Accepting dementia

What is going on? Such a lazy way to start a blog, yet that is how I feel, and that is what we are asking. What is going on? Is the dementia moving in the wrong direction again, or is it that we are travelling and my routines have been out of kilter? Well, those questions have led me to ponder the notion of acceptance, and caused me to wonder if it is ever possible to completely accept dementia, particularly as the goal posts keep changing. Life is bursting with both wonderful and difficult or sad events, and ultimately all we need to get through them is acceptance. Acceptance of ourselves, of others, of situations and events is what many of us forget to do. The sadness following a death of a loved one can override the ability to accept what has happened straight away, which is completely normal, as we must grieve our way through to acceptance. BUT, to heal, I believe we must accept. The last few days the symptoms of dementia have been increasing, and we have no idea why, or if the changes are here to stay. It could be the travelling which is constantly exposing me to new places and people, or the fact I have not been able to maintain my regime of holistic supporting activities and diet. My dear husband and I spent many hours last night crying our way through our talking, trying to help the other understand more fully each other’s worlds, without hurting each other. How is it possible to say to my husband who I love deeply, stop trying to ‘over’ protect me all the time, without offending him, and, when all he ever wants to do is keep me safe and love me. How is it possible for me not to feel offended or upset when he says, this holiday I am not having a good time, it is just too stressful. In our efforts to keep each other informed, it is almost impossible not to hurt each other. We know what we say to each other, and what we hear is not meant to hurt, but rather to inform and help. Critique is usually quite difficult to accept at any time, but right now, we are both feeling very vulnerable.

Since meeting each other, we have always said we wanted to travel the world together once our boys were up and running, and this time has come but living with dementia is making it difficult. My dear husband says he does not want to travel long distances or for extended periods now other than to attend conferences with me, or for short family holidays. We are not being defeatist or pessimists, merely accepting the reality of our new world, one of living with the increasing symptoms of dementia. We can still share, even though I have lost some insight and find it more difficult to see, let alone accept some of the things he tells me. We often ask ourselves, have we accepted dementia? Some of the time yes, but there are many moments when we are used to what is happening or the symptoms are not glowing in our faces, and we gallop straight back into denial! I am wobbling and teetering more each day, even occasionally falling right over, but still getting back up, pulling myself out of the dark crevices of dementia. It takes more effort to get up again, or to straighten my bow, but with help, it is still possible. The disabilities caused by dementia are currently still able to be negotiated with and managed in ways that allow me to function fully, and allow my husband and me to have a good life together. That is not to say we do not struggle with what is happening, but we did before dementia too, about other things. Everyone does, in their own ways. Accepting whatever it is that is happening to you, around you, or that effects you in some way is the best way to get on with the business of living. Whether we accept dementia or not, it is with us, and we have to find ways to live with it! And live we must to, at least until we die. When we accept that very simple fact, and focus on living in the very best way we can, we will have truly achieved one of the greatest goals of life.

12 thoughts on “Accepting dementia

  1. Kate-please remember that you are not offending your husband on purpose-it is because of dementia-not your fault-and please don’t take it personally-you are amazing and i know your husband is very proud of you as i am. I was in a similar situation to you regarding holidays(which you mentioned above)at christmas time. Although my Grandad is a wonderful, caring, gentle, kind and loving human being-i didn’t enjoy my trip to bay of islands at all in December because the holiday was basically based on him-not a holiday involving relaxing by the pool, doing nothing or fun things all day. It definetly is very hard travelling with someone who is ill-i found it incredibly draining travelling with Grandad-it was hard work. My Grandma has given up travelling now-as travelling is too difficult with someone with dementia-there brain has to work twice as much as my brain works to know where they are. I have heard that travelling afar with dementia can have negative impacts. 1-speeds up the detoriation. 2-makes the person more disorientated. Sometimes goals are unachieveable because of obstacles and curveballs that get in the way. Please rememver that your husband is very very very proud of you, as i am of you, Kate.

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  2. Pingback: Overlooking reality « Creating life with words – Inspiration, love and truth

  3. Hi my name is Kathy and my mum is in the early but fast developing vascular dementia…. I am having trouble accepting it and I can’t cope . Help me:(

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    • Hi Kathy, I suggest you contact your local Alzheimer’s office – they are the best place to start in helping you understand and accept what is happening. Most countries have this organisation, but ask your local doctor if you can’t find it. Blessings.

