The art of life lies in a constant readjustment to our surrounding. Kakuzo Okakura (The Book Of Tea)
No-one ever said it would be easy. There were lots of reassuring messages at the time. Everyone wanted to help us feel better about the situation we had found ourselves in. They reminded me that Finn is a fighter. “One of the strongest people we know.” They shared stories with us about their grandparent or uncle or family friend who was a stroke survivor. Don’t worry, they said, their speech has returned practically to normal now. I clung to those beacons of hope with all I had but deep down I could tell that we were in this for the long haul.
My world had shifted that day. I was responsible for our lives now. Until he was better at least. I had no idea what I was doing. He had multiple sources of income, some of which was through self-employment. How much was his income protection policy worth? I had no idea. The last thing you want to think about at a time like that is all the practical stuff but I had no choice. The mortgage, child support and bills had to be paid somehow. I remember my parents driving me home soon after the stroke happened so that I could collect all our paperwork. Trust me when I say that Finn had clearly never heard of a filing system. He had papers in his car, the bedroom, kitchen, and office (but not in the correct drawers that I spent so long labelling!) It might have been organised chaos in his mind but I didn’t have a clue. There were mysterious policies with no information that I could find and multiple outgoings that I couldn’t correlate to any paperwork. It took me days to piece what I could together and work out that our new income would leave us thousands of pounds short every month. Cue the start of my very stressful relationship with our mortgage company.
To top it all off a lot of things were in Finn’s name alone and he hadn’t set up a power of attorney. For that reason, our friends very kindly put us in touch with a lawyer. They said they could help us apply for an emergency interim deputyship order in the Court of Protection as Finn didn’t have capacity back then to sign a lasting power of attorney (LPA). I had to borrow the money from my grandad to pay all the fees but what choice did I have? The doctors had no idea if or when Finn would regain his ability to communicate with us and we were facing bankruptcy if I didn’t take action.
Despite the lawyers terming it an “emergency order” the time kept ticking by and I still didn’t have any authority to act on Finn’s behalf. It really hammers home the importance of creating a Lasting Power of Attorney. As the time passed Finn’s capacity gradually returned until we were stuck in a rather grey area. Finn was assessed as having capacity as he possessed the ability to understand and weigh up information, provided that it is made accessible to him. Just as you might apply to someone who is blind and requires brail. However making complex information accessible to him isn’t easy. So there I was with a husband who is technically capable but in reality didn’t fully understand the information he is presented with and was also unable to communicate over the phone with people. Nevertheless it meant that we had to withdraw the application and lost the money spent on Court fees and lawyers.
Thankfully Finn has improved significantly in terms of his aphasia but it is still a struggle. Today we had to digest the information that our solicitor sent us about setting up a Will and LPA. We met the solicitor a few weeks back and Finn only understood parts of what she told us. That means that once we get the written information he needs time to go through it and digest it. Then anything complex we have to discuss using diagrams and pictures. It takes a lot of time and a lot of energy on both our parts to have these conversations but they are necessary and important. We’ve put this off for a couple of weeks so far as it needs both of us to be fresh and have no distractions otherwise the frustration wins.
I make sure Finn is involved as much as possible in all our household affairs. All decisions are joint ones but it does mean more work for me. I will have the conversations with the accountant , estate agent or mortgage company (to name just a couple) and then I have to find a way to communicate it back to Finn effectively so that we can discuss it together. We find it helps to schedule in a morning or afternoon on a free day so that we can both rest afterwards.
As I write this post I feel that I’m probably boring people with all the talk of lawyers, money and bills. However I feel that in order to understand our journey you need to know that it isn’t just the health aspects that make things difficult. Finn didn’t only lose his speech that day. He lost his ability to work – something that forms a huge part of his identity. From that he also lost a huge chunk of income and we have had to put our house on the market. We had only been in the house a year when Finn had the stroke. It was our dream home and the place we wanted to start a family.
Please don’t think I’m complaining though. Yes it’s been hard. Very hard. I’ve grieved for the life we once had but I also feel extremely blessed and lucky to have experienced that life. Even if just for a short time. As I look to the future now I see a new path for both of us. I don’t know what it looks like yet but our experience has taught me to appreciate everything that life sends our way. It may seem like a challenge but some of the most rewarding experiences come from overcoming adversity.