Ah, the topic that I’m sure the majority of the world has been through at some point…but maybe not so many in my case.
3 years ago my mum was diagnosed with early onset dementia after suffering a mental breakdown (which happened while she was in France just to make life easier). My mum and I never had a great relationship while I was growing up. She was a true workaholic in every sense of the word and I barely saw her, between trips overseas and interstate, working ridiculous hours and having a life of my own. Starting as a secretary, she worked her way up to the position of managing director – a great achievement! However, all the stress eventually took its toll. I’m not writing this to boast about her position but more for some background into her situation and the type of person she was pre-mental breakdown. Despite not being particularly close, she was still the person that I could call when I was sick, down, upset or generally not coping with life. As she retired from her job at the ripe age of 53, I knew things were going to change, but not to the extent of how significantly in such a short space of time.
Living out of home at the time, I took the situation on board like a grain of salt. At this point she was still my mum and I thought that as she’d have more time on her hands she’d become a greater part of my life and be able to be there for me like most mums are. This happened for a few months, but as time passed I began to notice quite a significant change in her demeanour. She was still able to drive and still recognised us, but I noticed repetition in her speech and errors in her writing. At this point I could still count on her as my mum. It wasn’t until a few months later again that I noticed her situation had gotten even worse. She was no longer able to drive, and unable to communicate particularly well with anyone. While she still recognised us at this point, she was beginning to become a stranger to me.
It wasn’t until I went overseas for 3 weeks (I was lucky enough to go to South America through my job), that I came back and saw her and really began to realise she was checking out of the world. I was still living out of home, but the stories my brother and dad told me were affecting me more than I knew. Combine that with work stress and other emotional situations at the time and I began to crash. It was almost like I’d been running away from the issue. Because it had been such a slow (although now that I think about it, not that slow) process, I gradually became more and more used to the situation. However when I was crashing, I just wanted to talk and cry to my mum, and that’s when it finally dawned on me, I had lost my mum.
This illness is not common knowledge in society, like cancer for example. It’s so hard to explain it to people that haven’t heard about it or been through it before. It’s certainly not easy on the family and friends, just like cancer or death would not be easy, however the person has not physically left the planet just yet. It’s like you are watching someone die a very slow and painful death when you’re unsure of how much time they have left on this earth. The thing that I take some comfort in is that because her brain appears to have checked out of life, she isn’t in any pain and seems to be quite content living off in her own world.
I often say to people that it is like she has died and I still believe this to be true – she has died as the person and the mother that I knew her to be. When I did come to this realisation I had to remind myself that it was ok (and normal) to grieve her loss, just as if she had died. While I was grieving, the hardest part was to explain to others how I was feeling and that I had in fact lost my mum. Because she is still physically here on the planet, people don’t immediately or automatically understand. This was another burden of the situation. When you’re grieving the loss of a parent, especially at such a young age, you don’t want to have to explain why to people. Would it have been easier if she had just died? Absolutely. My memories of her wouldn’t be tarnished by the new and not-with-it person that she has come to be. I would still remember her as a strong and independent woman with drive and motivation and a great knowledge about life. My dad wouldn’t have had to quit his job to care for her (to the point where he made himself physically sick), and we wouldn’t have to worry about the financial burden of aged care facilities ($450,000 for a deposit, anyone?).
Having said all this, some people just don’t get dealt a great hand of cards and life is what it is (to put too many cliches into one sentence). Once you grieve and accept the situation, you begin to find humour again in your life. I’ve now accepted that my mum is gone and in her place is a complete nutter with an amazing appetite for bananas. When I go to visit at the nursing home I often have a good laugh at her and the other people in the memory support unit because you have to! They all have no idea what’s going on in life and they’re quite happy with it. The MSU ward is more lively and happy than the regular ward at the nursing home which is full of sad, sane people that know they’re not physically well enough to look after themselves, and that’s kind of depressing.
Early onset dementia sucks, there’s no other way of putting it. But it definitely sucks more for the family, friends and anyone else affected by it than it does for the person with the illness, so take comfort in that if you need to take comfort in something.
Til soon, Em