When do you think your role as my carer really began?
I think it was around the time I noticed you were struggling with pain and mobility a few years ago as it was becoming clear that you needed a hand with certain things, even if these were small things that I could do that would make a big difference to you.
How do you feel like you manage your workload working a full-time job and looking after me too?
I think generally I have got quite good at doing both of them successfully. I'm able to work effectively in my job and help and care for you around this and when I'm home. For the times when I'm in work, I will plan ahead to anticipate what you might need during the day to prepare this for you, such as making sure your meds are available and anything you need is easily accessible for you.
What does looking after me involve from your perspective?
Sometimes it's hard to separate what would come under 'carer' activities and what is just the things anyone would do for their partner. Some of the things are small things like I've already mentioned such as making sure your meds/food/drinks are prepared, along with ensuring you remember to take your meds at the correct times. I also need to give you a hand or be available when you get a shower/bath due to the risk of you fainting being a lot higher. The other main activity I would say comes under a carer is helping you get around when we go out somewhere, whether this is supporting you when needed if you are walking or pushing you if you need to go in your wheelchair.
Is there anything you've learned from being a carer?
Being a carer will be different for each person doing it and the person that they are caring for and some of the things that you help them with are often not a huge task. Many of the things are a straightforward and easy task for someone such as myself who is not disabled, but they can make a huge difference for those receiving your care. These small things that you do can have a real impact on the persons quality of life and help ensure they are able to do things that they would not necessarily have been able to otherwise.
Has it changed our relationship since you've been my carer as well as my partner?
I think because were have always been very close and enjoyed spending time with each other, along with always being very good friends from the get-go, I don't feel like things have changed drastically. As your conditions have developed over time it has been more a case of adapting as we go rather than things changing overnight. We are still able to do the things we enjoy, some of these have just been adapted. I would say that we have become a lot stronger over the years as a result of me being your carer and you going through a lot.
Do you wish you were able to pay for someone else to come in and be my carer?
In one way it would be great if you were able to have more care if you needed it and able to be taken out if you needed to. But on the other hand, we seem to have a good way of managing it and organising things at the moment but obviously, things may change in the future when there may be more of a need to have someone else come in and help you.
What are the negatives of being a carer?
I think sometimes people see me as your carer first rather than your partner and just immediately think that I must only be your carer and that's it. I have noticed that you sometimes see people judging the situation without knowing anything about it.
Do you think carers are acknowledged enough by the government?
I think it's hard that a lot of carers are not recognised and given any financial support by the government that would make helping and caring some someone a bit easier and could help to provide things that would improve the quality of life for the person they are caring for, such as certain adaptions.
Do you regret not having a more private relationship between us, since there is absolutely no privacy between us now?
As we've always been open with each other about everything I don't feel like it has changed that much and it really doesn't bother me. I know that I help you with certain things now and know a lot of information about your medical conditions, but I'd rather have it this way as it means I can support you more effectively. I'd also there be less privacy and be able to help you with anything you might need rather than keep certain things private and then you have to struggle on your own.
What is frustrating for you being a carer?
It's annoying how difficult it can sometimes be for me to get carer access to places when we visit. We've had to purchase a few different cards to 'prove' that you are disabled and that I'm a carer in order to allow me to get into a venue as your carer. Some venues, such as concert venues, don't make it easy if you need accessible tickets. I remember when trying to get tickets for a concert, I just had to ring up the general booking line even though there were only specific seating that we were able to get tickets for. Other venues have their own dedicated accessible booking lines which are much better so I know it can work - I just feel not all venues are considerate enough for those who have additional needs.
From experiences pre-covid, when going on days out, what have you witnessed that has shocked you?
One of the things I have noticed is the number of people that stare at your when you need to use a mobility aid, especially when you are in your wheelchair. I understand that younger children may stare as they are not used to seeing people in wheelchairs so they may just be curious, however, for anyone else, there is no excuse to stare. I understand you may glance over but people I have seen look at your for a considerable amount of time.
What is it like having to speak for me sometimes?
I don't mind ever having to talk for you as I know it can be difficult for you sometimes. I've seen it a number of times when you have been trying to explain something for yourself and people don't take you seriously and I'm more than happy to speak up and advocate for you to reinforce what you are saying, such as needing considerations for something we are doing.
Do you feel like you've become a disability advocate yourself?
Definitely. I have noticed that I became much more aware of things and feel I will take more things into account realising how it could affect disabled people. I think that my mindset has changed and I will always try and look at things considering how they could impact disabled people. This could include access to places, adaptions needed or even whether the red emergency cord in a disabled toilet it correctly all the way to the floor.
What is one thing you wish people would know about disabilities and chronic illnesses?
Each person's experience and situation with having a disability or chronic illness is different and their needs will vary. Just because one person with the same or similar condition(s) is able to do something does not mean that someone else will be able to so you should never assume anything about someone who is disabled or chronically ill.
Have you ever witnessed medical gaslighting with me in my appointments?
Unfortunately yes, and on more than one occasion. When you weren't able to see your regular GP, you had one appointment where the other GP downplayed the symptoms you were explaining to them. They even turned to me and started responding to me even though you were the one who was speaking with them. I know for some of your conditions that you experienced gaslighting on more than one occasion and it took multiple appointments for you to be taken seriously, which meant you weren't able to access the help you needed to control things such as your pain you were experiencing.
What are some misconceptions about caring for a partner that you'd like to address?
One of the things about caring for a partner isn't about doing things for them all day every day. Sometimes, just helping them with simple things can be really helpful for them, such as taking their medication or helping them get to the loo if they are physically struggling one day. Something else is that it's not a burden to help care for you. Everyone needs help sometimes, so helping someone you love and care for should not be seen as a negative thing.
Are there any misconceptions that you yourself have learned about that you once thought were true?
I didn't previously realise the realities of ambulatory wheelchair users. I knew that just because someone used a wheelchair, this didn't mean that they couldn't walk at all, however, I'm now much more aware of the reasons people use a wheelchair and this can vary day to day and even within the same day. People may be able to walk for so long and reach a point where they then need to use a wheelchair. I also thought that accessing support for help and financial support was much easier than it is, and now realise that getting access to things such as a blue badge, never mind financial support is a lot harder than it should be.
What advice would you give people in the same situation as us, with one partner caring part/full-time for the other partner?
Obviously, things will be different for every couple depending on your own situation, but there are some things I think would be applicable to a lot of people. Taking the time to plan ahead and prepare can really help. This could be for if you are going away on holiday, or even for the next day when you will be out at work. Things such as the Sociability app are useful to download as they collate a whole host of accessibility information in one place. I'd also reassure you that it's worth sticking to your guns when it comes to things and don't be afraid to speak up for your partner. Be firm but kind and don't let anyone gaslight or downplay your partners needs as you and your partner know best.
What are your hopes for the future regarding my care and our situation?
I'd prefer to be able to work from home in the future in whatever work I'm doing as it would make it easier to help out when I was on a break from work or on the off chance you took a turn for the worst I'd be able to help straight away. I know it's something we are currently working towards, but I hope we are able to get a blue badge to make it more accessible and safer when parking. It would be a help if you were able to get some financial support, even a small amount to help cover the additional costs you experience such as medications and access aids. I know we have also talked about our house situation in the future, and I think if we could either move or extend our house at some point to make it easier for you to get around if we could have a more open-plan space. I know we don't have the funds to do this any time soon but I hope in the future we'd be able to.
