Who Cares for the Carers?

I’ve been a carer since I was 14. This was 30 years ago. Firstly, I was caring for my mother until she passed away in 2009. Back in those days as a young carer there was no support offered to me and as I didn’t have siblings, I just got on with it and took it into my stride, there was no help, no support and even no acknowledgment of me being a carer at such a young age. I went through secondary school, two colleges and onto work and no-one ever asked about my role as a carer for a family member. Theonly person who ever finally acknowledged it was when I was first diagnosed with depression and that was my GP back in the year 2000 and this was partly because they treated my mum, so they knew about her ill health.

 

When my mental health took a downward spiral, I struggled to remain a full-timecarer to my mum as well as hold down a full-time job and eventually I went part-time until I had to leave work and claim sickness benefits, that was in 2007, two years before my mum passed away. I hated not being able to work and I struggled on,working part time for as long as I was able to, but it was a battle in the end I lost. At the time my employer the local council were extremely supportive, I even tried a phased return to work, worked alongside the occupational health team and saw there in-house clinical psychologist. They tried. I tried. I failed. My mental ill health had won.

 

After the death of my mum, I made plans to go back to college to study. I had been making plans for this whilst mum was still alive, knowing she didn’t have long left, I watched her go from an outgoing bubbly person full of life who never let her ill health get her down to someone who gradually faded away before my eyes. When her kidney transplant failed, she ended up back on dialysis, this time haemodialysis something she never wanted, she preferred the freedom of CAPD (Continuous Ambulatory Peritoneal Dialysis) In the months before her death, she was also diagnosed of having a cancerous tumour in one of her own non-working kidneys, they removed this and she needed no follow up treatment. She spent the last six months of her life in hospital in immense pain having been diagnosed with calciphylaxis an extremely rare painful condition for those with kidney failure. In the end the pain was too much for her and she had the capacity to understand what would happen when she stopped her dialysis, and she did. Three days later she died, with me and dad holding her hand in March 2009.

 

Two months after her death I experienced my first inpatient stay in hospital, I spent three weeks on a ward and came out with a diagnosis of EUPD. A diagnosis I disagreed with wholeheartedly for a very long time. Prior to my first inpatientadmission there had been added to my note’s traits of EUPD, I think simply so they could justify throwing me into a detrimental therapy group in 2008 which had a terrible reputation and was aimed at those with a diagnosis of personality disorder.The day before I was discharged from the ward, I left to attend an interview in Manchester for college and I was accepted to commence an Access Course starting in September 2009. Upon discharge from the ward in June 2009, I felt indestructibleand positive about my future. I was encouraged to follow by dreams as an inpatient by a first-year student mental health nurse perhaps the only person I ever talked to in terms of staff during that first inpatient stay.

 

I did start college to complete my course and was accepted at university to do my Mental Health Nursing Degree. College kept me sane, and it gave me something to focus on but between ending college and starting university my mental health declined, I took my first overdose and ending up withdrawing from university the Friday before I was due to start the course much to the surprise of my family and friends. Ironically in the weeks before university was due to start and on one of my many visits to put things into place, I bumped into the student nurse I had met on the ward as an inpatient at university, he was about to start his final year.

 

For the next few years, I tried to focus on my own mental health, partaking in another form of therapy, engaging in voluntary work, and wondering whether I could re-apply for university to try again. I did reapply in 2013 but once again decided mentally I couldn’t commit and withdrew this time the day before I was due to start. I’ve never really spoken about why starting university was troubling and why on two occasions I withdrew my place before starting, but the reality was down to one thing, my weight. Academically I could study to be a mental health nurse, but physically I was very unfit, in chronic pain and knackered and since 50% of the training was placement based, I was terrified I wouldn’t be able to cope with the that side of the course. And I didn’t want to be a failure again.

 

Any thoughts of doing something constructive with my life went out the window when my dad started to struggle with his own ill health. Over the last 7 years I have become a carer again, a role I just seemed to fall into so easily. It has been very difficult this time around because growing up me and my dad didn’t really see eye to eye. I understand now why thanks to a lot a therapy and now we have a better dad and daughter relationship, but one thing always sticks in my mind and that was a conversation I had with my mum about my dad in the months before she died, one that today even feels painful to talk about or even write down.

