1. Incony

    Incony Registered User

    Mar 21, 2006
    I just want to put some stuff down in writing to share. Its just great to be able to do it somewhere where at least ( i think) folks share something in common, and understand, having shared the same experiences, what happens to you when either you encounter alzheimers yourself, or attend to someone who has it.

    Why?, well i just cant relate directly to anyone i work with.. though they are sympathetic, understand and make all the right noises, its not what i want.
    In reality i really dont know what i want now. Time to stop and go back a few years? A cure for everything? To be able to live forever? To just switch off and let go? to be a smarter person..able to cope better with life?

    I dont have alzheimers, but a serious road accident in October 2004 broke my neck in three places.
    During that accident, my brain was stuffed into the back of my head.. brain bruising they call it. Miracles happen..and though i spent a month in a cage, bolted to my head, unconscious under morphine sedation, i survived and with some extreme effort i was able to return to work 4 months afterwards.
    But a result of the accident is short term memory loss. It varies from day to day.. and occurs without a conscious warning.. like in the middle of talking to someone the word i was going to say isn`t there, i cant see that coming.. its like a dead spot, without warning. I loose the names of things i deal with everyday, spurious and unlikely memory loss, such as the name of the place i am going to.. i have to get out the map to refresh my memory, even though i know where i am going , its name has gone.It does come back almost every time without help. Again, often it just bounces back later, like being pasted back in place. I deal with it. Being more methodical seems to help.

    I understand a little, therefore, what has happened to my mother, who has been overtaken by Alzheimers. That came to a turning point yesterday. We have been managing. My brother and i live in her house, maintain it, and a carer comes in everyday to make sure mother "was".. ok. What is ironic about that, is my mother spent her life up till she was seventy, ( she is now 76) in caring for others, as either a carer or as a manager of homes in our area. Most recently she cared for the first ( or one of the first, i cant be sure) UK woman doctor...

    Yesterday, she set fire to herself. An accident of course and fortunately both my brother and i were there to deal with it. She was in her bed (downstairs now) since she cant walk far, or climb stairs. I was upstairs, my brother downstairs cooking. I heard the fire alarm. I thought it was my brother.. smiles, we like oriental flash fried food. But a moment later.. i heard the panic and he called me.

    She had set fire to her bed and her arm and shoulder. My brothers quick action doused the flames with water from the washing up he was doing. Her cardigan had melted to her, she looked like someone had painted her with black gloss paint. Fortunately its not terminal. Though burned quite badly she will recover.
    She has had excellent attention in hospital, where she is right now.

    What is quite unerving is that she did not understand or feel what had happened, it is why it got to the point of setting off the fire alarm.. she was still smiling, totally pain free... and really didnt understand at all what had taken place.

    The result of this , is now things must change. My brother and i live in my mothers house.. but she will now need constant attention to be safe.. she cannot be left alone. What that means is maybe the house will go to pay for her upkeep.. if it does.. my brother and i will have to find somewhere to live.. and its just incredibly expensive here. Is that a selfish thing to say? i feel guilty considering it..

    In one small moment her life and ours have changed. For the last two years we have kept the house going, enabling her to live in her own home.. she was happy , everything fitted everyone.. now nothing fits at all. At least thats how it seems to me.

    Additionally, since my own accident ive become much more emotional. I cry now, something that never touched me before. I dont feel depressed.. in the sense that i still will fight to overcome problems, look for and facilitate solutions... I am an engineer. a problem solver. It enabled me to overcome my own accident.. retake my driving test, all my work exams, since as a certificated engineer, others depend on me. My signature goes on the bottom of legal documents. I determine the safety of others.

    I just find myself being nostalgic, i just get very very sad and cry. Ive looked at solutions to that too.. hence the intial remark about switching off and letting go. What the hell are we all fighting for?. Where is the human race going? What`s our purpose? Where is the plan?, just cannot see one sometimes.. i feel lost.

    Now.. just reading that would make anyone depressed.. :)

    I am sorry.. i hope this doesnt turn anyone to seriously consider taking their own life. But.. having read some of the posts here.. i just see what some of you have encountered as similar to what i feel right now.. sharing those sentiments enables one to let them go for a while. Its why ive posted..just doing this helps me.


  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    Incony Welcome

    Thanks for sharing your story , looks like you got lots to sort out , sounds like a lot of change is going on around you & change is scare ,at lest your mum is safe ,I find focusing on the future help me when I felt low , & you don’t need the added worry of losing your home ,easy said then done ,but fight for your rights in not losing your home with your brother

    You come so far since your accident ,that the only way is up

    Wishing you all the best for the future & I admire your courage in sharing your story
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Incony
    what a story, and what a dreadful accident!

    I'm so glad you have recovered and have been able to tell us about it.

    In particular you say
    as my wife Jan does not appear to feel things that I would say "ouch" about.

    On the short term memory stuff, since being under stress with Jan and being pretty unhappy [that is such a mild way to put it] about life itself, I do forget stuff too. I rationalise that as follows: the brain remembers many things by repetition, particularly short term things. When we are stressed, our minds are all over the place, and we may not do things repeatedly and thus not train the brain to remember. That is true even for names of things and people.

