One of the most common questions I was asked during my dad’s dementia was, “Does he still know who you are?” In my mind, and taking into account everything that represented expression and communication from my dad, I always felt confident in replying “Yes!” For many families, however, the answer is less clear-cut, and that is just the tip of the iceberg when it comes to the emotional impact of dementia.
I think at pretty much every point in a loved one’s dementia, from the onset of symptoms and eventual diagnosis, through the period of time that follows - as everything that represented your life with your relative gradually, and sometimes suddenly, changes – to the more advanced stages and then eventually end-of-life, one thing that never leaves most families is that sense of loss.
It is characterised by observing the changes in your loved one that indicate what they are trying to cope with, changes that provide a constant reminder that dementia has invaded your lives. It is enhanced by not being able to communicate with them as you once did, leading potentially to that devastating time of feeling that they don’t know who you are, and it is ultimately driven by a constant sadness that life will never be the same again, that dementia isn’t curable, and that you face a future you never expected and do not feel prepared to cope with.
For many families, this accumulation of circumstances can replicate something akin to the grieving process. It is common to feel angry, upset, bewildered, confused and numerous other emotions as a result. That sense of loss isn’t easy to comprehend or deal with, it can creep up on you and become very overwhelming, and for some people it can make them feel that they don’t want to see their relative any more.
Watching the decline that comes with dementia is tough. Trying to remain positive for your loved one’s sake, whilst feeling empty and desolate yourself is a very hard show to keep on the road. At some point I think we all break down, but it’s really important not to beat yourself up about that. We are human; feeling and showing emotion is natural and should never be condemned.
The greatest problem when you feel you have lost something is wanting to find it again. We will turn our home upside down if an important document or item goes missing. If we lose the love of our life, we can spend many years hoping for a reconciliation before potentially both parties find that having been apart they simply can’t live without each other. Dementia, however, doesn’t offer quite the same opportunities for resolution.
Instead, coping with that sense of loss means adjusting to a new reality. Potentially you will be taking on a different role – for example becoming a parent to your parent, or a carer to your spouse or partner. Additional responsibilities may well come your way, and over time you could find yourself searching for new and ever more innovate ways to find happiness together, or simply exchange thoughts or emotions. And yes, ultimately it really can end up feeling like the weight of the world is on your shoulders.
Unfortunately this whole new world can often only heighten your sense of loss. At the very time you are craving normality and the life you had, you are having to adjust to a different set of rules and expectations. Why does it hurt so much? In my view, the more it hurts and the deeper that sense of loss, the greater the love is that you feel for your relative. The searing pain of loss is always most acutely felt for the people we love the most, and it is that love that hopefully sees you though the sense of loss that you are feeling.
In my case, my love for my dad did just that. It was never easy to always see beyond the situation we were in together, nor did a day go by when I didn’t dearly wish I could change things and put them back to how they used to be before he developed dementia. Sometimes the more immediate battles over care and support became a distraction from the emotional toll, but it was always there, waiting to hit us hard once again.
Coping with your own sense of loss is something that is very individual. I can’t promise it gets any easier, nor that you won’t re-live it all over again when the end of your loved one’s life comes. The sense of loss you feel over a death, during the planning for a funeral and afterwards, in some ways feels more natural, and is perhaps more easily understood by people without experience of dementia, but for me I found it quite exceptionally painful, purely because I still wanted my dad to be alive, regardless of how his dementia affected our lives.
You can follow me on Twitter: @bethyb1886
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