled me to quit work and we manage to afford essential bills and shopping plus the odd luxury every now and again.
Sadly, it’s not so easy for many, many others.
Not all with disabilities are entitled to enhanced rates of PIP, namely those with mental health issues or learning difficulties. Since DLA changed to PIP and the assessment process changed, it’s become much more difficult to get the disability benefits they so desperately need.
We also have the abomination that is Universal Credit, which is confusing and frustrating and not fit for purpose. Most are left worse off on it and its plunged so many people into hardship. We have yet to switch to UC – our housing benefit is still paid from the council. I will admit that I am not looking forward to the changeover as you get left for weeks with no benefit and no back pay from the date of application like other benefits.
Thankfully, we do not receive much HB due to it being means-tested and Daves pension pushes us out of most means-tested benefits.
Then you have Carers Allowance. This benefit was introduced back in 1976 to be made payable to carers of sick and disabled people. Quoting from the House of Commons library;
“Carers Allowance is, formally, and “income replacement” benefit. It is intended to provide a measure of income-maintenance for people unable to do full time paid work because of their caring responsibilities. It is not a payment for care provided or a “carers wage”
“To be entitled to Carers Allowance, a person must be providing at least 35 hours of care a week for someone in receipt of a qualifying disability benefit, not be in full-time education and, if in paid work, have earnings after certain deductions of no more than £123 per week”
There are MANY issues with Carers Allowance. The fact that those of pension age cannot claim it yet still perform their caring duties is just baffling.
You do not stop caring just because you reach a certain age! Many older folks can be caring for their partner AND possibly ailing children and yet receive no financial recompense for that.
There is the issue of not being able to earn over a certain amount whilst caring. The minimum amount is generally lower than a typical 16 hour per week part-time contract which is a stumbling block to find employment which can accommodate your minimum hours, and also the fact you cannot earn any more means that you are tied to only doing set hours every single week.
Now, I have worked in retail management, I know exactly how difficult it can be to sort out shop hours when you have people who cannot ever work any extra. I’ve applied for a couple of part-time jobs since quitting work and never even got to interview stage and I’m 100% sure it’s down to my honesty on the application forms stating I was a carer and couldn’t ever work more than maybe 12 hours per week, meaning I couldn’t cover holidays or sickness.
The issue of not being able to study full time and claim carers allowance is one that I never realised until recently. I have applied for an Open University Scholarship meaning they will pay for an Honours degree course for me if I win it.
I was all set for knuckling down and doing 3 years of study to take me closer to my goal of becoming a counsellor or support worker. Upon doing some research into this, I discovered that full-time study is not allowed, and I would have to do the course part-time over 6 years. This was a blow as I would need to undertake further study after this degree to follow my dream, and this would push me back by 3 years.
I have A LOT of free time at home as, during the day, as Dave does not need much help, just someone here in case of emergencies, perform his lung physio or to feed him lunch and drinks so, in my situation, there’s no reason why I shouldn’t be able to study full time AND still care for Dave for 35 hours per week.
By far the biggest bone of contention for carers is the amount of Carers Allowance paid. Most of us do not work alongside claiming CA and in my case due to HB and CT benefits being means-tested, I do not claim a lot, probably around £120 per month. When I quit work finally, I had gone from a wage of almost £1000 per month to £277, essentially swapping £8 an hour for £1.80. The government state that CA is not meant to be a wage but an “income replacement” benefit. How the hell is that replacing anywhere close to a salary? Why state we must care for 35 hours minimum if they’re not going to compensate us for those 35 hours?
CA is also much lower than any other “income replacement” benefit like JSA for example. When you consider that to employ a carer, it would cost between around £9 per hour for a private carer and £19 an hour for agency staff, CA looks like a pittance. As I have said earlier, I am in a lucky position to not need many benefits as Dave’s income covers most of our living expenses, but, so many are not in a fortunate position like mine. We keep having the fact that we do what we do out of love thrown back as us when we question MPs etc – love doesn’t pay the bills or respite care fees.
Sadly, I do not think we will ever see CA paid in line with any type of wage. When disability benefits are being constantly slashed and council budgets for social care cut to catastrophic levels, I genuinely cannot see any significant changes being made, which is a travesty and an insult to carers everywhere. We do not choose to live on handouts, far from it.
