I have Alzheimers, there is no cure, i am dying, FACT!!...

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Posted on by Norm McNamara

Hello, I am sorry if that opening title upsets anybody but do tend to see things as they really are, but on saying that i still have a life and believe it or not i still have a future, albeit an uncertain one, and this is why i want to talk about End Of Life Care.

I know its still a very TABBOO subject and not at all comfortable to discuss amongst some, but when you are faced with decision making after the sort of diagnosis i have had, i really believe Its in everybody’s best interest to talk about these things openly and honestly.

The day me and my (Angel) wonderful wife Elaine and now full time carer sat our family down and spoke about this was without doubt one on the most emotional days of our lives, but since doing so the stress that is has relieved (Especially from my wife) is immeasurable.
Now everybody knows where and when and even what to dress in!! I don’t want any black as i try to live my life to the full and without worry. All my life i have tried to shield my family from the horrors and the worries of the world, and would like to continue to do that on the day they say goodbye. We have also put our financial affairs in order and plans for the childrens future. But more importantly we have taken away all of those awkward moments and struggles to make the right decision from my family and friends, none more so than my darling wife.

I have decided what kind of "End of Life " care to have, i have also informed her at what point to put me into residential care, no matter how much i may argue about it when the time comes, because i do not want my beautiful wife to go through the horrors of looking after someone with late stage dementia and all that it entails, my father and grandmother both died of Alzheimers disease and i have seen the heartache it brings. I would be so selfish if i sat here and thought " Thats OK" i wont know whats happening anyway so what does it matter! What right have i to treat someone like that who has dedicated thier life to looking after not only me but my children then our grandchildren, not fair is such and understatement.

So the next time you hear the words "Dying Matters " YES IT DOES!! Please remember those who are left behind who are left there to pick up the pieces, please remember that if you know you have an incurable disease it doent mean tha your life id over. There could be a cure just around the corner, but until that happens, please help your loved ones out, and talk openly and honestly about what YOU would like to see happen if the worst comes to the worst. It could be your legacy of helpfulness that people will remember most. i am now four years into a diagnosis of Alzheimers and i hope to be here in another four years time writing about te same thing. I like to think i have tried to achieve so much since being diagnosed, Please (Google Norman Mc Namara) but i feel as if i still have so much more to achieve and one of those things i want to achieve is to make sure that people with dementia are involved as much as possible regarding there end of life choices, so, please watch this space !!LOL best wishes, Norrms and family xxxxxxxxx

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10 Responses to I have Alzheimers, there is no cure, i am dying, FACT!!

  1. Hello, everyone is dieing. Everyone is one day closer to their death than yestereday. The questions is what are we all going to do to live fully in today? Prepareing for end of life care is an obligation for all us. When we point out to each other that we (persons living with the sysmptoms of dementia are a day closer to out death) we reinforce a stigma that somehow we may die sooner than someone else. Of course we will. I could be hit by a car today, have a heart attack, eat bad food – there are thousands of ways our lives could end, just because someone in a white coat said “you have dementia, probably, maybe of this or that type” these words did not bring you closer to your day of death – they just told you that if you don’t die of other natural or unnatural cause you will die of this cause….Richard

  2. Carrie Mackenzie says:

    Norm, congratulations on putting it out there. I wish you all the best in your treatment and i sincerely hope there is a cure coming sometime soon. Thinking of you and your family xx

  3. daughter says:

    Norm, l applaud you for strenghth. @ Richard, you don’t have to be diagonised with alzheimers to have these life plans in action. As with alot of families around the world, especially those faced with an illness that is progressive , these issues are talked about. And so they should be. l have lived my adult life making my own decisons and so in a capable capacity l will make my own in my demise. Yes l have a father in late stage alzheimers,he is 67 years old.

  4. Chris says:

    Thank you for the letter. I have Parkinson’s Disease and find myself in the same position as you.
    Just because we are “stamped” with an incurable disease doesn’t mean it’s the end. We have a “lot” of living to pack into our years…or should I say “Make the most of every day!”
    God gave us this life to enjoy. I know it can be depressing at times…but at least we can be “thankful” for every day we have!
    God bless you and may he give us the strength, knowledge, and love to live life to the “fullest!”

  5. thinley says:

    Hello Norms,

    After watching the movie Dying Young-Julia Roberts(I am a big fan of hers),it struck me that there could be people living knowing about their death with fear.And I just googled and came across this.

    You know, what I believe in is, there is nothing that is perfectly right or extremely wrong, no one is too young to die or too old to live. Just be grateful for yesterday, happy for today and hopeful for tomorrow……it could have been worse!

    Let me know, if you feel for some fresh air, peaceful moments and spiritual healing from the Land of the Thunder Dragon-Bhutan.

    I am a travel agent and organise tours to Bhutan BUT this is not what my mission with you is all about.

    I want happiness for this new year and I know I will be happy knowing I am giving you and your dear wife happiness.

    Merry Xmas and Happy New Year! May this year be filled with happiness and great health!!

    Best Rgds,
    Thinley

  6. Lisa says:

    Hi Norm, I am my father’s caregiver. He also has AD. My mother died from complications from AD in May 2011. I have already had the discussion with my children, and they know what I want them to do, if I am diagnosed. I am 50, so it’s not too soon to learn that for me. Thank you for you candidness and honesty!

  7. barb says:

    Thank you Norm for this information.
    I am happy that your dealing with Alzheimers well and that really encourages others to continue on with life. I just want to let you know that there’s hope for us all and that is Jesus. Jesus is the only one that could give is peace, happiness and hope to live eternity with him. May the Lord bless your life and the life of your family… and may you have many happy years!

  8. Sylvie says:

    Dear Norman
    I don`t have Dementia yet but as an Occupational therapist having worked for and with dementia sufferer`s and their famiies,I am making it my life`s work to
    !. Destigmatise the word ” Dementia ”
    2. Educate the public using poster form advice on how to engage with someone suffering dementia, in a positive way with positive outcomes for both
    3. Design/produce a logo/ symbol that can be used in commercial premises like shops so that someone can go through a till, for example, and be given a little extra time and patience over handling money.
    We must take the Dementia`s out into the public arena, without shame.These organic diseases do not start life as a mental health issue. If anyone is willing to comment on the logo, I would be grateful. Contact me on: sylvie.clayden@btinternet.com

  9. eileen says:

    My father is in the final stages of AD at age 77. He was diagnosed about 4 years ago. He is also a diabetic which complicates issues. He is now immobile and we had to have him hospitalized 3 days ago because we could no longer provide the care needed at home with what appears to be internal bleeding. My parents both never wanted to discuss their final arrangements but now as the time is close everyone is in a scramble to find out their wishes. If I can tell anyone 1 thing we have learned it would be to get their assets out of your parents name. Have a legal document drafted to ensure they can live there as long as they live. This will prevent the state from seizing their assets for medical care. enjoy every minute you have with them as so quickly their time can be cut short. I would do anything to be able to spend the time with him that he sometimes so needed but our lives were too busy to accomodate him. Spend every minute you have with them now.

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