“Tell me what we can do to help!” was the most exhausting, but not least characteristic, of responses to my husband’s pre-diagnosis behaviour. I was overwhelmed myself but had no idea what was supposed to happen next. I genuinely appreciated the intention, but felt a failure for not having a good answer. Worse, I felt I was letting both my husband and friends down by potentially wasting an opportunity to make things better.
Dementia (not uniquely) produces situations which go against accepted narratives. For example, most of what I have learned about relationships isn’t relevant in a situation where your loved one believes things which are not true, develops obsessive ideas and can’t learn from experience. A lot of well-meaning “have you tried?” don’t match the situation on the ground. This makes it very hard to articulate what would be helpful.
There’s also a certain amount of ‘Can I help? No not like that’. I once made an widespread appeal for help that mostly received no response, I think because it made the recipients uncomfortable and would have demanded they do things with my husband they hadn’t done before. The one person who did reply asked ‘will he be okay with that?’. To which the answer was not necessarily, but sometimes you have to do difficult things if you want to help (they did, and did).
Professional support is a different matter. I have been given lots of information about dementia community activities. Most of these aren’t running now because of the pandemic. But even when they resume, I don’t know how I can persuade my husband to sign up or whether I can force him to go, assuming I am over my fatigue (at which point I expect be working full-time again). Will I have failed by not taking up the offer?
I have also been disappointed by how much of his treatment is essentially conversations with me. I somehow thought that specialists had skills enabling them to communicate with people with cognitive problems. I didn’t realise that most of my husband’s care would be dependent on my being able to articulate his needs, in as far as I can. And I had no idea how many interactions would begin “what do you want to get out of this?” and end “what do you want to happen next?”.
Over time, a number of friends have stepped forward with practical help, giving me respite and providing my husband with stimulation I can’t offer. I am hugely grateful to them and the fact it isn’t possible now is bad for us both. I can also say what has been most helpful from my own friends. The phrases ‘No, don’t do that, it’s not good for you’, ‘stop feeling guilty it’s not your fault’ and (my favourite) ‘you’re his partner, not his Mum, that is not your job’ were amazing at the time, and to reflect on. Knowing this help is out there when it’s over is going to get me through these dark times. And maybe I will have found the words to ask for more.