Lately I haven’t felt like reading or writing anything much. Despite this temporary aversion to words, I have plodded in and out of other people’s blogs and/or Facebook posts and have begun copy/pasting bits of my own blog into a possible book about Anthony and Parkinson’s disease but the initial buzz of this latest project has abated to a low hum. I know that this is worthwhile so will continue but re-reading the bits and pieces of posts I have written over the last three years of our unwilling venture into the landscape of Parkinson’s disease and dementia seems to have rendered me wordless. I draw enormous encouragement and inspiration from other people’s words but have become sick and tired of my own wilting voice.
The strangest thing about my own silence has been in acknowledging other people’s silence, especially those with dementia with whom I interact at the nursing home in my new part-time job as ‘lifestyle assistant’. Initially (a few weeks ago) I accompanied the wheelchair walks with my loud voice – admiring flowers, pictures on walls, the automatic door, the delicious smells coming from the kitchen etc. But, over the last couple of days, I wheeled various women around the gardens of the nursing home property in silence – just listening to whatever they had to say or, if the person were unable to speak, I shut up too. The unbusy silence of these short journeys seemed somehow wrong at first but I now see how my silence allows whoever is in the wheelchair to smell the roses, see the pictures, hear the greetings of staff, touch the hands or shoulders of other residents, and converse with everyone we come across.
I have never loved a job as much as I love this job, but some of the lessons learned, via the different kinds of emotional suffering people with dementia endure, leave me speechless. Touch has become much more important than words and, even though I am a huggy person, hand massages aren’t really my forte but these really work in calming some people down.
Now that Anthony has entered this dementia phase of Parkinson’s, I am learning once again how to listen better, how to shut up, and how to be comfortable with silence. I really believe in this silence thing now but am not sure. I know that with Ants my silent presence in his room, or wheelchair walking around the grounds, frees him from the responsibility of conversation now that he has kind of lost track of language.
Anyway, perhaps, sometimes, silence IS golden.
jmgoyder 
Your final sentence is the last word on the subject.
Yes, I think so too now.
Sorry my last comment went before I had finished! I was going to say that I live on my own, not listening to the radio and really enjoy silence.
Thank you, Susan. I am now getting used to the silence inside this once vibrant household.
silence is golden”…I believe that too and we must learn to listen and be comfortable with silence. Nice post Julie!
Thanks Arlene!
I read these words and so many memories flood my mind – but this isn’t my story. There is a beauty in silence for those who have lost the connection to their confused vocabulary and voice. And yet Jules, you spend so much of your time in this silence, please make sure that you spend some time with family and friends – in the life that continues outside the lodge – where there are people who love your thoughts and need to hear them – it is important for you. And you my dear, are incredibly important – to your beloved Ants of course – but to so many others too.
It is almost as if you are here, doing this with me, Mimi – thank you!
In my heart, I am..
I’m pleased to hear you are continuing with the book as first hand knowledge cannot be beaten. I’m convinced that many will gain from the share. There are too many unknown nuances to every illness and your knowledge is second to none…. That a break though, it sounds like you need it… Sterkte!
What would I do without Sterkte and YOU! Many thanks bulldogxxxx
Silence is sometimes good, but sometimes for me uncomfortable; as if I don’t engage in conversation I may seem disinterested… but with the aged or those with dementia, I think you’re right that it’s good to let them have their moments of silence… who knows what exactly they think or dream…..
I too seem to have lost my voice as far a thoughts for blogging. My mind is having a hard time focusing. I do believe that because health issues are so intense right now, I just can’t think to clearly… both with my husband and I… ‘not serious … at least I don’t believe so…. just ongoing with not too much resolution yet… Anyway.. onward and upward we go…. Diane
I understand and am really grateful that you understand too. Thank you so much, Diane
Julie, I read this ‘knowing’ what you are describing … I has never stopped to put it in words. You couldn’t have written it any better. Many years ago, I worked in a nursing home …
Thank you GG!
I cannot begin to say how beautiful the sound of Silence is.
Not that there is ever complete silence.
There’s the faint rustling of leaves as the wind (or breeze) filters its way through the tree tops and the faint chirping of birds from time to time. I hear the faint murmur of traffic in the main road at the end of the street most days, but when there’s no voices or need to make conversation, the ‘silence’ is magic.
