It’s been a while. A lot’s been said since I was here last. And there’s a lot to think about. Because MW has significant cognitive issues now, it’s left to me to be the “memory” and, to all intents and purposes, the “decision maker” for all issues. I have to be the “memory” because MW can’t remember what’s said on a day to day basis, never mind when discussing important issues. I have to take notes and remember what’s been discussed. She was even asleep during one of the consultations. I’m also the “decision maker” because, despite the fact MW has the absolute final say in whatever happens, she relies very heavily on my opinion. She has real difficulty in making decisions, even for something as trivial as deciding what to eat. So I have to “make” a lot of decisions on her behalf, i.e. explain why I think a certain decision is the best one and get her to say yes or no.
We’ve had two important consultations this last month. The first one wasn’t supposed to be that important, it just turned out that way. This was a conversation with an OT at the splint clinic – for MW’s hand/arm contractures. Finally, someone has given me their opinion re: MW’s care. I get that professionals aren’t supposed to do that because all decisions are supposed to come from the patient. But it wouldn’t be so bad if they’d offer advice. No-one seems to want to do that. So, I’m left with the impression that the level of care MW receives is considered appropriate for her very advanced needs. Even though I’m fairly certain that most professionals we’ve seen wouldn’t draw the same conclusion – if they were of a mind to forward their opinion, that is.
According to the OT’s professional opinion and looking at the situation with a cold eye, residential care would be the preferred option now, for quality of care, etc. Hearing that was a bit of a relief. Not that I have immediate plans to move MW into a home. But I now have some kind of gauge to go off so that keeping her here isn’t detrimental to her health. I have a yardstick to use. Although not expressed directly, MW’s demeanour when we talk about her staying at the short-term respite home tells me that she wouldn’t be keen on residential care. What MW and I must do now is discuss the long-term future and find the balance between ensuring quality of care and quality of life. I’m not medically trained. Everything I know is through experience – some more bitter than others – or through picking up bits and pieces from medical staff. And I’m doing this on my own. I can’t do it forever and still maintain her quality of care.
The other conversation was always going to be more serious. MW’s contractures are pretty serious (I’m having a hard time not singing the word “Contra-ac-tures” in a Debbie Harry voice). This is a shortening of the muscle or joint affecting her hands, arms and neck. Her hands are pretty much shut tight now. So much so that the knuckle joint at the end of some of her fingers bend back on themselves due to the pressure of the contracture. I keep thinking it’s going to break at some point. Her arms are permanently crossed and her neck’s at a permanent 70º angle to the right, which makes feeding harder and has knock on effects with swallowing and breathing.
The consultant talked about surgery – under anaesthetic, they’d attempt to stretch and set hand and arm ligaments. Possibly some neck manipulation. Alternative surgery includes the amputation of the fingers at the first knuckle. Again, for hours under general anaesthetic. None of which is guaranteed to work or not to cause pain. Also, any general anaesthetic will be a challenge. Because of the existing contracture in MW’s neck, she may require awake intubation. This requires a tube being inserted into the nose and down into the throat, then a wider airway tube being threaded over that first tube. All whilst awake.
The anaesthetic is a whole other thing. MW is getting weaker and I don’t know if she’d be able to withstand what will undoubtedly be hours of surgery under general anaesthetic. I know that all anaesthetic comes with risk. That’s compounded by these pre-existing problems.
This is all quite a responsibility to bear for someone else. It’s hard being the “memory” and de facto “decision maker”. I’m going to have to walk a tightrope between wanting to respect her wishes, even though she’s not expressed anything directly on either subject, and doing what’s best for her health. I won’t lie, I’ve been going round in circles on both issues and I don’t have any idea what to do. But, now that I’ve had proper, professional opinion on the state of things as they are, I’m all too aware that time is running out to make a decision. I only hope I can help her make the right one at the right time.