Dementia = Loneliness

Loneliness-quote-by-mother-teresaI am currently wrestling with a deep sense of loneliness. In my search for wisdom, I have just re-read a Wakley Prize Essay, Dr Ishani Kar-Purkayastha’s moving essay  An epidemic of loneliness and it was a timely reminder of the problems most recalcitrant to our research based and outcome-driven health care providers.

Loneliness involves both social and emotional components – aloneness and sadness . It relates to the subjective difference between people’s expectations of relationships and their social experience. It is a response to isolation of some kind, real or perhaps even imagined. I agree with Mother Theresa’s quote pictured here, likening loneliness and feeling unwanted to a most terrible poverty.

But as is happening more often, I digress… Below I have I quoted from An epidemic of loneliness:

“She lets out a forlorn noise that is neither laugh nor cry. “Doctor”, she asks, “can you give me a cure for loneliness?” Her courage takes my breath away.

I wish I could say yes. I wish I could prescribe her some antidepressants and be satisfied that I had done my best, but the truth is she’s not clinically depressed. It’s just that she has been left behind by a world that no longer revolves around her, not even the littlest bit of it.

There are probably thousands like her. Men and women who have lived a lot and loved a lot. Men and women who are not yet done with being ferocious and bright but for whom time now stands empty as they wait in homes full of silence; their only misunderstanding to have lived to an age when they are no longer coveted by a society addicted to youth.”

It takes my breath away, reminding me of the sadness of my loved ones who died in a nursing home, and of the desperate loneliness they must have felt in between our visits, and perhaps, even during visits. The tales of sadness and loneliness many of my elderly friends feel are poignant, and often bring tears to my eyes. In my experience, older people who live with a partner, have no idea and show little sympathy towards their peers living alone, facing old age and loneliness alone.

I am lucky enough to still have friends, but because of our ages, most of them are busy and working. Even having my husband give up work may not cure my loneliness, as it is bearing down on me as the symptoms of dementia take over more areas of my life. Often, not even joining a room full of my own friends would fill the gap; the reduced ability to fully and equally participate actually causes a deeper sense of loneliness.  Just like dementia, there is no cure.

This blog is not being written to evoke or elicit pity or sympathy, but to  help with understanding, for myself, and for others. I have been plagued the last couple of days with loneliness, enough even to stop me blogging. For me, social media and online support groups, and advocating for the human rights of people with dementia and the elderly, goes some way to fill the gap, but it does not fill them. Most of my days, I am alone with my pc and cat, no visitors, few phone calls and four walls.

No drivers license, challenges catching a bus, changes to cognition and memory, deteriorating maths, writing and language skills, changes to interpersonal relationships, lost relationships, reduced problem solving skills and many other changes due to dementia which all go towards increasing the sense of loneliness.

I cannot even begin to imagine what it would be like if I lived alone; at least I have an amazing husband who comes home every night, and is with me on weekends. And two wonderful children, who phone or visit regularly.

It’s not really possible to understand the added loneliness of living alone, even when I am home alone most days, as in the back of my mind, I know someone I love is coming home later in the day. I’ve written poems about loneliness and on being alone and a blog called Loneliness, dementia and dying but no matter how often I write about it, I always feel there is so much more…

45 thoughts on “Dementia = Loneliness

  1. Yes, and I know that feeling of living alone. I am that person: no husband, no children, no family. Friends, yes, but that isn’t the same as a life partner or a care partner or that kind of deep connection. On the plus side, there is the gift of understanding and compassion engendered by this element of my destiny. And of course, things could always be worse 😉 In the whole scheme of things, loneliness is a small burden for me to bear.

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  4. Sad. Over 5 Billion ppl within 10,000 miles of one another and loneliness is still such a problem.
    There with you in terms of vocation.
    Loneliness is just nature’s way of saying you’re all alone, I guess.
    God help us all.

