What gets you through all this?

When you share your life with dementia it's very difficult to see what's ahead.  In fact everyone tells you that the best way of dealing with it all is to just accept what's happening and live in the moment and I've tried that but with limited success.  Telling myself life is ok right now works in the short term but to be perfectly blunt my life is unlikely to end when Ash's does so how do I prepare for that eventuality without wishing away every last minute with him.  Everyone needs something good to look forward to, a goal to aim for and living in the moment doesn't help you do that it just helps you to pass the time.  None of this is his fault or mine so I do my very best to make sure we're enjoying ourselves within the limitations of our life just now but selfishly I feel there must be more than this so here's what I've come up with.  I've decided that my life is on 'pause'.  I used to think it was on hold only that seems so definite and removes an awful lot of the light that I'll need later on but to feel it's on 'pause' has to me made all the difference.  I'm being a realist when I say that there are things I want to do with my life that I know, without doubt, Ash won't be a part of; there's no recovering from dementia there is only managing it as best I can so I've begun tentatively to plan for the future.  These plans are fuzzy round the edges, they're not firm and there certainly isn't any sort of date to them but I find them comforting and they give me back some hope.  Other people deal with this situation in their own way and I'm sure some will be horrified with what I've just written but what I want you to know is that, if this is you, if you're in my position, you can only do what suits you, what gets you through this.  Everyone will have their saving grace, the thing that saves their sanity amongst all the chaos but if you find a way that helps then just know that's ok.  And if you're not in this situation but know someone who is then please don't judge them.  We're all doing the best we can and you will never know what we're going through.
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Comments

Frank said…
Your article this morning is perfectly timed for me. I wonder how bad it will get before it begins to get better. I struggle now with finding a balance between what I should and must be doing and what she should and can be doing. I wonder if I'm being selfish or is she being selfish. I'm in the very early stage. I'm not even sure there is a concrete memory problem or just common poor behavior, such as rudeness, hatefulness, self doubt, etc. How bad does it have to get before someone of some authority concludes there is a problem? I guess no one wants to take the first step in declaring a spouse has a problem, either mental or personality.
Jane said…
If you have dementia in your life Frank the first thing to remember is that she isn't being selfish. she really can't help it and the only one who can make the changes is you. just wondered if you've read 'Contented Dementia' by Oliver James? if you haven't then it's the best place to start to get your head around all this. feel free to email me if you'd like to at memoryfortwo@gmail.com.
Karen said…
I have started to think that my husband will be alive for x number of days. In my Christian belief I believe that God has planned the date of our deaths. Therefore each good day we have actually means one day in the time he has left won’t be a bad day. I am also trying to decide what I might do later when he is gone but then I have always been a planner. It is a weird existence. Sometimes I feel like I am living in a time warp.
Jane said…
I too have always been a planner and have found that once I have a plan I can tweak it as I need to but it gives me a focus. It also helps me in accepting what's happening to us.
Anonymous said…
I don't feel that I have a future, only this, day after day.8
Jane said…
I know that feeling but there is a future for all of us we just need to work out what we want out of life and then work out how to get there however long it takes.