I have been looking after my wife full-time since her MS became SPMS ten years ago and she became bedbound. This is the first time I have communicated with anyone else with MS or carers, so please understand that my responses to your questions are unique to our situation, personalities and relationship and are uninformed by any learning from others with more experience.
At first when I saw my wife struggling to do things, I rushed to help, to try to remove the struggle altogether. Although she didn’t say, I sensed I might have been worsening her feelings of helplessness, I was always looking for and encouraging her to try new treatments, NHS or private. Mostly futile, as you’ll probably know. I can see now how clumsy and insensitive I was, getting all exasperated if she resisted using aids or lacked enthusiasm for another ‘treatment’. In time, I stopped all this desperate nonsense and now try only to reduce or minimise the struggle. Except for the things she can’t do at all, in which case I do these for her. As her ability to do everyday things fades, I now gradually fill the void. After so many years it becomes second nature and is now almost imperceptible to us both.
I have consciously not engaged with other carers because I didn’t want to define myself as a carer or my wife as cared for. We are husband and wife, I just happen to have to help her in ways I didn’t expect. We have a full-time employed carer who helps look after the house so I don’t have to worry about that and she looks after my wife for a few hours every day to let me do other things. She has been with us for twelve years and is the only person who really understands the dimensions of the disease; she shares the emotional load very helpfully. I am also very lucky to have the patient support of a very understanding and loving father and sister who let me vent my frustrations when ever I need to.
I have never talked to my wife about my fears, her capacity to have deep discussions about things was lost long before I mustered the courage, or acknowledged the need, to talk about any of the ‘what ifs’ of MS. I also find that it’s better for our mental wellbeing not to make too much of a deal of MS or its devastating effects (actual or potential) and instead to just manage the consequences if and when they arise and make the most of life in the meantime. Despite the extent of her disability, my wife enjoys a relatively good quality of life but in a completely different way than when she was able to be active, this is possible (for us) only by keeping a light-hearted outlook. I encouraged my wife to grant me (and her closest friend, in case anything happens to me) full Powers of Attorney shortly after she became unable to write or sign her name or to communicate properly. I hope I know her wishes (I think so as I seem to be enacting them) but I wish we’d talked more thoroughly about things when it was easier to do so (although for me there never seemed an easy time for that) just in case. I recommend you get this of the way now, if you can, but hope you’ll never be ill enough to invoke the PoA.
I hope this helps in some way and send my best wishes to you and your boyfriend.