There are many negative things that happen after a diagnosis of dementia, and many that are ongoing challenges and changes, but for me the most difficult ongoing ones to live with are the isolation and loneliness. So many friends slip away after finding out you have dementia, not because they are bad people, but because of a number of things including fear, ignorance, stigma and not knowing what to expect or how to handle it. I’d have to say right now in my life, if I didn’t have online friends via my blog and other online forums, I’d feel even more lonely and isolated. I have a few of friends, who do stay in closer contact, but who don’t live close enough or have time to visit, so my days are without social human contact other than the two carers who come twice a week, the conferences and dementia committees and forums I actively choose to attend, and the various medical appointments I have to attend. There are other friends, who do stay in touch, but it is via email or my blog, and although it is supportive to know they have not deserted us as friends, they don’t often visit.
Being younger, means your friends are mostly your age, and therefore are busy with their lives. Almost no-one uses a phone these days, except to send a text message. Unfortunately phone chatter is not so easy for me now, as remembering faces and finding the words is more difficult. On top of that, without all the other communication clues that face to face contact offers, I often cannot keep up with or comprehend the conversations. My dear husband offered to give up work this week to keep me company, but this is not the solution; I believe it is important for him to maintain his professional community as it is a good form of respite, and it is our only source of income. A couple of weekends ago, we went to an engagement party, and although we didn’t stay late, at least we went out. On the way, my husband said how happy he felt to be going out for a change, as it happens so rarely now. Following this I then booked to attend two concerts, probably as a way of assuaging my guilt! I am writing about this simply as a way of expressing how it is, the reality of the world of many people and their families living with a diagnosis of dementia.