By Christina Maisey on January 7th, 2019
For my first post I wanted to write about something that will affect anyone who is helping to care for a loved one. There are important relationships that we all have, parent and child, husband and wife, siblings, and if something happens like ill health, the dynamic of those relationships will change. The effect that caring for my mum had on my relationship with her is one of the reasons why I decided to set up Annie’s Care Advisory Service.
I always had a good relationship with Mum, although we did have our moments, like any mother-daughter relationship. Mum was diagnosed with Multiple Sclerosis (MS) when she was 57. She managed her condition very well and she was determined it wasn’t going to stop her living her life. Over the following 12 years her health deteriorated, but she still managed to maintain her independence, arranging all her own care needs and not really talking to me or my siblings about what was going on.
However, in the spring of 2013, she had to be hospitalised with an infection, and this was when I began to realise that she hadn’t been coping very well at home for a while. I decided to step in and help her, which is when our relationship began to change. The level of help that she needed increased quite quickly. She began to lean on me more and more to help her on a day to day basis, organising her finances, her care plan, food shopping etc. I lived 100 miles away from Mum, so most of this had to be achieved over the telephone, regular visits and with help from two of Mum’s close friends. We made it work, but my visits became more about what needed doing rather than spending quality time with Mum.
The dynamic in our relationship was changing. I was beginning to feel more like the parent and Mum was becoming the child, in need of my help and support both emotionally and practically. We did have meals out and days out with her, but gradually as Mum’s health deteriorated, that happened less. Our conversations became more about her care needs than the usual mother daughter chat. We did still joke about things and have some quality time but it was limited. Mum would get frustrated at our lack of time together when I visited, she would say ’come and sit down a minute’ or ‘what are you doing now?’. She didn’t understand that all that running around was helping her to stay living at home independently. It was tough and I did feel guilty, I often think could I have done things differently, but the truth is if I hadn’t stepped in to help, Mum would have needed residential care a lot sooner. My husband was a massive support and I couldn’t have helped Mum as much as I did without him. He would spend a lot of time with Mum chatting while I was running around sorting things out.
The Hardest Conversation
In early 2014, Mum was diagnosed with vascular and MS related dementia, this compounded the problems Mum already faced. Her personality began to change as the dementia took hold and our relationship was tested once more. Dementia would cause Mum to have very vivid dreams that meant when she woke up she didn’t recognise where she was. She would call me in a panic, you could hear the fear in her voice. I would talk to her calmly and gently until I had convinced her she was safe and at home. We’d then chat until she felt ok, she would then usually joke with me about her ‘daft brain’, and how sad it was that this was happening to her. It was heart breaking to see her going through this.
The level of care Mum needed to keep her health stable steadily increased, it became harder for me to give her the help and support she needed from a distance, so my visits increased which made it easier for me to manage her care needs and give her the support she needed. We managed for another year or so, until mum stopped recognising the ringtone of the telephone and she couldn’t remember how to make a call. She also acknowledged that she was lonely and didn’t want to live on her own anymore. It was at this stage that we both realised residential care was what she needed. That conversation with Mum is one I will never forget and was the hardest I’ve ever had with her. She agreed that it was the right time to move. I think she’d had enough of fighting to keep her independence, she looked frail and tired and not the strong independent woman that I had known all my life.
It wasn’t long after mum moved into the nursing home that there was one final cruel twist in our relationship. My husband and I were visiting, we walked into her room and she looked straight through me with a blank look, not the usual smile and welcome. She recognised my husband straight away and asked him to come in and sit down. I sat down as well and started talking to her, but it was obvious that she did not know who I was. I made an excuse that I needed to go and speak to someone, Mum said ’you can go, I want him to stay’ meaning my husband. It was devastating, the realisation that Mum did not recognise me. When I came back into the room mum said ‘what do you want now?’, I truly believe that she thought I was her carer, I’d spent so much time in that role helping her at home and I think that’s what she remembered. I am convinced that she remembered my husband for longer because he spent lots of quality time with her while I was sorting things out for her at home. The feeling that the person who gave birth to me and brought me up no longer really knew who I was felt like a type of grief, Mum was alive but was looking at me like I was a stranger.
Fish and Chips by the Sea
I did get one final moment where I got a glimpse of Mum’s personality, we managed to take her out on her 72nd birthday for fish and chips by the sea near her nursing home. She loved the sea, and fish and chips was one of her favourite things. She smiled at me as I was helping her to eat. I don’t know whether it was the fish and chips that made her smile, or whether there was some recognition there but either way she was happy. That turned out to be the last meal I shared with Mum before she died. She always used to tell me that the night before I was born I’d stopped her eating a plate of fish and chips when she went into labour. Fitting maybe that our last meal together should be fish and chips.
One of the reasons I set up Annie’s Care Advisory Service is to try and help people who find themselves in the same position as I was with Mum, so busy doing the practical things that need doing when caring for a loved one, that they don’t get to spend enough quality time with that person. I want to use the experiences and knowledge I’ve gained to help free up people’s time so they can spend more quality time with their partner, child or parent.