 

I have watched my dad someone who was rather independent and feisty recede into someone who can barely get out of his chair or stay awake to listen to a conversation, partly due to the amount of pain medication he takes and yet he is still in constant pain. The NHS refuse to do a knee replacement due to his weight, yet when he did get his BMI down to 41 four years ago after a weight loss of 32kg, a referral was still refused. His BMI had to be 40 and under, but surely a referral would have motivated him to continue and by the time the first appointment had come around he was likely to have a BMI of under 40! Dad in immense pain gradually gave up, he was struggling to walk and pushing himself so much he was causing more harm than good to his joints. Imagine bone on bone rubbing not just on one knee but both. And it wasn’t just his knees causing problems, he had major problems in his back after a laminectomy in the early 80’s which was now causing problems due to scar tissue. Imagine being on so many pain meds, Tramadol, Fentanyl Patches, Oramorph and Amitriptyline and you are still in chronic pain every day.

 

What quality of life is that for anyone? And me as his daughter has to see this day in day out and everyday it kills me a little bit more. Dad was never really a protective factor for my mental health, but therapy meant I learned to appreciate him more and now he is a protective factor, he is the reason I keep fighting, the reason why so many overdoses have occurred, and why I have called 999 to ask for help and therefore self-rescued as the mental health team like to call it. However, sometimes my mental health wins and it is a struggle to say he is a protective factor. More recently I have been plagued with dark distressing thoughts. And when my own dad tells me he would be better off dead than be in the pain he is, how do you think that makes me feel. Part of me believes if I end my own life, my dad will take his own life shortly after. I sometimes wonder does he keep going for the sake of me and vice versa.

 

Over the last two years dad has put weight back on, he doesn’t overeat, he doesn’t drink, and he doesn’t smoke but being almost immobile the weight he lost has crept back. This is a man who previously served in the armed forces for seven years, then joined the TA, a man who frequented the gym, jogged daily and was very active. Then the side effects of a previous back operation after an accident at work started to cause him complications. He carried on working in pain until the local council retired him in his 50’s due to ongoing health issues, he was deemed no longer fit enough to drive the HGVs which was what his job entailed. Admittedly he’s a bread and cereal addict but it is clear to me he’s given up on getting a knee replacement and given the NHS waiting lists currently he is unlikely to ever get one now.

 

I have pushed for an NHS referral with his GP this year who initially refused it but when I quoted the NICE Guidelines stating that his BMI should not be a barrier to refusing surgery, the GP did a referral but made it clear no NHS surgeon would operate on dad. It was as usual all talk of dad losing weight, but no-one would acknowledge that dad HAD previously lost sufficient weight for a knee replacement but that he was still refused a referral. In January 2020, I was with dad during a GP appointment and was left reeling with anger when his GP said to him, ‘If you get your BMI back down to 41, I’ll refer you.’ I think it was at this point that dad just gave up and the Covid lockdown meant as an older person he started to shield and didn’t go out with me anymore, so trips to the local shops and supermarket stopped and he limited the time he was out with his dog. Covid has effectively made his situation worse, he’s seized up due to being locked up.

 

This year after a GP referral which I demanded my dad couldn’t even get past a telephone call with a senior physiotherapist let alone speak to a surgeon. The simple answer was no, you can’t have surgery, your BMI is too high. How can anyone judge his mobility and pain via a telephone appointment? Yet the majority of these NHS surgeons also work privately and for £13,000 + they would replace dad’s knee jointin a matter of weeks regardless of his BMI. There is ample evidence available which says a higher BMI does not affect recovery time from surgery and since most knee replacements are done under a spinal anaesthetic there is no real risk there either. No, personally this comes down to the NHS wanting to save money, sod the person in constant pain, sod the fact they have paid tax and national insurance their entire life or that they served in the armed forces for their country for seven years. Who cares about the pain they are in and how it impacts their quality of life? I care, me the carer. Me the daughter. I want to keep fighting for my dad and his knee replacement, but I don’t have the fight in me to argue anymore. It is yet another battle I have lost.

 

More recently due to a decline in my own mental health I noticed a familiar pattern emerging, I was unable to put my own mental health and physical health needs first, my dad in my mind always had to come first. This familiar pattern sticks out a mile especially over the last few years when I have been in a crisis. For being a carer for my dad, the DWP give me a ‘Carers Premium’ of £37.70 per week which is added to my ESA, This amount is hardly anything when you consider what I have to do for him and for several years I was not even aware there was such a thing that could be added to my ESA. To qualify for this, I have to care for dad for more than 35 hours a week and of course I do much more than that. It’s not just about being with him as a carer but about what I do behind the scenes for him, sorting out prescriptions,shopping, taking him to appointments, arranging appointments, his finances, his bills, walking the dog etc. All of which when you are in a mental health crisis is extremely difficult. I struggle at times to deal with my own day to day daily living activities let alone having to take on my dad’s when I am acutely unwell.