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  4. Thank you for sharing this, Kate. Your blog as a whole reflects the ups and downs you face, and allows us readers to have better insight into your journey. Especially so because you think so deeply and make an effort to express your ideas clearly. Dementia has never had a well-spoken advocate such as you. Reading your blog helps me understand so much better. Even if you completely stopped writing now (which I know you won’t), you have accomplished a great deal.
    I wish you peace and joy. Hugs.

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  5. Eh Kate.. NOW your talking my heart my physical stuggles and my emotional rollercaoster. Yours and Petes words and tears together have been as ours… for a long time “denial” and for me hidning behind the symptoms which rhen caused more ‘pain and strain on each other . Our day of beginning to face the changes and my dementia illness within me.. caused us both some heart wrenching times. during that adjustment. Now we live an Isolated lifestyle almost completely toghther. As I for a long time now CANNOT socialise in large busy envioroments more than four quiet enteractions at one time, comfortably. Cannot enter into cafes cynamas, concerts all those lovely social settings I once so enjoyed. Yes a different world were in as I view.
    Im in this world to enjoy it as I can.. But I dont feel apart of it anymore… We live arround the edges of it theough adjustments of my areas’ of dementia . That I understand that cuase me illness if I go against them. Our travel caused me intense fatigue and hightened my dementia symptons a morning ill in the Boston Hospital … and most of the time visiting Oscars family my days were spent in bed…. so I could spend a couple of happy evening hours with them. Cant do anymore than three hours socialising now .. I become agitiated totlally drained emotionally and physically…. so I couldnt understand and this is what made me angry when I heard others suggesting that their Dementia world had given them ‘gifts” of a better world in it… I miss my pass world my past friends with the lifestyle we shared back then that I cant enjoy now with them.
    The only positive I have during my journey towards that last train stop station.. Is that somewhow In my advocacy against Dementia towards improving community understanding and government awarness towards funding for research to find a “cure” and to workd with the
    advocacy commitee to ensure tha know one ever again will have to endure what my father suffered in the high security facility that my sister me with our dad endured and 14yrs later after that time my sister and I still have RAW feelings about that type of facility and my dread of ever having to ecperience it…. I so enjoyed your words today as I have only just today began to rise above the symptons fo illness that our travel caused us both Oscar as Peter has said the same as the stress he endured caring for me as coping amidst his own travel issues is a double whammy for our hubbies.. I dont think Oscar will attending any more conferences too far away again… I even had a AWOL Dementia issue at an airport … Just lost it during the security porcedures.. I was tired and no coping skills working left and “LOST the normaly past ability to function in logic a “stress” for us both but saddly Oscar wore that brunt… Were recovering and hve learned more how to live wiser and more practicall accepting the reality of this HORRIBLE disease that takes away our past enjoyed and admired persoanl charachteristics and ejoyed self worth and for me my funand inspiring personality… Now I dont like who I am and how I cannot “stop” the changes… Just work hard at remembering them and “hanging on to them” thanks girl do love and respect you and delighted to have you as new friend and future train traveller together in support with each other. “IF I havent offended you with my hearts grieves and thoughts”. xx

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    • Nothing much offends us dear Carol (and Oscar) our new friends, as what can really, after living with dementia. You are right, it is a horrible disease stealing who we were, our relationships and so many other things, but we have no choice to make the best of it do we, in our own ways. I so admire you for your advocacy and honesty, and meeting you both is one small gift of dementia for me. xx

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  6. Dear Kate,
    Your description of the effects of dementia are so valuable and powerful for us or for me anyway, to understand what it is like and how we can help you and others living with dementia to continue and get the best out of thier lives. Your openess about your wonderful relationship you have with Pete is awe inspiring to watch from the sides as your love grows in depth, bredth and understanding.
    love Valerie

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    • Lovely to hear from you Valerie, and your kind words. If blogging about this wild ride is helpful to you and others, then I am more than delighted and if this means someone else’s load may be lightened in any way at all, then that is just a blessing and bonus. I look forward to catching up when we get home, and hope your new job is going well. xx

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  7. Dearest Kate, I struggle to read this, I am concerned for both you and DH. I send you “big cyber hugs” during this stressful time. I hope as the trip draws to an end your progression stays as it is and not worsens. Stay safe, love each other, come home safely

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