I’d give anything to still work. Earning my own money, being financially independent, having a sense of pride in what I did and engaging socially with others through work are all things sadly missed and my council just cannot provide a care package enough to allow me to work. I want stability and security and being an unpaid carer just does not give you that.
The future was never something I thought about until it seemed too late.
I always thought that I would have longer to have a life, to travel, to have a career, all with Dave beside me in his wheelchair. How wrong was I? MS is such an unpredictable illness and I genuinely did not appreciate just how aggressive Dave’s MS was until we had to move into specialist housing, and I had to quit work as the council could only offer me a couple of hours a day care package.
After just 10 years of diagnosis, MS had seemingly won. Suddenly, my whole entire life revolved around caring for Dave.
With Advanced MS being chronic rather than terminal, there is no “end point”, we have just got to crack on and see his life through, however long he may have left.
This also means that I am going to have a hefty gap in my employment history and nothing to show for it – no qualifications or references from anyone to refer to for my time being a carer.
I did investigate NVQs, but these require you to be employed and have a place of work to be assessed in. I have A LOT of free time on my hands in the flat with Dave so I had toyed with the idea of doing an online educational course from the Open University for a few years, but my low self-esteem always got the better of me and talked me out of it.
Then I found out about a brand-new Carers Scholarship initiative from them meaning a free degree course to those who get chosen. I enjoy supporting people, so I decided to bite the bullet and if I win, I will be doing an honours degree in Psychology with Counselling. This will enable me to take the first step into gaining qualifications to become a counsellor. I’d love to help the carer community and do support work or offer counselling to carers so I have now got everything crossed that I win the scholarship!
I’d love for the government to recognise that carers need some kind of stability and hope for the future and offer some form of officially recognised training or educational courses to carers, especially younger folks like myself who won’t have that role forever, to help give them something to strive for and to help with reintegrating back into society after their caring role ends.
Having something official on paper will also aid in gaining employment after caring finishes. We have zero savings due to our financial situation, and we do not own our own home so once Daves has gone, I’ll have pretty much nothing. If I have a degree, at least it will show that I’ve been trying to educate myself along with all the other skills studying brings, and it will open more doors to different types of employment, meaning I hope to find a job quickly.
I am even hoping to learn to drive next year to enable me to get out and help people in my chosen career and carry on my education. I managed my first ever trip abroad last year, to Krakow in Poland, and got well and truly bitten by the travel bug. I now want to travel all over northern Europe so I NEED to be earning!
Dave and I talk about “The End” a lot. We are both very matter of fact about death and we know he will not live a long life. Being the carer of someone with a life-limiting illness can be bittersweet. You worry about what’s going to happen as you know full well what’s coming, but you try and just get on with each day as it comes and be grateful for each day the person we care for is happy and comfortable.
Yes, the future being unpredictable is scary, but I am thankful for the close support I have in my life and I know I’ll be ok. I’ve also learned that it’s OK to want better for yourself and to take opportunities to help give yourself a little piece of something for YOU.
I hope my posts this week have informed those who are not carers. I know some aspects can be uncomfortable to read, but I am just a tiny drop in an ocean of unpaid carers in the UK, most with more difficult stories than mine. I hope that those who are carers have found solace and solidarity in my story. YOU ARE NOT ALONE. I also hope for a future where carers are recognised, respected and given as much support as they need in the form of respite, an increase in Carers Allowance and proper mental health support. Carers charities must do more and must be more vocal and forceful around issues and not just exist to fill a gap in the charity market.
WE MUST BE VISIBLE.
WE MUST HAVE HOPE.
For everyone who’s commented, messaged and shared their story with ME this week – thank you, from the bottom of my heart. It means the WORLD 🖤
Jen is the owner of the Facebook Group Fighting the MonSter – Life with Multiple Sclerosis which you can join here.
I personally want to thank Jen for allowing me to share her incredibly honest story with you all and I truly hope one-day Carers are recognised for all of the work they do and they get the support they so desperately need.
In the meantime you can still send a letter to your local 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.by using using this link.
- Healthline top Multiple Sclerosis blogs 2020.
- What can tip you over the edge
- Carers Week 2020 – Jen’s Story – Part 2