Why plan for a dementia free future?

Yesterday's post brought responses in it's wake, mostly positive but some noticing that I seem to be planning for a future without Ash and with a question mark next to that.  No awful comments, no difficult statements, just a raised eyebrow here and there.  Some of those are outsiders looking in and this is where I think it's important to make it completely clear that, although I am doing just that, I don't have a date in mind, I'm not waiting with baited breath for this to end, I just like to know I have a future waiting for me and that knowledge and those plans are what keep me sane and on track.  Being with a husband/wife/life partner who is living with dementia is a lonely place.  I have amazing friends who keep me occupied, make me laugh and listen when (occasionally) my barriers come down but they're not Ash and he won't ever be there again to listen to me, to offer support or to give me a shoulder to lean against so I have to think for myself, plan for myself and give myself a life to look forward to.  I've always had a tendency to dream big but I'm also able to accept the realities of life so I may dream of, and plan for, a three month road trip around the USA but I know it's more likely to be two weeks in one place if I even get that far.  So I draw up my lists and I make my plans just in case; I add to them on a regular basis and at some time in the future I just might be able to start working my way through them but if not there was so much fun to be had in the planning that in some ways it won't really matter.  Interestingly, when dementia first entered our lives officially, I used to think of all the places we'd been together and think 'could I go back on my own?' (you may be unsurprised to hear that the answer was usually 'yes') but recently I've been talking to Jake about ways in which he can come over on a regular basis and stay with his dad so that I can have four days away every couple of months and I've decided to go to all the places in the country Ash never wanted to visit.  It will be my own adventure and just for me.


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Comments

Frank said…
I think you are very clear eyed in your outlook on your future. I agree with you. You must continue to plan your life. Looking at those things you always wanted to do, the places you wanted to visit are the low hanging fruit of your future. I think, after a while, you will begin to see new things and places that come from the you who never had to compromise. I too look into my future though with less certainty. Like everyone in a committed relationship we must share our life and often times take paths that were not our first chose. Those paths that were most interesting to us will be the ones we look at again.
Maya said…
Everything you post has a resonance with me and my situation as I have a 60 year old husband who was diagnosed 5 years ago.
I have to look into the future for some hope that I can have a life of some description : a life that is currently on hold.It is not being selfish to wish that a future might exist where I will be able to enjoy visiting places and friends without having to plan it like a military operation! Without such hope I don't know how I would be able to cope.
Jane said…
and when you've done all that military like planning you find it still hasn't been quite as good as you'd hoped but maybe next time will be better only it never is. am really looking forward to my trips away with no-one to please but myself and no-one to consider but me.
Gilly G said…
I think it's entirely appropriate to think of a life beyond the one we are living. I know from my perspective I feel as though I am existing and not living. Every moment I spend ensuring that my husband is happy, fed, clean and well looked after. I spend many hours sitting with him listening to the same music or films, but he is fairly content. The compromise is always going to be that I don't have the time and space to be me. I thought of a book title for the future ' will the real Jane, Frank or whoever please stand up'. We celebrate 30 years of marriage later this year and I know that I hold those vows close to my heart, but the person I married isn't here anymore. He has been replaced by someone who looks to me for everything and like the other day when his hand slipped out of mine at the top of an escalator he is almost like a child. Btw we took the lift when I had got up to the level where he left me behind. I know I have many years ahead of me and I know that I fear above all else the prospect of having to support someone else through Dementia and for that reason I have friends and family who are more than enough a support for me in the future to not need another life partner. I have always been quite happy with my own company and in the future I plan to do all sorts of voluntary work, so I won't be alone really. We didn't sign up for this, but the journey we are on has also made up very strong and resourceful people. I am not afraid to do the DIY or sort out the car, just as well really. I always said to my husband that I was a very low maintenance wife. Keep those inspirational posts coming Jane. Hugs to everyone out there.
Jane said…
I know that fear and think it's something all dementia survivors feel but, with my positive head on, I do think there are ways around it. We celebrate our 38th wedding anniversary this September and have been together since very young teenagers so I think that beyond the avoidance of dementia, in the future my strongest determination is to live completely independently; no compromises necessary, no discussions to be had on what to buy and what to do without, life is going to be about me. the rest of it will work itself out I'm sure.