The Very First Steps

Our company Timeless Presents started with the intention of focusing on designing products for late stage dementia, but from analytics we can see that many people visit us during the early stages of their own, or a loved ones diagnosis. We've been there, we know the many, many questions you have and we also know that the information you need can be hard to find, so this is for you.

So, to begin, my list of questions when Dad was diagnosed: How long will it take? How bad will it get? What can I do? What will happen next? And I'm afraid that the honest answer to most of those questions is - you can't tell. You have to wait and see, there's no timetable with dementia and the symptoms vary from person to person. I do hope that's not an unkind truth, but I do know that until I saw that truth for myself I couldn't accept our situation and start to live and be effective for us both in the moment. 

The first thing I have to share with you is to 'get your affairs in order' as people are inclined to say. What they mean, but don't want to say, is that matters of finance and legal accountability need to be dealt with as soon as humanly possible. With dementia there is a concept of mental capacity. That is: the person with dementia must satisfy the solicitor who is helping them arrange a Power of Attorney, or any legal matter, that they have the capacity to make that legally binding decision. So the longer it takes to start arranging these 'affairs' the more risk you take that, when you do try to do it, there might be some question over their capacity. In our own situation my Dad couldn't make a will, because he lacked the capacity at that stage. Thankfully we had arranged Power of Attorney earlier but were horrified to find out that if we hadn't, we could have lost the ability to do it at all.  I do know this is hard advice to hear, I am sorry to give it at a time when you must be dealing with so much else, but this is your very first priority, to protect yourself or your loved one as soon s you can because, as hard as it might be to hear (and for that I'm sorry) it won't be possible later on.

As we grow this community together we would love for you to share your positive stories and comments, so we can all learn what living well with dementia looks like.