Losing My Independence

I love my life!! I know that may sound strange from someone who has heart troubles and a diagnosis of early onset Alzheimer’s, but life in general is great because of my family and friends, well, all apart from Wednesdays that is!! Let me explain.

Just before Christmas it was agreed that to give my “Angel” Elaine a very well earned rest I would have a community support worker to come and “Sit” with me for a couple of hours once a week (on a Wednesday) whilst Elaine can go and spoil herself a little and do things without having to keep an eye on me all the time. My new “friend” came round a couple of times and is due round again this week after the Christmas break.

As I awake every Wednesday I feel as if I have lost yet another little piece of my independence which will never be brought back. I am in such turmoil! On the one hand there isn’t anything I would not do for “My Angel” Elaine as she has done more for me that I, or you, could ever imagine, BUT!!!! Having to have someone to come and “SIT” with me for two hours is something I am having a real problem with. Please don’t get me wrong, this guy is a nice enough bloke and is quite easy to talk to but the thought of having to be looked after by a complete stranger horrifies me.

I look in Elaine’s eyes sometimes and I see how tired she is, my heart sinks and the feeling of guilt is overwhelming!! It hurts me so much that I am putting my soul mate through this each and every day. I am sure others in my position must think the same but just don’t always say so. It’s a feeling that is so hard to explain, all I want to do is make things easier for her and her future (my fate is sealed unless they find a cure, of that I am certain, and I have come to terms with that) so by giving her time to “Chill out” for the want of a better word and helping her to relax more is a fantastic thing!! Again BUT????

Whilst this is happening I feel as if a little more of my independence is slipping away bit by bit and being the fighter that I am, my whole body/mind and being is resisting it!! It has come to the point now where I can get very low on these days, as well as frustrated and even annoyed. My whole mood changes as the time approaches and I start to go inward and withdraw into myself so the conversation is practically NIL when my “Friend” arrives.

Am I being selfish?? I really don’t want to be and I really don’t know if the answer is yes, or no! Truth be told, since my heart troubles started Elaine has been my full time carer now for the last eight/nine years and I have not even been out through the door on my own in all that time purely for my own safety, and since the diagnosis of AD I have no road sense whatsoever and it would now be fatal for me to try and cross a road on my own.

The thing I am also struggling with is the news that this is going to be a PERMENANT arrangement!! This is what is totally throwing me at the moment; I think it’s the sheer enormity of FOREVER!!! That frightens me to death!! Once again I start to think “Is this the start of Denial of my illness beginning to creep in? Am I eventually going to be heard saying “There is nothing wrong with me because I can’t remember being diagnosed?? Can anybody imagine what’s going through my head at the moment? And how many people before me have gone through this exact same thing and had these exact same feelings??

I wonder how many people have spoken about this and discussed the implications of this happening. Nobody ever tells you this when you are first diagnosed!! Nobody ever says “there might come a time when even though you are very aware what is going on in the world, apart from a few things you forget, you will have to sit opposite a complete stranger in your own house and talk about nothing!!

Such is the devastation of DEMENTIA!! This is how it feels when you feel like bits of your independence is being chipped away slowly and clinically.  Without a doubt this is one of the worst kinds of illnesses, it robs you of so many things, it hurts everybody around you without a fleeting care and causes rifts, arguments and tensions beyond belief. Elaine is my soul mate, my best friend and everything I have ever wanted, I can count on one hand the times we have had a big falling out, and I feel so bad about her not having time to herself, but the feeling of insecurity and loneliness when she is not here is a soul destroying thing and I wouldn’t wish it on anybody!!

The Answer? I haven’t got one at the moment I’m afraid, I only wish I had. It might only seem a couple of hours a week to some, and I’m sure it feels like that for my darling Elaine as well!! But it feels like a lifetime to me and to be perfectly honest about it I am having a really hard time at the moment dealing with it. I am sorry this is not my usual upbeat post but I just want to share with you some of the “Hidden” feelings we have to go through and deal with regarding this awful illness.

Maybe I will get used to it? Or maybe as I said, I may just forget what my “Friend” is coming for and just put up with it? Who knows?


Best wishes, Norrms and family xxxxxxxxxxxxxxx

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