caring - over empathically

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myrio
New Member


Date Joined Aug 2009
Total Posts : 6
   Posted 10/26/2009 9:17 PM (GMT -7)   
Something that rarely gets mentioned in personal accounts of caring for a parent or other close family member is the fear that some of their early signs, ie: short term memory loss, can inspire in oneself. That and a fear of genetic inheritance. I am far more aware now of suddenly losing a word that was perfect for what I was about to say or write and, although everyone I know suffers similar lapses, they become more troubling when you have had one parent end their days in 'a state of unknowing'. In a sense, I've found that spending too much time, beyond my capacities, can have this effect . It's as though one almost catches the suffering endured by the sufferer.

Has anybody else experienced this?

CharleyRice1931
Regular Member


Date Joined Apr 2006
Total Posts : 397
   Posted 10/27/2009 8:21 AM (GMT -7)   
Hello Everyone,
It's coming up to two years since the love of my life passed away. 52 years of marriage passed so quickly and now I'm left to reflect on my life, and what a life it's been!
Myrio, I understand only too well your fear of ever suffering with Alzheimer's. Almost daily I find myself checking for signs of failing short term memories. Fear, was about the first thing I learned in life, but I also learned to deal with it. There are advantages and disadvantages in life and every aspects of life and when you see the disadvantages as challenges to overcome, you become stronger and reap the rewards.

I owe a big thank you to Healing Well for the support I received during my care giving years. Some of you may remember my story of caring alone for my wife 24/7 365 days for four years and eight months. I had removed her from a Nursing Home when she could no longer speak, move and rigidity had set in. She was skin and bone suffered with bad pressure sores. I chose to stop all medication except for liquid pain killer. Two months after arriving home one evening, I summoned a doctor for advice. He advised that I not sit holding her hand over night, as she was likely to pass away when I went to the bathroom or to make a drink.
Somehow I managed to bring her back to physical health and we enjoyed an extra four and a half years together!
Strange as it may seem I now find life much harder without my soul mate. I would happily swap places to be caring for her in the blink of an eye. She was my salvation, my purpose for living. She left me with the strength to carry on because she made me whole.
Had I not suffered the whole of my childhood by being locked away from the outside world and deemed a criminal at age two by the courts in Ireland and sentenced to 14 years detention, I could never been capable of caring as I did. For a child to grow up never to experience love, never mind nurture, when love walks into such a person's life they don't let it go.
Without a formal education, I managed to learn so very much about the strange new world I was released into as a 16year old. For the first time the hidden story of every kind of abuse inflicted on children in the Industrial Schools system in Ireland, was released to a shocked world in May of this year. So long my secret shame is no more but theirs to live with.

I'm hoping that by writing about my experiences of how I viewed caring for my wife, will help in some small way those caring for loved ones. Had I just written of my getting up each morning at 04.40AM and going for a run, then to do the caring, washing, cleaning, cooking, shopping, etc every single day for years on end, it would be hard to believe.
With that in mind I have written about my background and life after I found love.

My book is going into production on Thursday and it's titled; 'Dare to Dream'.

about fear; to me it means that someone, or some thing has control over you. Once I took control of our lives my fear vanished, I became a winner.
Hope this post is not too long.
May your God go with you.
Padraig

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/27/2009 11:12 AM (GMT -7)   
MY sweet friend it has been so long i was away was in hospital myself on life support rough go but i am here i can really empathise now with ad peeps in the same situation to an extent i have real bad memory gaps memories are gone ..when i came out of seizure i did not remember caitlyn my daughter i am still battling these demons i have with trying to remember so many things i have forgot it is very hard to see the look of puzzement on caits face when i cannot remember someone something..twist of fate my friend i wonder all those yrs i looked after ad peeps ..hmmm...i can honestly say it is very scary for me so i am a lot more in tune with others in same simuliar circumstances......cant wait to read your book i was on the journey with you for so long my friend....love n blessings...lyn
 

                                         LIVE LIFE TO THE FULLEST            

                          ....CoModerator crohns..anxiety n panic...alzheimers


SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 10/27/2009 11:40 AM (GMT -7)   
Lyn I'm glad you are back & doing better.Still on 02 24/7.Last week Larry had me to the clinic,Dr said the next time we may not be able to bring you back.
They thought I had the flu but I didn't,just a small infection in the lungs.They were ready to send me to the hosp.when I say NO!!!!
I got a shot in de butt,extra inhale meds for my nebulizer & I came home.I'm doing ever so much better.
I am going to get a finger Oximiter soon to keep check on my 02..........When I went in Fri.it was 73,not good at all............is 96 now.......
SnowyLynne


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/29/2009 9:15 AM (GMT -7)   
snowy my friend plz plz do look after you we are old war horses us lol so we dont give up w/o a fight ya they basically said to gather family for me i wasnt coming out of it but a couple mths later here i am it has been so hard to depend on cait for everything i get so frustrated fell last night from the dang nueropathy in my legs broke my glass coffee table...scared self n cait to death but we are fighters sis sokeep up the fight nice to be around eh ,,my best to you n larry......love lyn