 

I hear people scream, but he’s your dad, you should look after him and I agree I should. I am one of those from a generation that believes I should help care for my dad just liked he cared and supported me growing up. However, we are rather isolated, and, in our town, it is just me and him, none of his family even bother to visit him, it’s always been a one-sided affair for as long as I can remember with us going there to visit and in recent years me driving dad to see his sister. Covid has now put a stop to that, and dad’s mobility has got so much worse, he can barely climb into the car or sit in it for more than 10 minutes without being in great discomfort, so there will be no drives an hour away to visit his family anymore. Dad now just speaks to his brother on the phone a few times a week. He could visit dad; he has a car, but he doesn’t.

 

Like many with longstanding mental health issues I have had my fair share of inpatient admissions and I notice a precedent that every time I needed to be in hospital for my own safety it would unnerve me and cause great anxiety about how dad would cope on his own. How would he get his shopping? Who would walk the dog? Who would order and get his prescriptions? Despite me being unwell and often suicidal I still always thought of my dad and what he needed rather than what I needed.

 

I first noticed this when a suicide attempt in 2017 saw me end up in ICU and onwaking up my first thoughts were how is my dad? I decided back then to be admitted as a voluntary patient to a mental health ward. Upon arrival to the ward, Iimmediately asked to discharge myself but was threatened with being sectioned by some junior doctor. No-one understood when I said I was a carer for my dad why I needed to go home and there was no offer of arranging any help for my dad despite him being classed as a vulnerable person. On that occasion I was discharged the next day, but only because I got dad to lie for me and say I would temporarily stay with him whilst I got stronger. I think the homebased treatment team thought I was going to move into the cupboard under the stairs Harry Potter style.

 

The same thing occurred in 2019, I was very unwell and after a conversation with dad I decided to ask to be admitted to a ward to hopefully put a stopper in the tracks of a potential suicide attempt. I had even been shopping that morning stocking dad up on essentials in a major detached state of mind walking around the supermarket. Iwas assessed twice in A&E and eventually I was allocated a bed, but it was 30 miles away at a private hospital. After less than 48 hours as an inpatient the familiar panic set in about how dad would cope without me and after four days, I set about requesting to be discharged minutes after my first ward round whilst still unwell and still feeling suicidal. I wasn’t deemed unwell enough to be sectioned by the consultant psychiatrist thankfully. Again, I opted to put someone else’s needs before my own.

 

Then in 2020 the same pattern occurred when I was sectioned something I never expected to happen to me and I was sent out of area in the middle of the Covid lockdown, same mental health trust but a different town. I worried even more how dad was going to cope especially since he was shielding but not on government advice, so he was not entitled to a priority shopping delivery slot or help from the council Covid support team. Most of his elderly neighbours were shielding as well so there was literally no-one, I could ask for help. After four days I pretended all was ok, I was no longer at risk and I wanted to be discharged, the consultant psychiatrist agreed to this. I was far from well, but I would have said anything just to get home and check on my dad and his welfare.

 

Throughout 2020 I was under the homebased treatment team on and off, but no-one questioned my role as a carer or asked did I need any additional support. Eventually I became more stable and back to what I call my baseline, the one where I sleep ok, my anxiety is much better, and I don’t feel as depressed, and I function well but it neverseems to last much longer than a couple of months.

 

At the end of 2020 and the beginning of 2021, I started to notice the all too familiar signs I was depressed and gradually as the weeks passed, I became more unwell with that all too familiar feeling of wanting to die because I couldn’t go through this yet again. And then like lots of other people I was added to the new government shielding list in February 2021. This changed nothing for me, but I was inundated suddenly with emails from supermarkets and even the local council telling me I had been identified as a vulnerable person who was shielding and therefore now entitled to priority shopping slots and help from the local council.

 

This time the depression ate away at me, normally I am quite high functioning when depressed and just get on with things but this time, it really took it out of me, not only was I depressed, anxious and suicidal I was in chronic physical pain which had been getting progressively worse for the last 18 months. I avoided prescription painkillers because the risk of me overdosing was too high. I gave up trying to maintain my own home and this was so unlike me. When I wasn’t at dad’s or doing things for dad, I was sleeping, I was so exhausted.

