1.) Can you tell us a bit about yourself and who you support?

I’m a carer for my father-in-law, Peter.* I’ve been doing the caring role for 3 years now since he became housebound. I share this responsibility with my husband.

*Name changed for anonymity 

2.) What kind of things do you do to support them?

Between my husband and I we go to his house regularly to cook, clean, bathe him, cut his hair and nails. He has diabetes too so in reality there should a specialist nurse to cut his nails but my husband has resorted to having to do this himself as he is in agony otherwise. We cut the grass in the huge garden. This is an exhausting task on top of the cooking I do once I arrive at his house.

I sort the cupboards, rotate the food, bring forward in cupboards, fridge items so Peter can reach items easier if needed. I also rotate food in the fridge freezer so making it easier for Peter to access the food. Buying items that require minimal effort in cooking, heating, opening bottles, for mouthwash etc. He has very unstable and unsteady hands, fingers so everything has to be thought out. I make him enough meals, cooked meats and potatoes for the week so at least he has fresh meals before moving onto frozen meals.

We also do his laundry, hang outside if possible and put away into wardrobe. Change bedding. It has quickly become a full-time unpaid job on top of our own paid full-time jobs as well as caring for our young autistic child.

3.) What has caring been like for you? What impact has being a carer had on your life?

It is often so fraught that we have very little time for ourselves outside of busy caring duties. We have to plan a week in advance when I can do the food shopping so my husband can look after our autistic child, I shop alone so I can focus fully on what needs to bought. The distance is about 17 miles between us so we cannot forget an item. I feel responsible for his well-being and I would hate to forget an item. I pride myself on getting things right first time otherwise I get upset and feel angry with myself. The pressure would mount up for next time I go shopping then. I find it difficult to enjoy my time as I feel guilty and should be doing more to help.

Recently he dropped his mobile phone and since we bought a new phone for him, Peter hasn’t got to grips with the new phone. It’s a struggle and with the daily calls to check on him, it quickly becomes tiring for us all. We try our best but it feels like we are never good enough. We make choices like buy the phone based on his basic needs. Ideally, we would take him shopping, he can’t walk outside. It’s like a never-ending battle.

4.) Have you always considered yourself to be a carer?

I realised it once he was discharged from hospital 3 years ago. We always visited him but since that point we started doing all the house chores, food shopping and other everyday items. Storing away food in my house before loading the car again ready to be off loaded again at his house. Its heavy. Tiring, time consuming. I’m always thinking of things I need to buy. Often going out of my way to source items so he doesn’t go without. He is very particular and only wants specific brands.

5.) What would make caring easier for you?

I believe recognising that it’s a full-time responsibility, shared roles at home. That is difficult because I work part time and husband is full time. Naturally the shopping comes to me as I’m good at it. I want the workplace to understand my caring role too. I have a carers passport in place. This is good but the expectation is still there to do the job no matter what my personal life is like. It’s a constant battle, pressure on meeting everybody’s deadlines.

6.) What would you say to someone who helps a friend or family member but doesn’t see themselves as a carer?

“Take care of yourself. Go easy on yourself. You’re doing your best. Seek help if you need it. You will burn out and feel resentment otherwise.”

7.) Is there anything else you’d like to add?

I believe there is help available but you have to really chase up. I found out about carers assessment for me as a carer. Through that I was able to find the department who could re-visit his house and assess what adaptations could be made to the house to help him live a more comfortable life, such as bathroom adaptations, handles around the house, inside and outside, a stairlift maybe. I believe he is now on a waiting list which is a huge positive to us all.

Otherwise, we get the calls from Peter about how he’s struggling and we feel so helpless. It’s very important that we are seen by the local council so that they are aware we are ordinary people navigating a very complex and difficult system. The administration for anything to happen takes a huge toll, the long wait, the admin time is immense on my mental health. I have to clear my diary, have quiet time, my child in school before I can tackle any admin. I’ve had to train my brain to not get bogged down, I’m only human and I can only do my best.