    ...just my views of course.
    Nothing. Nowhere. There is none. There is none. My answers to your questions.

    We do the best we can in the time we have. There is nothing beyond that, no grand plan. So we make the best of our time. It makes it worthwhile to have someone to love and that is why it is so hard when a loved one gets dementia, or cancer, or dies in an accident, or.... Life is love. That's all.
  4. Michael E

    Michael E Registered User

    Apr 14, 2005
    Ronda Spain
    Incony hi,

    That van looks badly bent - that must have been quite a prang! You were lucky to get out at all. Many congratulations on the recovery you have made and getting back to work - cannot have been easy. To have the responsibility of your mum as well with AD is dreadful when you are probably still traumatised - I think it sometimes takes years to 'forget' major incidents completely and your forgetting must keep reminding you....

    The entire economics of caring and paying for homes is horrid and pretty unfair - I am not certain I can afford to pay for a home for my wife (and retain any quality of life for myself) and have been looking at extensive home care as well. You and your brother are out at work during the day??? What would the costs be of having 'cover' for the period you are both out of the house? It has been occurring to me that the 'cover' does not have to be highly qualified - just a bit practical and maybe it would suit an OAP.... They would gain income and a reason to get up in the mornings - if they need physical help with your mum - falling over etc then they can call 999... sort of thinking out loud at the moment but it may be a role... Lots of OAP's on lousy pensions and bored - I am told... I am not sure this is a solution for either you or for me but I am pursuing this as a possible, maybe!!!

    There are good times and there are bad times and the trick is to get through the bad times - as you have already proved. OK this in another challenge at a time when you may not be on top form so it takes even more courage but you have that in spades it would appear. This world is not perfect - never was and never will be - life is a bitch and then you die but it is the only life you have - I really do not fancy - total nothingness.......

    good luck

  5. Lila13

    Lila13 Registered User

    Feb 24, 2006
    How hard it is for anyone to make the right noises.

    I am glad you recovered enough to get back to work.

    Glad you were both there to deal with the fire. Glad she is getting good care in hospital.

    I hope you can get full-time care at home for her, and that none of you have to leave your own home.

    I'm sure you and others need to let themselves cry sometimes, to take a break from coping and being responsible.

  6. Amy

    Amy Registered User

    Jan 4, 2006
    #6 Amy, Mar 22, 2006
    Last edited: Mar 22, 2006
    Hiya Incony,
    The guys have been busy this morning replying to you!
    Stop the world I want to get off! It aint going to happen though. You are obviously a coper, and you will go on coping; the good thing about TP is that you can admit to those moments of weakness, allow yourself a time of being vulnerable, then you get back on the roundabout.
    Sounds like a statement of fact to me. You cannot not consider it. Yes we all love other people, but we are self interested as well. You need to take advice, find out what your position is with regard the house if it needs to be sold.
    I too have this problem, and I teach. At times have to give up using kids names; at times have to decide not to teach a particular element of a lesson, because I suddenly lose it. When things are particularly bad, get in the car and cannot remember which switch is air conditioning etc; have once had to drive out of a petrol station, park round the corner, whilst I figured which way to turn the petrol cap (no kidding!), but as soon as I didn't have someone waiting behind me I could sort it. So your beautiful brain is not only coping with recovering from physical injury, it is also dealing with the stress of loving someone with dementia.

    Quoting Norman, Day by Day. Mum is safe now; you and your brother together can sort the way forward.
    Take care,

    Just had to edit this because on second quote typed in "Paste" instead of Quote! Nutty, completely bonkers , and the day is just starting!
  7. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    My mum has been in residential care for over a year and her house is not sold, not even on the market. My understanding is that the council cannot enforce the sale of a house, what they can do is put a charge on the property. This would mean that the bills accrued in residential care would be paid by the council and when the house is sold the council get their money before anything else is paid out. I believe they also have the discretion to ignore the value of the property if a former carer is living there.

    The council is presently owed approximately £15k for my mum's care home bills but no interest is accrued on this debt unless the property is not sold within 56 days of the death of the owner. As my mum's bills for the nursing home will rise by £125 per week when she becomes officially self funding we have no intention of selling the property. To date we have not had any pressure put on us to do so.
  8. DickG

    DickG Registered User

    Feb 26, 2006
    Hi Icony

    Whats our purpose? Right now to care for the one we love as best we can.


  9. Incony

    Incony Registered User

    Mar 21, 2006
    Thank you all for the considered replies.

    I agree with you Margarita, " The only way is up" but i sense it differently. imagine you are number zero sitting in the blackness of space... to your left, negative numbers stretch away into infinity, and to the right positive numbers do the same. You can choose your own preference, wether you see it as up or down, left, right, forwards or backwards. Your choice.. your direction. For me, standing still and trying to decide which way is "up" isnt something i am happy with.

    Brucie, what you say is true to my soul.. you colour its shadow.

    Michael, it can be called "courage", which itself incorporates determination, i think i rely on it, and when i cannot find what is the best conclusive determination, my courage is undermined. Essentially not being able to decide what to do next, feeling lost, like standing at the crossroads. When i posted, i was lost. I said it.

