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Club Inspire

Member of the Month: October 2014

Read a bit about or Member of the Month for October 2014, Ronnie Lomax:

Clipboard01 "I have Vascular Dementia.

As you can imagine the effects and devastation being at an early age I was (40). Most people consider  it being an illness in a more mature aged person.

Younger Dementia is not widely known as it is considered an older aged illness and yet younger people in their thirties, forties and fifties are Diagnosed with Dementia.

Life has many challenges, mine has more than you could perhaps imagine.

When obtaining a diagnosis and then trying to access age-appropriate services, it can be a bit of a lottery and in many cases can just depend on your post code. I have found that 99% of services for this illness are based on models towards
the older age care services or the “recovery model” and Younger People with Dementia as a minority group are lost in the system, because no one knows where to put us

“We feel that we are the forgotten ones”.

I attend a day care centre where we are supported by staff and meet other service users who all have Dementia, it gives us a chance to support each other. We play games , walk around the garden, paint and craft work, and listen to music. The staff do what they can with their limited resources.

Working on behalf of younger people who have a diagnosis of dementia, I am trying to improve their lot. What might surprise many onlookers that each of our members has a diagnosis of some form of dementia. The need to keep our minds active becomes more and more important, not to be wrapped in cotton wool by the people who love us or are trying to help us. Who are we, what makes you “you” it’s your memories and life experience, relationships etc sadly in time dementia will take this away “bits at a time”. At which point we won’t care how much cotton wool you use.

Let’s live for the moment we're in!

Dementia affects people in different ways and each person will find their own approach in time to dealing with the changes that occur. (And it is not going to happen overnight) it could take a long time and in some cases they never come to terms with their condition.

With the support of Crafter's Companion it has allowed people to express themselves in paper craft & art. Crafter's Companion has supported the Younger Onset Dementia Service based in Manchester, 70 Daisy Bank Road, Victoria Park, Manchester M14 5QN (telephone: 0161 882 2171) for Christmas 2013 & 2014 allowing users at the Day Centre to make Christmas cards.

I am trying at the moment to support the service as much as I can, whilst I can. I am looking for support for a Printer/scanner and laptop so people could make their own scrapbook/memory book and for printing onto card.

In 2005 I wrote a poem to express feeling and putting into words what I and others were going through:

This passage of life you cannot control.
Some days are good, Some days are bad.
This invisible illness is so sad.

So look at life and you will see, how it can change both you and me.
Struggling to capture the present For my future
Had a thought and then it’s gone, My mental camera will not stay on.

The lights are on, but no one’s at home, The family all here, but you feel, so alone.
Woke up this morning and all that I could see was a blue and grey mist in front of me
Waiting, hoping pictures will stay, to stop Sands of time slowly trickling away

So Theft of thoughts and the right words to say
Many past and present Memories have gone away

So grasp our lives with both hands and educate other people to understand.

The Forgotten by Ronnie Lomax (2005)

9 thoughts on “Member of the Month: October 2014”

  • ann brown

    my husband has just been told he has vascular dementia, reading your story has put thing were I can now help him I think, its having no car now he is mad about he loves his driving he will be 68 in November. glad I read your story

    Reply
    • Ronnie Lomax

      Hello Ann,

      I hope you and your husband are well, It come home hard on you when you are told you can no longer drive "it hit home" that you losing more and more of your independence and ability to do things, which you have done a good part of your life. The youngest in the UK diagnosed with dementia was 8 years old.

      I hope you are getting all the support you can, and try to do the same thing each day that you have always done.

      Why not get your husband involved and make a scrapbook and make it fun of past memories, photos, friends and family even songs, you could add to the book a CD of his favourite music.