I imagine that early Dementia and/or Alzheimers patients need that reassuring sound of the human voice to keep them connected to the outside world and let them know they are not forgotten or alone.
But I also imagine there comes a time, when concentrating on conversation becomes a strain and energy draining. The human voice must sound like a foreign language of totally unrecognisable babble. I know because when deeply fatigued I’ve felt that constant drawl of conversation assaulting my senses and I’ve wished that well-meaning person would just shut up and be quiet.
There comes a time when just being in the presence of another living being is enough. Sharing the human presence and the sounds of nature can be very comforting and calming. I often see carers or family wheeling the elderly or disabled through the Botanic Gardens near my home and I sometimes look at the faces of the wheel bound, and the look of joy and calm on their faces is one of complete happiness.
The touch of a human hand through the rubble of earthquake damage, or the mangled remains of a serious car accident has kept many a human alive (until they’re rescued or cut free).
The healing power of touch is not used enough in this modern age.
Vicki, your words are so wise and somehow rhythmic – you KNOW this experience. I cannot thank you enough for your wisdom. You give me energy!
Sometimes silence is all a person needs – and the conforting presence of someone who cares. Even though Antony cannot express this, I am sure that he loves that you are with him even though there is no conversation.
Good to hear you are doing okay Julie.
I guess it is a day by day situation – thanks Colline xxx
yes, and how beautifully you’ve grown into your understanding and acceptance of all this.
I really am learning so much from these 10 beautiful women (the ones in the dementia wing).
Sounds like you’re learning so much in this job. Sometimes silence is good, and at other times, we need to speak our truth. Looks like your teetering on the balance – at any moment you could go either way. Follow your heart — it knows which way to go!
Teetering is the perfect word for it!
Silence used to scare me and I felt such pressure to fill it, but now, at least for the past two years, I have grown to really appreciate silence and how calming it actually is and beautiful as well. Hand massages are the best, I don’t particularly like massages but hand massages should be a mandatory daily ritual for everyone. I love them. 😀
It felt a bit strange and too intimate doing my first hand massage but I am getting used to it now.
wow! these are lessons we all need Julie. Thank you for teaching me to listen lovingly in the silence — and to listen through touch. How beautiful.
You always make me feel so great Louise!
I think touch is so much more important when we are older. As we age many words have been spoken through the years but when we suffer losses of loved ones a tender touch speaks so much louder than any simple words. You are a beautiful person and mean the world to me
I have learned so much from you Terry!
Julie, there is so much beauty in your words. I live with the motto of “less is more” because I’ve found the simplest things lead to peace. The only line I wish could be reframed above is: “I’m sick and tired of my own wilting voice.” Trust me, the harshness of your inner critic could be turned around by reframing that. The subconscious loves to act on words and that can even lead to feeling sick and tired! If your voice has wilted, it’s because you have been bombarded with daily reminders of your loss and love. Some people might run away and never visit a loved one in a demented condition. You are an angel; you’ve devoted years of your live to Anthony and to helping others. Here’s the truth – You’re sometimes discouraged but always manage to turn things around. I love what how you seem to see so many beautiful things during such a dark time in your life.
Thanks so much for that ‘inner critic’ tip Judy – thanks too for your wisdom and advice which I have taken on board xxxx
I too have not written and read a select few blogs. It is a silent scream my friend. Hang in there and lots of love
Thanks Tersia. I feel like maybe giving FBook a miss and just concentrate on blogging and reading blogs. I am not very organised! xxx
HUGS to you Julie. ❤
I kept a journal during a very difficult time in my life. Years later I found it, and read it again thinking it would show me how far I'd come and be a reason for celebrating. In truth, reading it brought me right back to the pain, so much so that I could smell what I smelled then, remember some conversations word-for-word. Reading it pulled sobbing and painful crying from me. That was years ago. I haven't read it again since.
Could it be that gathering material for a book is making you sad?
love and stuff ❤
Diana xo
I think that you have hit the nail on the head and re-reading some of the posts I wrote when we first had to say yes to the nursing home have broken my heart again and made me a bit numb. I will be careful from now on. Thank you for sharing what happened to you when you re-read your journal. Maybe I should start the proposed ‘book’ with funny, positive stuff?