    Lila13, Amy, i am back on the roundabout. Thank you.

    noelphobic, yes i agree, my remarks were panic...

    DickG and everyone. I think ive been experiencing grief. Because of the sudden change in our circumstances and how it meant the end of one thing and the start of something new.. Coming home to an empty house yesterday and today has enabled me to come to terms with it. I am happy now. at peace again.

    Mother is taken care of, completely ok, better in fact than what i could provide for her.

    I see now that it was like i had lost an anchor, Mother. She was the centre focus of the house, its stability, her house, her.. and my life at least. The last two days ive let that pass. It is the past. gone now. That is not being negative, just my acceptance of the change.

    Of course, its great we still have her. What i am saying is, i am at ease now, with myself, and the way things are. I was not .

    Perhaps i couldnt come to terms with losing her. My dear father died of cancer in 1980. It took him a year.. wasting away. I couldnt face that either, the day he died i was half way across the country, effectively hiding i think, when i look back at those days.. i know now that i couldn`t accept or come to terms with it.

    Whatever happens now will not put me in the same position i felt a little while ago. i can deal with future events .. i know where i am going. Mother is still just as important, just not the anchor she was.. i know she must follow her own destiny., and so will i, and my brother and all of us..


  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    if you don't mind me shareing What come to my mind when you say

    For me personally it’s a sense of
    a leap of faith into oneself to the unknown, fear can keep one stack in space & no time .

    Happyness in a moment in time So wish you lots of happiness in you new journey in life with out your mother living with you.

    How is your mother coping in her new surrounding?
  11. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    Hi Incony

    Yours is a philosophical question - something about the ultimate nothingness ...

    Yet, when I find myself at crossroads, then I remind myself of the following quote:

    "The dark moment that the caterpillar calls the end of the world is the sun-filled moment the butterfly calls the beginning."

    Furthermore, I always believed that we know so less and perceive so little in the ultimate scheme of things.
    It's like when you are at ground level, your view is limited - say, you see just a few cars speeding across a highway - but when you go up a level, say the 26th floor of a building, you not only have a wider view, you can see the entire network of the motorways, who's on a collision course, who's going where and the relation of the cars to one another on this motorway.

    Coming from the east, I love discussions of this kind but I guess TP isn't the forum.
    Nevertheless, when we find ourselves in situations beyond our control and understanding, I tend to philosophise as above. :)

    Warm regards
  12. Margarita

    Margarita Registered User

    Feb 17, 2006
    #12 Margarita, Mar 25, 2006
    Last edited: Mar 25, 2006
    What a lovely philosophical saying , Oh dear you have Rekindle a light in me, I was going to do a open university course on philosophy, I even enrolled last July, but mum sister was ill & took mum on holiday to Gibraltar for 4 weeks to see her, & miss the date to get the grant in on time.

    I have so many books on the subject, but like you say TP is not the place to share it, but I wonder why not ?if it help someone. But I have been getting in to trouble with cope right, wondering now if I can quote something as long as I say who said it? Where did you get that quote from?

    I bet your mother use to tell you lots of saying before she became ill ,Care to share ?
  13. Margarita

    Margarita Registered User

    Feb 17, 2006
    #13 Margarita, Mar 25, 2006
    Last edited: Mar 25, 2006
    by Serge Kahili King

    The first one is called La'a Kea, "Lovelight," or "Clouds of Color."
    1. Imagine yourself surrounded by a field of positive energy, in the form light, color, sound, or vibration. Increase the intensity by pikopiko breathing (inhale at your crown, exhale below your feet) and/or thinking of happy memories.
    2. Imagine this field expanding outward to include the person, place, or situation that you want to help.

    3. Assume that this field of energy is responsive to your positive intentions, and give it instructions on how you want it to be helpful. Use simple directions like "Enlighten!" "Release!" "Focus!" "Center!" "Bless!" "Empower!" or "Assist!"

    The second one is a variation on The Dynamind Technique.
    1. Think of the person, place, or situation that you want to help. 2. Make a statement like this: "There is a problem and that can change. We want that problem to go away, we want the condition to be healed." 3. Make seven taps of your fingertips on the center of your chest, on the web part of each hand, and on the bone at the base of your neck. Then finish with a pikopiko breath.


    Not saying AD can be healed ,but other part of your life & yourself ,Blame my mum she got me in to all this :)
  14. Incony

    Incony Registered User

    Mar 21, 2006
    Its a php site. yes?.. it would be possible to create an anything section.. where topics related but not specific to AD can be given a window. If there is already i apologise, ive just looked at the replies to this thread..

    If not, my own website incony.org offers me that ability for free.. i would create such a presence.. and a link.. if thats all it requires to make AD philosophy a topic for interested users.

    To which i would add music.. we all listen to something that helps us through.

    Sharing , no matter how absurd it may appear to one individual, is what enabled me to post here.. read my first post, i defined the reasoning..

    Either way.. i would perhaps need some advice to create the php stuff if thats what it would require, not for any other reason than such advice would save me the effort.It is feasible ...

    " The ultimate nothingness".. is paired with the ultimate everything.


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