When my husband was at home, I simply couldn’t bear to think about the him that used to be. I had to push the memories away because it hurt too much. In any case, I was too tired dealing with the person there now, and that was upsetting enough.
Now that he is in residential care, I have more space and time to think. I live in the flat we bought and furnished together, filled with memories of our life. It’s still viscerally painful to think about the occasions when it became clear he wasn’t himself anymore. But I am more able to think about the good times.
Remembering them is bittersweet. It’s life-affirming to think about the person he was before Alzheimer’s took him away. But impossible not to think of how terrible a loss it is. Selfishly, I also mourn what we could have had, and that I only had him for such a short time. We got together at the end of 2009. I first noticed odd things in 2014 and things became impossible to ignore in 2017.
I must also admit that the memories are also in some ways validating for me. The history of ‘us’ has been overtaken by Alzheimer’s (to such an extent that I am indelibly associated with it by some of his friends and family). It helps to remind myself that we were once a couple in love and also … just an ordinary couple negotiating a relationship.
So I miss what we had and who he was. But quite unexpectedly, I also miss him terribly as he is now. Chronic illness and the need to earn a living means I don’t usually see him more than once a week. When I do he is usually lovely, funny and affectionate. Occasionally a facial expression or a comprehensible sentence will be just like the old him.
Of course this pleasure is only possible because of the care professionals who deal with all the hard stuff. And it’s interleaved with guilt about how I felt when he was at home. I am not a saint, and he was scary and upsetting. But I wish I had been able to overcome the fear and hurt and appreciate him when I saw him every day.
All of this is against the background that he is in the late stages of Alzheimer’s. Five years from diagnosis is often quoted as the average lifespan for Young Onset Dementia. 2024 is five years, and his diagnosis was late. I have some idea what to expect from those ahead of me in their journey, but I am not ready. I have been grieving the loss of the person who was once there for some years. But I know there is much more grief to come.
The Dosette Box 