They say time is a great healer, I am not so sure. After
five years of caring for my mum and the journey we faced towards the end I
wonder if the concept of recovery can ever truly apply to me.
The life of a carer can be a lonely one. In my case, our
journey was characterised by much isolation and loneliness, even despite
all of the activity of my awareness campaign. I often wonder what happens to
the broken hearted? What happens to people who have cared for a loved for much
longer than I did? How do carers fit back in?
If it wasn’t for the on-going work I do which soaks up my
time and energy and the kindness of people who support my campaign then there
would be nothing.
Often we lose friends the longer we care and when we lose a
loved one we also lose part of the direction and purpose of our lives. As the
caring journey progressed, we lost contact with everyone apart from my mum’s
sister and family and one or two friends. My mum was also my best pal and the
loneliness and isolation I experienced at the time has only got worse since her
passing. I am lucky in many ways for the kindness to my campaign but as lonely
as I feel when I walk in this house I feel for others who will have no one at
all.
I want to challenge this as part of my campaign. We can’t
cure dementia as of yet, but we can address loneliness and isolation - a
tragedy that we as a society can all help fix .If you know someone who might
need a friend who is lost and alone ,you can change that. It does not take
strategies or policies just a bit of time and thought.
But for the kindness of people who support this campaign I would have little. I long for the day we should not need a campaign to take away loneliness
But for the kindness of people who support this campaign I would have little. I long for the day we should not need a campaign to take away loneliness
Tommy
Tommy what a beautifully written and thought provoking post.
ReplyDeleteYou speak for many carers who live in isolation and as you say, it's how they are affected - and who they are - after the loved one passes away or goes into residential care. Just how are they supposed to pick up the pieces after years of having hardly any social interaction with the outside world. Physically and emotionally drained, with a headful of sad memories, it must be hard going.
Thank you for sharing such a moving post which will resonate with so many people.
Hiya Tommy maybe its time for you to Greive ,take some time to yourself ,what you are doing is Admiral to say the least ,but maybe its your time to take time out .wish you all the best T x
ReplyDeleteThis reminds me of my time with clinical depression. Although it is now under control, the years I had it meant I lost some friends and was unable to work. Even now, I am a different person with fewer social skills. Having said that I'm sure I have learnt other things along the way. I have a relative with early onset dementia who is in a care home. I miss her dreadfully. My own contribution to public awareness takes the form of a novel which I am writing. We can only give according to our gifts.
ReplyDeleteTommy... I was my mom's caregiver for 5 years. She had Lewy Bodies Dementia. Like you, I lost touch with people, mostly because people couldn't relate to me and my caregiving responsibilities.
ReplyDeleteMy mom passed on Valentine's Day last year, we just celebrated her 1 year anniversary of being free from the illnesses of her life.
Time is helping me. It was hard to go from full time caregiver to no job. It was a bizarre feeling to not have to do anything for my mom. Caring for my mom became my identity.
Valentine's Day we celebrated the 1 yr anniversary of my mom's passing. I miss seeing her but I love that I can close my eyes and still feel her presence... she will always be in my heart.
Time does go on, but the love we shared with our moms is eternal.... we are fortunate and forever blessed.
Tommy, I ask myself the same question every day: who will I be in 5 years time? Hopefully still healthy enough to pick up the other threads of my life and do something about inadequate training of careworkers (I was a vocational ed consultant before Veda's diagnosis). We caregivers/supporters have to look out for one another as we go through this and beyond.
ReplyDeleteI love your work -come to Oz one day?
Lynda (@YODsupporter) - with hugs.
I have over the last two weeks sat at my Dads bedside in a busy bustling ward. I have been in many meetings with well meaning professionals. I have driven around several nursing homes only to struggle to find 'perfection'. All of these means I have talked non stop to people. But I have felt completely lonely. Why? It's because those along the way are just one part of the story and will fade away when their 'role' is over. The biggest differences to me recently was a healthcare who noticed how pale I looked and went out on her break to buy me a sandwich and a drink. Also the staff member who walked past, stopped and hugged me without having to say a word. My 'role' will never be over and I suspect it will continue even when my Dad is at eternal peace. Why is that role now forever? Because I will always be a daughter and love never ends. Also because I want to help Tommy to change how society thinks and how we reach out to each other. Tommy you are my hero, a pal and I am always here for you.
ReplyDeleteThis morning, on Tommy's mum's 4th anniversary, I forwarded this videoclip on Facebook, though I was unable to listen as my computer was playing up. Just watched it now with eyes filling up. Powerful, powerful, powerful. Dementia is not going anywhere in a hurry. We must face up to it and people like Tommy, help us to do all we can to do that. And what can we all do in the face of this most cruel and challenging disease(s) that takes away the mind and person? Love, Love and love some more. Thanks Tommy and all who work with and support people living with dementia. You are immense.
ReplyDeleteJimmy (Lancashire Memories)