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  6. Kate, as always, you describe so richly your experience and you capture the essence of loneliness such that I am deeply feeling for you. I trust that, as with most things in life, this feeling too will roll on and make room for another, and all the while you will share your insights and wisdom generously, allowing us all to share in the learning and the journey with you. I am thinking of you Kate. x

    • Thank you for your wisdom and support… as you say, the feelings roll on and make room for others. Every day it is for most people, a bit of a roller coaster ride of highs, lows and in betweens. Pete and I were talking about the loneliness earlier, and it is a lot to do with my inner world shrinking… it’s a very strange phenomena watching myself disappear, almost makes me want the final stage some days, or at least the moment when hopefully I might not have as much insight…

      • Kate, should the day come that you have less insight, rest assured you will be surrounded by ‘a cast of thousands’ whom you’ve touched and educated, globally, through the sharing of your talent, drive and wonderful insights. As your inner world feels as though it’s shrinking, the respect for your incredible ‘spunk’ grows and blossoms exponentially. You are one inspiring lady! x

    • Kate, before I met you, the day I met Denise 2 1/2 years ago, I listened to an amazing research report from Alz Aus NSW on PLWD living alone. That cemented everything for me, right there & then.

      Our existential loneliness is something else.

      We choose how to fill our days. We could be more “together” if we so decide.
      Like yours, many of my friends still work so I need to consider their schedules – I can’t “just call”.

      Please know that you’ll never be “stuck alone” if you want it otherwise. xx

  7. Oh Kate, I guessed that maybe all was not well with you these past few days. For every few days of loneliness there will be some wonderful ones in between that you must hang on to. I wish I could be there to pop in and chat. Please don’t despair but look around the corner 🙂 Always rooting for you xx

  8. Hello, I too have felt and heard from others of a form of existential loneliness that comes with the words “You have dementia.” We know that a mindful separation is imminent and we feel it coming on with each new symptom or evidence thereof. Others look at us from further and further afar as in their own minds and hearts we a floating away from them.We turn inward and for most of us we are lonely inside as we become more lonely outside. Perhaps we should have been more inwardly satisfied and happy, but this is not the time to cry over spilt opportunities. We must find ourselves, however fleeting we may be even to ourselves. We must learn to honor and enjoy ourselves. With outward reinforcement of our self esteem being more misplaced and less in sheer volume we are driven into the existential void everyone lives in, but manages to pay little attention to it. We lack the wherewithal to create opportunities to lose ourselves in others, in other moments, in other’s moments, and so we sink deeper into our own confusing selves.

    I feel like I know where you are because I too am there too, and the more buzzing around me by others there is the more I realize I am more and more alone. It’s not that I don’t want to let it in, its that I don’t trust myself and I don’t trust it. I’m not sure why I don’t trust others to help me fill myself. I did previous to the diagnosis. I know why I don’t trust myself, because I don’t have the focus, the depth of thought, the ability to hold ideas until I feel them and can hold on to them.

    And when I walk into assisted living communities, and especially dementia units and I hear and feel the silence, the lack of vibrancy, the absence of life sounds/sights/smells it is more and more scary to me because here is where I will be – even in my own home – somewhere down my road.

    I turn to others like you who are truly kindred spirits, and I feel/share your joys and sorrows. I especially appreciate folks like you who still make an effort to self-explore and self-disclose. We need to do more of that, and we need others to support these efforts towards a healthy end. Most folks want us to come back into their worlds, don’t appreciate ours, and/or just don’t know what to do so they become withdrawn/sympathetic/filled with grief.

    I wish I knew some pithy 10 word saying to cheer you up, to instill hope for your future in you. But I don’t. We are truly on a road less traveled, and to my mind must make the best we can of it.

    Your friend, Richard

  9. Only just read this, Kate. In Scotland we call it “a sair fecht” when life is a struggle. The combination of pain and pushing against something seems right somehow. Lots of love, Alison x

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  11. I am so sorry to hear about your loneliness. On one level, there are so many of us living your experience with you as you so honestly share it with us; on another level, only you can know how it feels to experience the isolation that comes with your condition. I am constantly in awe of your eloquence and honesty. Keep going; what you are doing means a lot to a huge number of people.

    • Lovely to hear from you Vanessa… I feel your presence, and that of my online community strongly, but it doesn’t always take away the deep sense of loneliness… it definitely helps and you are all awesome. thank you.

