This is going to be a long one because I need to set the context, so bear with me!
As most of you know my husband sustained a severe brain injury nearly 3 years ago. He had such a devastating raft of injuries and complications the prognosis and therefore our furture was bleak.
Fast forward to today and the reality could not be more different. My husband has made an extraordinary recovery in the context of where our expectations were set. He's still a very damaged man, but our lives today and the future are anything but bleak. We are trying and, in many ways, suceeding to create a new normal.
Throughout this journey my sister in law has been my silver lining; we alternately held each other up during the acute phase which lasted many months and was punctuated by many heart stopping crises and, as we have moved into the long haul of rehab and recovery she has been a great sounding board and invaluably patient listener. Without brain injury we may never have been close and I can honestly say today that I love her like my own sister.
When my husband was very ill we took the decision as a family, on the advice of the solicitors pursuing the civil claim, to appoint their financial deputy through the court of protection. This is done when the individual has no capacity to either manage their own affairs, or make decisions about who they would like to do that for them. This was without question the right thing to do at the time.
The requirements of a court appointed deputy are many. Record keeping, justifying and evidencing all spend is required. This is a crucially important service for someone with no capacity, but can be bloody awful if you happen to be that person's spouse! Seeking permission for decisions that most people wouldn't give a second thought to over a long period of time is no fun at all, not to mention the vast amount of admin required; in the context of everything else you have to deal with in our situation, it's a massive pain in the arse. It's also nothing like the 'normal' any other married couple would recognise.
Imagine my relief then, when exploring whether it would make sense for me to become Jake's deputy I discovered that there is a sort of half way house solution. When the individual's capacity develops and they are assessed as having the capacity to decide who they would like to manage their affairs and that they understand what that means, the court of protection appointed deputy approach is no longer necessary or appropiate and a lasting power of attorney order should be introduced. LPOA doesn't have half the reporting requirements and, most importantly, the individual whose estate it applies to is much more involved. This advice came from the Office of the Public Guardian and the chap I spoke to stressed that it was soley the individual's decision who they appointed, was usually the spouse and that the family didn't have to be involved at all unless we specifically wanted them to be. "Well, why wouldn't they be involved?" I mused. "Hmm..." was his noncommital response.
At the time I thought this was odd. Now I wonder if it wasn't borne from experience!
I duly provided my sister in law with all this information both on the phone and in a follow up email with useful links attached, proposing that she and I act jointly on his behalf.
Her response? She is very clear that she is "comfortable" with the current arrangement and doesn't want it to change. This has saddened me for two reasons; the first is that, despite trusting me to bear the day to day burdons, decisions and personal sacrafices of supporting her severely brain injured brother through a challenging recovery over the last three years (I don't need to tell anyone here what that's like!), she doesn't trust me to have his best interests in mind when it comes to the money. The second is that she doesn't seem to want Jake and therefore us as a couple to have the same normal as any other married couple with regards to managing our finances; if he is no longer without capacity then surely he and we derserve the right to some normal, even if that's via LPOA? I tried to explain all this to her yesterday, but she shares the same bloody-mindedness gene that has characterised my husband's remarkable fight to recovery!
I'm sure being some distance away and not having to do any of the work or deal with any of the day to day frustrations and discomfort of the deputy arrangement is 'comfortable' for her, but I wonder how she would feel if the same rules were applied to her marriage and her husband?
I get that all of this is highly emotive and difficult for ALL involved, especially as their mother is very ill and their brother has a complicated medical condition and she is bearing the brunt of this. I do NOT want to fall out with her over this, she is my friend and my husband's beloved sister, but I just don't know what to do next.
The way I feel this morning after a sleepless night is that we should just go ahead and do it with me acting soley, which he his open to and we are free to do once his capacity has been formally assesed. I am very aware however that my husband will be influenced by my view (also 'normal' for a husband and wife!) and I don't want my hurt to send us in the wrong direction and sway him to a decision he may regret.
All the signs are that, if he continues to recover as he has, he will have full capacity in a few years, so all this will be moot, it just feels very, very wrong to me today.
Please let me know what you think. I truly want to do the right thing for my husband, me and our new normal.
Thank you for bearing with me!