Ok, so its pretty obvious to all of us that there are certain things that are definite in life. Death and taxes are usually the most common two that spring into peoples minds, in fact there is a common saying that these are the only two things that are for certain in life. I guess that is supposed to be a snipe at the tax man, comparing him with the ultimate fear that mankind faces when we contemplate life. No body wants to die. But yes its a fact of life so I guess the fact of the matter is learn to accept that some time, somewhere along that weird and wonderful road of our life, it is going to end. In my case I really hope that it comes early and quickly, and I know that if your reading this, you must think I sound pretty selfish and lame.
Well everyone is entitled to their own opinion, and having watched my father die of cancer, a disease i accept kills people of any age daily, it was extremely painful to watch him suffer so in the end. I can’t begin to tell you of the experience and emotions that you begin to feel as someone so dear to you waists away. In my fathers case, my memories of dad before that time were of a powerful, strong and very determined man. Stubborn yes, selfish…yes. He was a typical man in so very many ways, but he was my father, and he worked his whole life to give me every chance to be all I could be. To me, dad had always been there. Rarely did he stay home in bed on the sick. Never did he miss work with a hangover, nor did he ever let me down by failing to be there, running away when the going got tough or failing to provide for me. Admittedly I didn’t have everything I ever wanted, but I never went hungry, nor did I never feel unloved.
It is the most difficult thing in the world to watch someone of that status become totally incapable of doing anything by themselves. You watch the movies, shed the tears, and learn from others around you how dastardly death is to a patient with cancer, but until you live it yourself, nothing can prepare you for it. I was lucky in that my mother provided most of the close quater care, while I just managed the affairs and difficult things. I recall how towards the end just being in the same room as dad hurt, as I couldn’t stand to see him in such a way, and this in turn caused a different type of hurt, as I felt so guilty at shutting him out so. It still haunts me today that I found it so difficult to sit there and talk with him.
Truth be told, I was kind of relieved when he died, because it was such a strain to see him like that, and to feel so helpless. But I can honestly say, as I live the experience of Alzheimers today with my mother, that what my father suffered was little compared to the legend of dementia. Now that might sound completely wrong, and in many ways I can see the different points of view, but believe you me, when it comes to trying to live in a world that has no concept of dementia, no tolerance of people living with it, and a society all too willing to take advantage of and rogue people suffering with this illness, it makes life impossible for those of us in society that are honest, decent people.
My mother is the kindest, nicest, most gentle person in the world. We all love our mothers. They have a special bond with us, from the time they carry us in their womb till that day we spread our wings and leave the nest, we are their babies. For most of us, we share a strong personal relationship on some level with our mothers. Men are tough and can take the things that life throws at us, or so our mentality seems to lead us to believe, and so when like in my fathers case, cancer got him in the end, I guess in my own weird way of thinking, it was ok, because he was strong enough to deal with that. However, in the case of my mother, you have no idea how much it kills me to watch her daily unable to function as her memory slips away from her.
Today we went into Lloyds TSB. Now fair enough I understand that banks have procedures in place to protect their customers, but I can honestly say I left that building wanting to jump off a bridge today. There is nothing worse that sitting across the desk from a cold hearted woman who has no concept or idea of the frustration, pain and complete hopelessness of the situation when all you are asking is that they update your mothers address, and when she looks at your mother and asks her, “So what is it that you want to do today Mrs Strobel?” and your mother can only stare back at her with a blank expression, unable to exactly remember what it is she’s meant to be saying. As I sat in that room I just wanted to scream. I wanted to smash the table, rip the computer of the desk, and shake the woman who sat there telling me she was restricting my mothers account until we obtained an Enduring Power of Attorney to take over my mothers affairs. I mean who the hell is she to tell me that I must now manage my mothers affairs?
Granted its not her fault, its a system that is inflexible, uncomprehending and completely lacking understanding of what it feels like to be in these shoes. You can’t get angry at mom, as she cannot help being forgetful under pressure. You can’t really get angry at the individual for doing her job in accordance with the rules of the bank. It’s a horrible situation, as you can’t get anywhere with anyone. Every place that you speak to has a different set of rules. Every person that you deal with has a different level of compassion and understanding. You deal with one who’ll bend over backwards to help, shows empathy and real understanding for the predicament that you find yourself in. On the other hand, most people don’t give a shit. They have no time for your frustrations, no desire to want to get involved or offer support or understanding and only end up causing yet more distress and confusion.
I sat there this afternoon, cold, distressed and bursting from inside while a total stranger told me in front of my mother that my mother was now deemed incapable of managing her own affairs and it would be my duty as her carer to step up to the mark and take over from her. Do people not realise that just because someone suffers from dementia that they still have feelings? Do people not realise that their words are a two edged sword and cut deep into peoples emotional state? I left the building with tears streaming down my face, much the same as they are now. Not because I don’t know what she is saying is true. Not because I feel sorry for having to step up to the plate to fill these shoes. But distressed that my mother had to sit there and go through that. Its hard enough for her to deal with not being able to remember the stuff she so desperately wants and needs to remember. I felt so belittled and humiliated, not for me, but for my mother, and it is a whole new world of pain that I never knew could exist!
And so we plod along the road of forgetfulness, each day bringing with it a new crisis, each moment a new concern to have to try to deal with. In many ways you have to put your own life on hold, and that is not the easiest thing to do, especially in this day and age. Each day presents new challenges as slowly you try to cater for the new things that come along with the illnesses that mom faces, and lets be honest, at her age, there are a few, but before god, I swear, its the Alziemers that is the wort of the lot. The rest I could live with and work around, but memory is a precious thing and to loose it must be the most distressing thing in the world. On a calm day mom is still much her beautiful self, but on a bad day, shes a nervous wreck, frustrated, hurt, depressed and alone. No one really realises that for those people that are going through this whole nightmare, they are in essence alone. You can’t understand what they are going through. They have few people to talk to, and the grim reality is that it is much the same for those around the person who is ill.
So maybe this is why I have a jaded outlook on old age. I’d rather live wild and leave this world at 50, before it all goes south and I find myself going through the things I’ve watched the two most dear people in the world have to endure gracefully.