  12. You are so insightful, Kate, and I thank you for sharing! I treasure you and how you share your wisdom with us. Thank you!

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    • 100% agree with you Tony… I just ended up expressing mine yesterday, therapeutic for me, and perhaps for others… those of you (my online friends) who comment and help me find other ways to view things, have almost become my Narrative Therapists! Please… no need to send me a bill!!

  14. Kate, I think that what you’ve said today is totally universal and it’s how I feel regularly. I’m sorry that you’ve felt so bad as to stop doing the things you love like your blog 😦

    I’ve felt really lonely walking around a crowded shopping centre ……. it happened soon after my cancer treatment finished and I still remember it (which in itself is amazing)

    I’ve lived alone for about 6 months while being sick and it was terrible. The kind where you wonder how long would you be dead for before someone noticed that you were dead …… know what I mean?

    I’ve felt and still feel lonely in my diagnosis as i’ve never met anybody with my diagnosis and all the problems that I have ……. so I just join groups for the different individual symptoms.

    And I feel lonely having lost about 98% of my friends over the past 17 years. I’ve got about 4 friends that I see about once a year (and who I can never get on the telephone) and 1 friend who I see every 3 months and we email etc. So I’ve only really got 1 friend now. And all of this happened because I’m too unwell to go out much, if at all. Plus many friends have gotten married and had kids and stopped calling back or seeing me etc.

    Loneliness is a cause of great sadness and unhappiness for me – it happens multiiple times a week. And unfortunately there’s nothing I can do about it except try to change my mindset.

    I know this doesn’t help you Kate, but you’re not alone.

    PS – I noticed that you didn’t have any blog posts and was beginning to worry …… take care ❤

    • You are right my friend… many other things cause deep loneliness, like other chronic illnesses, homelessness, depression and other mental illness… thank you for your concern and love. I hope your world is not too lonely either… xox

  15. Blessings Kate….
    Loneliness is not an easy companion to share life with. I have always been so grateful for the fact I live alone well. It’s been well over 20 years now! Yikes….Time flies. The simple things that entertain me and keep me company and busy are probably far more difficult to attain with dementia? Reading, cooking, gardening, writing etc…They all keep my hours busy and time zooming by. But, even then I too have my moments where I long to hear a real voice and not the music, I long to gut laugh with a friend until the tears fall, I ache to share something marvelous with someone else…It’s a give and take tug of war I live everyday. I know the thief of dementia must take away more and more of your ability to entertain yourself. I wish I had answers for you. All we can do is accept these moments we feel alone, allow the pain to pass through us and carry hope that tomorrow is always another day. If we fight it it pulls us down further, so accept this part of who you are and love her just a little bit more. There is a lot to be said for the fact that your writing ability remains intact, sharp and always captures the heart. You are still very much with us my friend…Love you….VK xxoo

    • Thanks VK… I too loved living alone, and loved my own company, but this is not what I’m talking about… it is the deep loneliness of what I call my unseen disappearing world.. and the four walls that has brought with it. As you know, I stay as busy as a beaver to remain as connected as is possible… love you too my friend xox

  16. Thank you Kate, this gives such insight into the completeness of living with dementia. Loneliness is such a desperate and isolating feeling and experience, which for me I can only liken in a very small way to my transition to full time study. We are human beings and need that connection, purpose and role. It’s so interesting that to us ‘twitter folk’ you are a constant, wonderful presence and part of our community but that is such a small part.

  17. Wow. Just wow. This is a really raw and moving post Kate. Each time I read one of your posts I feel I have gained new insights and understanding. Thank you.

  18. Couldn’t agree more with thesevas. If you think your writing & language skills are deteriorating, Kate. God help the rest of us. Good luck my friend. x

    • Thanks Pippa… I guess what you cannot see from reading my blog, is the struggle and effort that goes into it. The analogy of the Swan on the lake, calm on the surface, paddling like crazy below describes it well; my ability to paddle is becoming more difficult.xox

  19. This is a really moving piece Kate and I can hear in your story you feel your skills are deteriorating but the eloquence and vulnerability of your writing is so heart moving that skills alone cannot evoke. Thank you for being here.

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