When having dementia gets too hard

Image source: Sarah Yeates

Image source: Sarah Yeates

Today is one of those days I feel like hiding under the blankets all day, although where I live, that would be a tad warm as it’s very hot here this summer! Anyway, I suspect, sweat droplets would take over from tear droplets eventually and it will all be ok! But it doesn’t feel ok just now…

How do we negotiate a secure footing, in our world that is always moving and full of confusion, misunderstandings and such constant change in functional ability due to dementia? It needs patience and love, and a lot of bloody hard work. How can asking one simple question turn out so badly? I must get better at managing situations and problems, and find ways to deal with things so they don’t backfire and hurt me.

I’m not feeling strong today, and need time to sit and ponder if this global advocacy work is all worth it. I had always believed a collective voice was far more powerful and effective than individuals trying to make big change to global problems, but perhaps I am wrong. I must refocus o what the goals are, what the vision is for the 47+ million people with dementia and the person who is being signalled every 3.2 seconds somewhere in the world. We must be stronger for them, and the collective voice must not only grow it cannot fail. Onwards and upwards, through the fog together, is the only way forward.

So to remind myself of some of the disabilities of living with dementia, I must remember that our emotional folders are not always working, our words and actions can be misinterpreted, we can misinterpret others words or actions, we have much more difficulty dealing with conflict, we are sometimes happy when we should be sad, and vice versa, we can expect things yet no longer know how to ask for them, we get lonely as we miss those people who have disappeared from our lives, and although we can’t change it, it makes us sad. The grief and loss of dementia never, no not ever, goes away.

We have to wake up every day knowing that some other function or memory might be added, lost, or perhaps has completely disappeared, or some other ability that yesterday was intact is now impaired.

We worry that maybe something we did or said has been taken the wrong way and hurt someone, or that their reaction will hurt us. It is not as easy to deal with this stuff when your thinking has changed so much. And when, not if this does happen we have less ability to deal with it emotionally, hence my feelings today, and why I had to write about it, as my blog really is my free therapist. Half the time, we may not even be aware of some of the changes, especially as dementia progresses. I know now, that my husband notices many things that I do not.

Dementia is a global problem, and great change is desperately needed, not just for a cure, but for improving the care and outcomes for those of us living with it. I will just have to hang in there today, and remember one of my favourite quotes, which usually gets me through.

Never doubt that a small group of thoughtful committed citizens can change the world – indeed it is the only thing that ever does.

Margaret Meade

29 thoughts on “When having dementia gets too hard

  1. Pingback: #LivingBeyondDementia – Living Beyond Dementia™

  2. Hey there doll. No revolution ever happened fast. It IS all worth it…it won’t end when you or me or others do. I really doubt either of us will see out another 20 years, eh?
    So please don’t ask more of yourself than you enjoy and can sustain (I tell myself this at least weekly BTW).
    We have but one life Kate & we don’t owe anything to anyone.
    Please join me in putting “goals”aside, long enough to do a “salute to the sun” each morning. xx

  3. I’m so SO sorry that you’re feeling so bad today … I wish I could be there to give you a big hug and hear your worries ….. I hope it improved durinhg the day. I’ve tried to see how the Twitter event went tonight, but unfortunately I don’t understand Twitter and can’t see any conversation on your page. Hope it went well 🙂

  4. Kate my dear friend,

    We all have days that seem harder than others, which make us question ourselves and in which we feel like hiding under the covers.

    For you, living with dementia, life becomes a matrix of difficulties, and the journey, I am sure, so much more disheartening at times.

    But you are the voice, the inspiration and the strength – you show us how its done, and you keep moving forward when others would give up. You are a brave leader and for that we are grateful.

    If you need us to support you, just ask, because there is no reason you have to do this alone. We are here for you, as you are for so many. Take heart and keep smiling babe.

    “What do we live for if not to make the world a bit better for each other.” George Eliot.

    Leah.xx

  5. I wish we were nearer to each other. I’d love to just sit with you on a dock over looking some water or under a shade tree feeling a gentle breeze…and let the emotions pass. You are a beautiful person, and I am sorry for misunderstanding…life happens and we all trip sometimes, and things hurt sometimes. Sometimes hugs can say more than words. ((Hugs)). Hang in there.

  6. I feel terrible I missed you this week. sending *cyber hugs* not as good as real ones but heartfelt all the same xxx

  7. Never doubt, not even for a second, that what you are doing is valuable. You are making a difference, with every blog post, every info share and every time you speak about living with dementia. XX

  8. Thanks for sharing your thoughts and fears Kate and allowing us insight into living with dementia. Sometimes we don’t appreciate the small subtle changes. Thank you that you are an advocate and one small voice joined with others will make a big difference X

  9. Kate, you are amazing and such a help to those with dementia and those of us that learn from you everytime you speak! Days like this it’s ok to just let your emotions do what they need to do! Although I can’t truly know what you are feeling, the grieving is part of the process. Allow yourself to just be! And know there are so many of us that love you and admire what you share with us!! Thanks for all you do!

  10. I feel with you today. Maybe this quote from Oliver Sacks’ “Gratitude” will help: “Over the last few days, I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection to all its parts. This does not mean I am finished with life. On the contrary, I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight. This will involve audacity, clarity, and plain speaking; trying to straighten my accounts with the world. But there will be time, too, for some fun (and even some silliness, as well!) I feel a sudden clear focus and perspective. There is no time for anything inessential. I must focus on myself, my work, and my friends. I shall no longer look at the NewsHour every night. I call no longer pay any attention to politics or arguments about global warming. This is not indifference but detachment ― I still care deeply about the Middle East, about global warming, about growing inequality, but these are no longer my business; they belong to the future. Kate, sending my love.

  11. Bless you. A bad day for you. You will dust yourself down take huge deep breath.and back to it. We are waiting for your posts. But even if you decide to take time out. Sometimes as carer for Steve I shut down to recharge. I get very envious at holiday times ie Xmas and Easter. Just feel like locking doors till its all over. We don’t exchange presents. As Steve has never in 5 years understood that he is ill. Or how to unwrap a present is beyond him. Xx but we carry on. As in any one day he always makes me laugh.

  12. well done Kate. and we carers feel the same. nobody’s thinking and response is perfect. one of the things dementia may be giving us is a recognition that human reason and emotion and relationships ARE fallible — whether or not we have a diagnosis

The only thing missing in this global conversation is YOUR voice... Thank you.

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