This is going to be a hard one to write, so please be gentle with me!
But first, I'd like to reply to some of your comments. Annabeth, you mentioned free NHS hearing aids - which sound brilliant, by the way - from Specsavers. I've googled it and apparently it's only by referral from your GP and not all areas participate in the scheme.....and of course ours doesn't 😒. But I will be ringing my GP this week and asking for a referral back to audiology, there's apparently an audiology clinic at our local community hospital so I won't have to travel to either of the big hospitals. Happy Introvert, husband's most often repeated question, several times a day, is "What's for dinner?" - he's very food focused. He also asks me nearly every day what we're having for breakfast, despite the fact that I rarely eat breakfast and tell him that every time he asks and just suggest he has whatever he wants for breakfast. The suggestion for not telling him about appointments until the actual day is a good one though. Ruta, husband's cardiologist and consultant psychologist both said that his CI is caused by his heart condition (his poorly heart not pumping sufficient oxygenated blood around his body and to his brain, and the small blood vessels (too small to have stents fitted) being blocked). So not caused by his meds, but thank you.
As I've said, I've been making all sorts of plans and doing a lot of thinking these past couple of weeks. Over the weekend, I had a good hard think about last year, and I realised with the benefit of hindsight that it had been an especially hard year, meaning I felt completely overwhelmed. When husband was first diagnosed with CI 4 or 5 years ago and was immediately discharged from the service, we weren't really given much information about exactly what it meant and how it would possibly progress - they just sent us a handful of leaflets a week or 2 later. So we didn't really know what to expect. Back then, although his short term memory was already failing, he didn't really have many more pronounced symptoms, these all started to come on quite gradually at first. Last year, however, they were definitely getting a fair bit worse, all his symptoms - memory, concentration, difficulty with understanding instructions, confusion, failing to recognise photos of relatives, major personality changes - all seemed to escalate over the year, often leaving me with feelings of despair. The fact that some friends and family don't understand and don't see him as being much different I find hugely frustrating as well - they just don't seem to get the fact that they only see or talk to him for a short period of time, just an hour or 2, which does not show the clear picture. One close relative doesn't really understand at all, although her husband, whose mother has Alzheimers, understands very well. Other relatives and friends think I'm exaggerating or worrying about nothing, as husband's problems are more mental than physical and, on the surface and for brief periods, he seems ok to them. But, as has been said many times both by me and those of you in a similar position, they don't live here!! They don't see him all the time! So they think I'm just being a drama queen. Last summer, in an effort to cut down on the amount of pressure and sheer volume of stressful stuff I was having to cope with, I made the decision not to buy birthday, anniversary and Christmas gifts anymore, I just found it so stressful to think up, source, buy, wrap and send gifts and felt it was pressure I could do without. I did it across the board and told everyone my decision, most people understood (or said they did), a couple were quite sniffy about it and even said they didn't see why I couldn't do it anymore. Ce la vie.
Now I'm trying to make plans and work things out, I'm feeling slightly less overwhelmed - it's a lot of work and not easy to find out/do some things, but I'll get there eventually. The thought of what lies ahead, though, I do find quite scary. Especially having no car - husband has now accepted that he has to give up driving this coming summer when his current insurance, tax and MOT run out. As I've said before, things like food shopping (we're starting to have it delivered), getting into town and back, finding out about local charity or volunteer schemes to take us to GP appointments and the like, are all relatively doable. It's the lack of spontaneity, e.g. when it's a nice day thinking 'let's pop out for a coffee or picnic, dog walk on the beach or car boot sale' that worries me the most. Not having the freedom to do spur of the moment things, without planning in advance - which of course takes away the spontaneity.
And having to cope with everything if husband does get some form of dementia - I wasn't really cut out to be a nurse, I haven't got the temperament or patience. But it's amazing what we can and will cope with when we have no other choice! It's bloody scary, all the same.