It is on the ‘bad’ days that feeling the love of others makes all the difference, even though on the ‘good’ days it feels great too! On the bad days, when all seems doom and gloom, the open love of others, and the memories of that love can turn things around. I was lucky enough to spend a week away recently, with a substitute BUB, and an opportunity to meet ‘my imaginary friends’, and this friendship and love has been supporting me ever since.
However, I’ve been wondering, how does this impact on a person with dementia, if they can’t remember their loved ones, or the love felt and expressed by them? When I was nursing in a secure dementia unit, many family members used to say they felt desperately sad their loved one could not remember them, often not their face or name, or even a glimpse of how they knew the person, and it always seemed much sadder for the family member, than the person with dementia.
Now that I’m wearing the shoes of the person with dementia, I’m not so sure… When volunteering in a nursing home a year or so ago I spent a lot of time with a lady who the staff said ‘was away with the faeries’ and remembered nothing! However, when I spent time with her, she ultimately was able to recall a significant amount of her past, including things like the features of her family, where she went to school, and even what she did the day before. The frustration she discussed with me about not knowing how she knew this information was acute, and she sometimes hit herself on the head… The thing that upset her the most was that she knew the information was in there, but most times could not easily retrieve it.
After a few months, this lady also seemed vaguely aware that if the staff had spent more time with her, her daily experience would have been significantly better, and so often became more frustrated with them, angrier, and ‘less compliant’… She was then treated with more medication, rather than more time. In a way, I felt guilty for having spent time with her to bring on this awareness, even though she was not able to voice it, and instead acted out. We are still a long way from improving these sorts of experiences for PWD, because of understaffing, and lack of time, and our own understanding of the frustration felt by people with dementia, and the amount of insight many still have. She stood most days near the front door, waiting for the daughter who never seemed to appear…
I am delighted to have friends all over the world, including the ones I have never met, and my childhood love of writing letters and having penpals lives on through the internet. The wonderful thing about the internet is the access to social media, emails and blogs, and the ability to save and then retrieve the ‘conversations’. In this way, I feel that love and memory are in some way preserved, and the person living with a diagnosis of dementia is suitably blessed if they are at all able to access the internet.