Just do what’s right for you, including the timing for a book. Love & stuff, Diana ❤
You always say just the right thing Diana!
I think it is a brilliant idea of you writing about this in a book. I wish you the best of luck.
This is a brilliant post on the three types of silence that are happening for you at the moment; Anthony’s silence, the silence in your once busy home, and the silence you have decided to take upon yourself. There can be much pain and yet joy in this. I know that some people would advise you to seek out company etc. I know that is a good thing. However, I also think it is a good thing to come to terms with one’s aloneness and sorrow. I had forty years of the noisy comings and goings of my husband and children and I was shell-shocked when that world changed. After all the anger and grieving died down, I was still alone and I was still lonely. I thought the cure for that would be to seek out company but when I did that only made it worse because I was alone with lots of other people who were not alone. It highlighted the fact that my two-some was gone, and even in company I was still a one-some. I finally decided that I had to get over my loneliness by confronting my aloneness and embracing it. That is what I did and the best way I found to do that has been in silence. I now revel in my aloneness, it is unbelievable freedom as I could never have imagined. Yes, I do also get out and about, and spend lots of time with family. Yet I now crave when I can come home again to me and my silence.
Thanks so much Elizabeth for such a thought-provoking comment and pointing out the three types of silence! xxx
My first visit to you blog was an incredible experience. Your emotions come through so beautifully, I’m sure the writing is very cathartic for you. I do agree with the comment about making sure you connect with others as well though – life would be very bleak without connection outside of the “lodge” I would think. My very good friend went through this for 2 years and it was so very hard on her – much more so I think than on her husband after a while. You sound like a wonderful wife and mother – my heart goes out to you all.
What a beautiful comment. Thank you Tina!
I agree with my sister Susan.
This is a very touching post, Julie.
Thanks Tom
Yes there is nothing wrong with silence it can indeed be wonderful, knowing when to be silent and when not to be is the trick
Tricky!
What a great lesson, and reminder, to me Julie. Sometimes I need to remember that what I have to say really doesn’t have value. Not as much as what it is someone else may need.
xxx
This could be the first chapter of your book. Excellent.
Dunno – thanks Susie!
Silence, definitely golden. Keep writing, Jules. I’m in line to buy that book. ❤
Haha – my mum gave me a mini-kindle for my b’day so am gonna suss you out now!
I love how you’ve taken on this journey. To stop, to listen, to learn. He’s in wonderful care with a soul like yours. Much love to you.
I feel so bad not to be keeping up with your posts – thanks for this reassurance Eli!
Life gets busy! Always great to see you, and to get to your blog, too.
When things get busy around our house, my husband and I love to take off on Sundays for afternoon rides, and one of the things we love most about them, is the silence. We talk for about fifteen minutes about whatever we haven’t had a chance to get to, and then we enjoy a comfortable silence. But I’m guessing you’re great company either way–chatting or not.
Thanks for this!
Some silence is good, some bad. My mom’s dementia is worse, and she has been very ill, so physically she is weaker and less able to carry on a conversation. But she has always been a woman of words. With no teeth now (she lost them and the caregivers were not careful to not have them lost, wrapped up in napkins–argh) she is barely understandable, so folks only ask her yes or o questions. And that makes me sad because even as she is, she has more to try and say. And I am far away, and the silence of no contact is so hard.
My heart goes out to you but please be assured that nursing home care has improved, staff seem to be kinder than in the old days. There are two women in the ‘house’ where I work who have no teeth, but they are adored by staff.
It is just so hard not being there.
to look back at 3 years would be overwhelming for anyone. to acknowledge the changes you and your beloved men have gone through would make anyone fall silent. that is a lot to process. some of us have stood on the side lines and read/watched as you have moved through this quagmire. how you have managed to keep moving astounds me at times.
very simply put, you are my hero.
sending you love and big warm hugs my friend
Ditto +++++ Sandra. I have only just seen this comment. Your moral and wise support always tells me that everything will be okay – and you are absolutely right about both of our situations!
I need to practice more silence. You said it well.
a nursing facility can be a very sad place to be but you brighten up every room with or without words! I am sure of it.
I can relate to being wordless. I have had much difficulty in keeping up with the blogs here, preferring to contemplate the silence. I don’t think it’s necessarily a bad thing.