As I sit here and write this, the waves of guilt are washing over me like a tidal flood. Sometimes things change far too fast for people like me who have dementia but this time is of my own making (I think?) Please let me take you back a few days in time and try to explain.
After coming back from my trip to Bolton, I could not see any reason whatsoever as to why I should be (Babysat) as I called it by a carer, twice a week and kicked up such a stir about it. This, as you can imagine caused some tension in the house. My argument is I am quite capable of looking after myself for a couple of hours a week whilst Elaine goes about doing what she likes. This is where the “INBETWEENER`s” comes into it. Yes I know I have Alzheimer’s, Yes I know I am a little forgetful at times, and Yes, I have accepted that I cannot go out unaccompanied as I would get knocked down within minutes., but even though I am the first to admit I am getting a little worse I really don’t think I have reached the stage where I need a complete stranger coming into my house and “Sitting” in with me.
I keep being told it’s so I can get used to having carers in with me as I will need them eventually in time, but that’s never going to happen, well, not for the moment anyway. So over the weekend we hit an IMPASS. The more I think about it, the more I feel guilty. I don’t and never will, or never have, stopped my angel doing whatever she wanted to do, but if I don’t have carers come in how does Elaine get the time to herself?
If I am being totally honest with everyone I really don’t understand the phrase “Having a break” as that would never come into my vocabulary when I talk about Elaine. I would NEVER want a break from her!! Surly I am not THAT BAD!! I don’t drink, smoke, womanise, I eat whatever`s put in front of me. I like to think I am a sociable guy and very easy to get on with, I don’t wander, I don’t get lost, how bad have i got to be before people need a break from me?
Please don’t judge me and please remember I have got Alzheimer’s and all this going through my head is something I have never experienced before. How many , just like me, and at this stage of the disease have sat there, head in hands, not knowing what to do or the best way around this? How many just like me would do anything in the world to make their loved one happy and yet feeling like their independence is being slowly and surly eaten away, kick back, at decisions being made for them. How many people like me have been awake most of the night because they think they have upset the one they love most and wouldn’t do that for the world, and yet just have because they can’t see what the problem is?
So here I sit, In-between a diagnosis of Alzheimer’s and slowly heading towards needing carer`s, but in my opinion, not quite yet, in other`s maybe so. As the frustration wells up inside of me and I want to scream we finally come to some sort of agreement. My care for two hours twice a week has been cancelled, just for the time being, as it has been deemed it’s not contributing whatsoever to my well being and especially my blood pressure, or Elaine’s either!! BUT! In place of that Elaine has been offered one or two full days a month to go wherever she wants to whilst I will hopefully have a member of the family with me.
I still don’t understand the “BREAK BIT” but it seems we have sat, talked, and worked an answer out for the time being at least, but please remember, as I always say, I am not the only person going through this, and there must be others who are just at that “In-Between stage and are as frustrated as Elaine and me. I hope this latest blog gores a little way to explaining how it feels to have this awful disease a little better for all to understand.
WHY IS NOTHING EVER SIMPLE!!!