Finding calm in the midst of a storm

IMG_4629Living with dementia is like always being in the middle of a storm, or a potential storm, with someone or something. Either we are struggling to know how to make a cup of coffee or get dressed, and wondering if we have taken our tablets or even what to do in the shower is what many of us face daily, and is what goes on behind closed doors, so when someone meets us in the street, or at an event, they rarely see the invisible disabilities, nor the struggle we have gone through to get there.They do not see the many laminated help sheets and reminders stuck all over my home, constant reminders of the things I can no longer do without some sort of prompt or support.

The greater challenge I have found is how to maintain positive and open relationships with others, especially others with dementia as we are almost all over emotional, struggle to fully understand or misinterpret, and almost all get upset and over react. Hell, we do it with our care partners and the rest of the world, so it is not unreasonable we would do it with each other.

A dear friend who supports her partner full time recently wrote about how hard it is getting for her physically and emotionally to manage the daily effort of loving and caring for someone who is changing so much, and who is not always rational, and is sometimes paranoid. And who does not always remember what she has done or said, so if it was something unintentionally hurtful, when one is still hurting, the other is in blissful ignorance of what has happened or why she would be hurt.  This adds to the challenges we face, and I suspect all any of us can do, is to do our best.

We do our best to forgive, to forget (yes, forget!), and to love each other more. That is my goal and dream, and as the days move forward I will keep offering olive branches to others who may feel I have wronged them. It is never intentional if I have, and that is all I can do, for now. Finding calm in the midst of a storm is bloody hard to do at the best of times, but add in cognitive disabilities, changed emotions, reactions, over reactions, misinterpretations, misunderstanding and all the other things caused by dementia, and its a nightmare!

12 thoughts on “Finding calm in the midst of a storm

  1. I can relate so much to this (still not formally diagnosed with dementia… but it’s suspected as we play the rule out game)… I don’t have a real sense of smell… So in the shower, unless I sing a song (either in my head or out loud) that goes something like this “I have shampooed my hair…. I have shampooed my hair” “I have conditioned my hair… I have conditioned my hair….” or “I have shaved my legs…..” Or “I washed my body……” Unless I say it in some way over and over again, I may not remember if I actually have done those things. I have gotten out of the shower incredibly wrinkled and late for heading off to work. Other times I have gotten out and then realized, once I see myself in the unfogged mirror, that I didn’t actually RINSE something out of my hair. I imagine that if I had a sense of smell I might get clues as to what I have done. This lack of sense of smell is why I have burned a grill cheese sandwich when making for my son…. not once… but twice or more…. all but to just throw it in the trash because it is black. I forget what I am doing…. I set the timer on the stove for a minute at a time but the timer tends to get tuned out. I try not to use the stove now unless I know I can be right there standing next to it paying attention. But yet I go to work…. and no one knows about the showering issues or the burned grill cheese or that I didn’t recognize the road I was on when I drove in to work even though I travel that road a minimum of twice daily. They don’t realize at work that…. as they are talking to me…. I have no clue of every having met them before…. I play the game of smiling and going along with the conversation as I try to find hints of who they are… are they wearing a badge? Is their name showing somewhere? They don’t see this. They don’t live it. My hubby and youngest child who lives at home sees some of this. They know. Others doubt me (including family). Tell me everyone forgets things. Tell me I am crazy for thinking I have a problem. Tell me it’s just stress. Tell me it’s just potential menopause finally deciding to hit me at my age (I’ve been having memory issues for a number of years now… but it’s now impacting where other’s get to occasionally witness the impact.) I’m just barely 54. My youngest is 9. I still am regular with no real signs of menopause. I’d be thrilled if this was just a menopause thing….or a thyroid thing (I take a low dose pill daily but my levels are checked regularly)…..I will continue to wishful think in those directions until I get some final and real diagnosis. For now…. I’m going the route of having found a doc who really takes me seriously and has decided to put me through various tests instead of just throwing me on a multitude of Alzheimer’s related medications. I appreciate the information and support found here as there is little available for those experiencing these things directly. If I pull up one more site on line for support for dementia and find it to be for care givers ONLY, I just might scream…. We need support. We need others to help us down this road.

    • That you for following my blog Karen, and for joining the conversation here. This site, and DAI is completely focused towards those of us living with dementia, and DAI now has a chat room for people going through the very traumatic and upsetting diagnostic process as well as for people with MCI. As per our email I will connect to our YouTube channel – there are lots of videos of people with den,enter speaking, plus quite a few professionals presenting as well. I’d strongly recommend you have a look, as well as looking at Teepa Snow’s youtube videos. Talk very soon xxx

  2. Thanks as always Kate for a very honest and helpful blog. Your writing is so helpful at this stage of our journey. Maureen is beginning to open up on feelings and her fears. I have to be very patient and let her share at her own speed.

  3. Thank you for this beautiful reflection Kate! Isn’t it true with every relationship – a constant exchange of olive branches.

  4. Hi kate
    When you are writing how you are I could swear you are a fly on the wall in my home.some days it takes for ever to get washed and dressed. Or making a sandwich or cup of tea walking back and forth to the fridge I’m sure I must walk a mile some days as I never seem to remember to get everything out in one go. But like you say people who know me don’t see this side of my life and disability. Frustration not being able to work things out or say the right thing. If people ask how I am I just say I’m fine because I’m sure that’d what they want to hear. I hide my problems well sometimes even from my husband because I don’t want him to have to do any more for me than what he does already. I know he would but I feel guilty as he is older than me and also has medical problems. Just keep on going as you inspire a lot of people even here in the UK xxxx

  5. It is truly a struggle, I am watching my FIL, who has been told he has a ‘mild ‘case of vascular dementia and at this stage has the cognitive ability to change and adapt, instead I have seen him hurt and smile at the outcome of some of his words. Whilst others struggle to say and do the right thing, he admits his diagnosis is an easy out to behave badly. The worst part despite having had his license taken away, it appears they are going to give it back, not bad people say but he drives a large 4WD has had 2 accidents within 3 years and one of them nearly killed my husband. My FIL still blames my husband for it. I look at my MIL and think she is managing until she can’t, we can only support and offer love.

  6. The words “behind closed doors” and “invisible disabilities” resonate with me and my memories of the path Gregory and I traveled. I identify strongly with what your friend who is supporting her partner is going through. What amazes me is that you, dear Kate, are able to identify what is going on with you and your mind. Often I was not able to do that for or with Gregory, I just reacted (overtly or covertly, emotionally or in action) to what I was experiencing or what I though he was experiencing. Keep writing my friend, your insights are helping so many more than you know!

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