 

It was becoming a struggle for me to even climb into my bath to take a shower due to my chronic pain and even to get in and out the car to get to visit dad. This time it took me 9 weeks before I approached my GP to ask for help someone who has been incredibly supportive in terms of my mental health and very vocal when trying to access me mental health care especially in a crisis. This time around my GP did two urgent referrals to the assessment service. The March one was rejected, and a letter sent back asking that my GP prescribe two different medications for me, both of which I had been on before which didn’t work. They refused to see me because I was deemed well five months earlier during a telephone assessment. A lot can change in five months. The second urgent referral was downgraded to routine but then as if by magic I had an appointment to be seen at the end of May, but by then I was truly in the grip of a serious depressive episode, and nothing really came from the appointment other than a psychiatrist handing a suicidal person six weeks of two different lots of medication. Sadly, I ended up taking three overdoses in June. After two of them I was placed under the homebased treatment team but that didn’t stop me taking a third a few weeks later.

 

I tried to explain how much I struggled with my caring role when I was unwell with those from the mental health team, but I felt no-one really understood how this was having an impact on me both mentally and physically. At times during visits some staff would ask ‘Had I been to dad’s’ and I would reply, ‘Yes, as I do every day.’ The more they asked this the more annoying it become. I got the distinct impression from some people because I could get dressed and go out to care for my dad for a few hours each day, I wasn’t really depressed, and therefore was not worthy of accessing home based treatment. But as anyone with mental health issues understands, depression doesn’t have a look and sometimes despite how unwell you are you don’t have a choice; you have to do what needs to be done. And I didn’t have a choice. There was no-one else I could ask for help from.

 

I then contacted social services off my own back and found out as a carer I was entitled to have a carers assessment, in all my time under mental health services whether as an inpatient or under the homebased treatment team I never knew such a thing existed. A few days later a social worker came to my home, she was so understanding and helpful. She was surprised I was not under secondary mental health services i.e., not under the CMHT or why I didn’t have access to a CPN, or CCespecially given the last few years. I shrugged it off and said I believe it was because I disagreed with my diagnosis and questioned things such as staff opinions in my notes. I admitted that I felt I was being blocked from accessing the services I neededfor being too opinionated and awkward.

 

The social worker was with me for quite a while and started the ball rolling to get dad a needs assessment and told me I was entitled to have a carers assessment review yearly. I also learnt I was entitled to qualify for a carers grant, a one-off yearly payment of £150 paid by the local council. The social worker completed the paperwork for me, and this was paid a few weeks later. I also contacted Independent Living Services to try and get dad some additional aids to help him around the home. This especially irritated the Occupational Therapist who had visited dad in January and approved a Disability Facilities Grant for a wet room to be installed. She clearly didn’t like my second request and was insistent she had done a thorough assessment of my dad’s needs in January. I disagreed with her and pointed out that back then I had asked for a different kind of walking aid for dad, and she hadn’t even touched upon the issue during her short visit. She has since been back out and dad has some new aids to help him around the home as well as a new 4-wheeled walker to use when going out. And finally, things are moving on his bathroom adaption after a 7 month wait from when the disability facilities grant was approved. I am hoping this much needed adaption will be completed by October.

 

Back in March I contacted my local carers support group, I was aware this existed, but I hadn’t reached out to them before, but I felt so very alone and isolated being a carer, especially a carer who was struggling with her own mental and physical health needs. They were a source of real help and I started to receive weekly telephone calls from the same person to see how I was doing which helped me build up a rapport with them. Turned out they had previously worked within mental health services so were very understanding of my needs. There weekly check-in telephone calls have been of great benefit to me of late and I never feel judged when I am talking to them. In time I might even try and engage in some of the groups on offer with them, but for now it is baby steps.

 

It felt like a mind field in the beginning approaching social services about getting additional help for myself and dad, I really didn’t know where to start. Now I feel more informed on what help is available and shortly dad will have his needs assessment. A helpful woman I spoke to on the phone gave me a short run down on the kind of things available for him, such as personal budgets so my dad can choose his own personal assistant to help with things, he needs which his needs assessment should identify. I didn’t know such a thing existed and I feel let down that no-one ever identified me as being a carer who was struggling and needed help. What can’t be done it seems is for dad to have a care plan in place so if I get too unwell, he can call upon that so the council can put temporary support in place for him to give me some respite to focus on my mental health. It seems it is an all or nothing situation.

 

So as a final piece of advice if you are a carer who is struggling especially with your own mental health, seek help. It doesn’t matter who you care for, or for how long each week you do it. Ask social services for help and advice, your local council have a duty of care to both you and the person you care for. Have a look to see if there are any support groups in your area you can approach for advice. Don’t be afraid to ask for help.

 

Written by Alison L (@moosealimar) Greater Manchester.

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