On stability

I saw a line graph this year for deterioration rates in different types of Dementia. While some types might show plateaus between the slopes, the Early Onset Alzheimer’s chart displays a steep diagonal line downwards. My own experience doesn’t substantially contradict this, but I do seem to be in a pocket of stability at the moment, at least in contrast to the nosedive my husband’s cognition took after the first lockdown.

Some things are circumstantial. We now have a regular carer two to three days a week. We have a new lodger who is helpful, laid-back company as well as being helpful as a source of care costs. There is more happening in general so we have fewer days where his boredom makes him frustrated and angry. My own health (in the 17th month of Long Covid) is slightly better (although I am writing it from bed after a crash, while he paces next door).

We have also settled on a drug regime which seems to work. I don’t really know how far donepezil and memantine are preventing his decline but he suffers no side effects and is no longer resisting taking them. The real winner is myrtazepine. He settles in the evening more quickly now and, while I wouldn’t say he’s happy, he is not as frequently and heartbreakingly sad as he has been.

Every single part of this requires such a huge effort. Co-ordinating care days and other activities involves my sitting with calendars, my diary and a blackboard and desperately trying not to muck things up despite brain fog and fatigue. There are still endless emails to be sent and my third care needs assessment hasn’t produced any new help. At least my husband’s GP has finally arranged for a regular prescription renewal, so my month isn’t punctuated by calls to the practice and chemist (meanwhile losing track of my own medication).

I think the real stability comes from me though. I wouldn’t say that I was more relaxed exactly, but my expectations are more neatly tuned to his current behaviour. For example, I no longer try and make him wash or get undressed. I am usually allowed to look after his bank card if it’s not actually in his pocket. And I am more resilient because of having time away.

Ironically all of this is against a background of great change for me. I have been made redundant (my illness is apparently a coincidence with the deletion of my role) and am currently on gardening leave. I have now secured part-time work for when my notice finishes. Between my reduced earning capacity, continued fatigue, and care costs, things will be tight. But at least, for now, we have been spared any further loss of cognition, speech and continence. Long may it last.