Hi I’m Sharon. I have 3 kids who are under 5, and I care for my Mum who has been diagnosed with Lupus, an auto immune disorder which means that her body over fights, on top of this she has rheumatoid arthritis. I have been caring for her for 5 years.
For a year after her diagnosis she lived on her own but then she moved in with us. We were living in a small two bedroom house so we found a new one with four bedrooms to make room for her.
It has been hard at times, I can’t even remember what I drew on to get through. I had no choice, as I am the only child. It is hard but we always get there in the end. My husband hates the fact that I care for my Mum, which makes living together really stressful, because you know she’s my mum but they do not get along, they really grate each other up the wrong way. What we do for ourselves is to make sure our direct family takes good holidays and we make sure that we go for a good couple nights to have breaks.
Having her live with us has benefits as well because she can spend time with the kids. Her mobility is hard but I find the hardest moments are when she has lots of appointments, because for me that means lots of driving around.
It was unexpected how hard this whole journey was going to be especially with three kids and a baby. The amount of running around took me by surprise. Physio-therapy, GPs, taking the kids with me everywhere. I mean some days I am even amazed at how I can look after 3 kids let alone my mum.
We have decided to move house again! We are looking forward to moving to the country. We have found a completely wheel chair accessible house! We were lucky to find a house that was completely equipped with all the rails. We had received some stuff from domiciliary care but unfortunately none of the fixtures they supplied fitted into our home. And a walking frame with baby gates just don’t work.
There seemed to be a complete lack of houses like this on the rental market, even if you have to buy a house you have to be quite lucky. Finding houses that can even fit a wheel chair down the hall is important. Because she is not yet the pension age, she could not get in home services. This was because we were too far away from the hospital and this is what made the running around all the harder.
To look after myself I got myself an adult colouring book and I take time to sit down. Once a week we do something that is just family, so we can have a sense of ‘normal’. We leave mum during these times with a list of phone numbers on the fridge for her to call. We also organise people to drop in for coffee, and they come and visit. It is good for her to have her own space too.
We still get mum volunteering, at the local church, however she needs roles that she can do sitting. We still give her sitting down jobs for housework like folding and washing. She has always been very house proud and this helps her to stay in control.