      I wish you well.
      Ronnie

      Reply
  • Jacqueline Metcalfe
    Jacqueline Metcalfe 3rd October 2014 at 7:01 pm

    Hi Ronnie

    I also have early onset vascular dementia too caused by TIA's (mini strokes - I was finally diagnosed in February this year just days after turning 42). I have Ebsteins Anomaly (congenital damaged tricuspid heart valve - undiagnosed until only a few years ago) resulting in terminal chronic secondary heart failure, Underactive Thryroid, Auto-immune disorders - Rheumatoid Arthritis and Relapsing Polycondritis.
    When you say about 'us' being the 'forgotten ones' I agree totally, where I am there's nothing and I can't drive anymore and have no family to help. I feel so sad, lonely, isolated at times, but I muddle on, Vasc. Dementia is much much more than loss of memory. I have good days and bad days, lately its becoming more bad than good as all I've wanted to do is sleep and I get alot of pain; I have been to hospital today and had yet another scan, its been a very long day as the hospital I go to is quite a trek and I am now shattered and finding it even harder to read, concentrate, take in and understand your member of the month post (you'll understand what I mean when I say that), I only nipped on quickly to see if the new Spectrum Noir Aqua Tints were available here yet (so so sooooooo excited about them, they are just delicious, I cant wait to give them a test drive on clay!!!!) ... crafting and art keeps me occupied, sane and on a pretty even keel, without it I would definitely give up I'm sure. I will pop back tomorrow when I am less tired and I'm hopefully more refreshed and able to read (take in) your post again (must put post-it note on screen of laptop to remind me! lol) as I am very interested in what you have to say, as you are the first person my age range I have come across that also has Vascular Dementia.
    Wishing you all the very best .... Jacqueline :-)

    Reply
    • Ronnie Lomax

      Hi Jacqueline,

      I hope all is well with you, and that you have taken the time to rest, It true there are many day when you fell low and unwell I call it " the lights are on but no one at Home days".

      I fully agree with your comment regarding crafting "How crafting and art keeps you occupied, sane and on a pretty even keel".

      I wish to thank you for your reply, when you feel ready have a read of my poem each line express a feeling with Dementia

      With Kind Regard to You!
      Ronnie

      Reply
  • Mary Pearne

    Dear Ronnie
    I read your letter with great interest, may you carry on finding crafting a help to you. Thank you Crafters Companion for posting Ronnie;s letter., so many people push this illness under the carpet Love and prayers to all suffers and their familes.
    from
    Mary Pearne
    xxx

    Reply
    • Ronnie

      Dear Mary
      Thank you kindly for your reply and wish to join you in Thanking Crafters Companion for there posting and support.
      Thank You
      Ronnie

      Reply
    • Ronnie

      Thank you for your kind reply and wish to join you in thanking Crafters Companion for posting and there support
      Thank You all
      Ronnie

      Reply
  • jeanscott

    I have just read all your letters and it affected me badly I've just lost my husband in June of this year he too had cardio vascular dementia. He was diagnosed four years ago by then quite a lot of damage had been to his brain and it wasn't long before he had to be admitted into a nursing care home quite a distance from where we lived and I cant drive so visiting was difficult for me. Unfortunately unbeknown to us he had had it a number of years. You can imagine not knowing why he was saying and doing things which were alien to him and to us. It has been a very distressing period for me and our family not knowing what was happening to him and not letting us try to help him. I completely agree with your letters the loneliness affects everyone around them. I cannot fault the staff of the nursing home in any way they were absolutely brilliant and so caring towards the residents and the relatives and friends when they visited their loved ones. At the moment there is no help out there and you do feel lonely because unless they have someone who has the disease or are trained to help people that have. They just don't understand and also don't believe you when you tell them things.
    My husband never got over his driving license being taken away from him that was the only part of his memory that didn't go away.
    I certainly felt all alone. Crafting with cards has been my way of dealing with some of the pressure.
    from
    Jean
    xxx

    Reply
    • Ronnie

      Sorry to hear of your loss and I am happy for you that crafting help to take your mind of it, I'm sure he understood the love and care from you and your family..... I know in time I'll be different and therefore discussed with all family members who they should get on with their life...... So live for the moment and enjoy the things which make you happy and over time all the funny and good time will put you at peace.
      I hope my reply is helpful
      Kind Regards
      Ronnie

      Reply
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