CharleyRice1931
Regular Member


Date Joined Apr 2006
Total Posts : 397
   Posted 10/30/2009 8:19 AM (GMT -7)   
Lyn,
I feel so sad to learn of your condition. After all the years you gave to others, I sincerely hope that you receive the very best support you so richly deserve. After my experiences with caring for my wife, I find it very upsetting to keep reading and seeing the frustration that both loved ones and care givers are repeatedly put through.
I'm only too aware that everyone is different: care givers and their loved ones, but there are so many common factors that come with this illness. By writing my story I'm hoping that many of the ways I managed to cope with looking after my wife on my own for so many years will prove useful to others. Circumstances differ for each person that make it impossible for almost anyone to go it alone.
It was my good fortunate to have been capable of managing alone. We were a couple; she 73 and I, 76; married 52 years, by the time she passed.
It'll be reward enough to know that by reading our story, it will help and encourage other caregivers through the challenges of providing loving care for their loved ones. At a cost of $3,800 to publish, I expect little or no return for our story, it's just something I felt compelled to do.
There have been times I've felt down since Jean's passing. Some might call it depression, but like a March hare I fight it by running 7 miles each morning at 05.30AM!
Hang in there Lyn and keep fighting.
May your God go with you.
Padraig

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 11/4/2009 1:52 PM (GMT -7)   
My sweet friend and mentor ..i have missed our talks so much ..i am not doing the greatest but i know others are worse off than i am so i live each day thanking  him for what i do have left and feeling blessed..i hope this post finds you well my friend and that we shall contiue our journey together.I would love to read y your book you gave me a lot of insight into what your love for GJean was all about..unconditional and never with boundaries...may my God bless n keep you safe..love lyn


..                          Co Moderator for Crohns , Anxiety/Panic ,Alzheimers....
 
           Crohns,Pyoderma Gangrenosum ,Seizures ,Fibro ,completely Deaf ,Anxiety/Panic,Neuropathy..
 
......I COULD feel sorry for self but where would that get me....I CHOOSE  to fight n survive...
 
.                                    Donate  www.healingwell,com 
 
                                                        Lyn

Post Edited (Howlyncat) : 11/28/2009 8:58:29 AM (GMT-7)


SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 11/4/2009 5:27 PM (GMT -7)   
Lyn you have Alzheimer's too? When did that happen??
SnowyLynne


CharleyRice1931
Regular Member


Date Joined Apr 2006
Total Posts : 397
   Posted 11/5/2009 7:24 AM (GMT -7)   
Hello Lyn,
It's so sad to find that you are unwell. You have given so very much and you now deserve the best of care there is in return.
With reference to the book. I finished it some time ago and there is just one small outstanding item; the pen name on the cover requires amending. It should be available by the end of the month.
As for me? There are periods I find myself lost and try to get back into the mindset I developed as a child of shutting out the world. There's the constant fear that many AD sufferers find ever present; of being 'put away' when one can no longer cope on one's own. I'm still fighting those fears with the morning run. At 78, I must be at least one card short of a full deck.

As view stories on different Alzheimer's sites it's noticeable that care givers still encounter the same problems I experienced with Jean, and the advice rarely changes. In choosing to do my own thing by ignoring set boundaries, I found some success and discovered the gift of caring for her to be a many splendid experience.
Some of the interaction between doctors and care givers brings to mind a story. A fellow visited a doctor with a sore eye. He explained: "That every time I drink a cup of tea I get this sharp pain in my right eye". The doctor: "Do you take sugar?" Patient: "Yes, why do you ask?" Answer : "I suggest you remove the spoon from the cup!"
It's good to see the funny side of life.
Take care, and may your God go with you.
Padraig

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 11/7/2009 1:25 PM (GMT -7)   
Snowy my friend i am currently undergoing neuorlogical testing to find out what is going on with me exactly.Cait came home found me face down on a glass coffee table in a grand mal seizure from there i was on life support with tubes in every orrice i have lol..i did not remember mom n dad died didnt remember cait month year ect ..my hearing is totally gone now and hv neuropathy in both legs..i sit here day after day forcing self to try to remember events in my life some i cant i know it frustrates the ppl around me as i am consantly asking questions over n over again..i panick constantly and hv become housebound....i so despise what has happened to me but i will get thru it with good friends like you ...add me to messenger if you would like k ..luvs ya ...lyn

we will get thru this my friend yeah


                           co mod crohns ......anxiety /panic.....alzheimers....

Post Edited (Howlyncat) : 11/7/2009 1:28:33 PM (GMT-7)


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 11/11/2009 6:01 AM (GMT -7)   
Myrio, I too had a parent pass away from alzheimers. You didn't state how old you are, not that it matters much because many people develop symtoms at an early age, I was just wondering. Another question, are you on any meds that could be causing you issues with memory lose. I take Neurontin (gabapentin generic) and it does cause me problems with remembering words or people. When my mother started showing symptoms her doctor ordered a ct scan of her brain and it showed she was having mini-strokes. We had no idea. What I am saying is there could be something else that may be causing your problems. This sounds like something you need to discuss with your doctor. It may be an easy fix. Good Luck!!!!
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 11/27/2009 11:02 AM (GMT -7)   
My friend..we did have a journey together and i definitely know your love n caring for GMA Jean kept her going for as long as she did.....i am so sorry i was not around my friend.....things are hard between cait and i right now she angrily cried out to me that i had died in hospital..i know she is not being horrible she is hurt too many losses..having to become the majority parent since i have been ill and howie is gone...i feel very isolated anymore confusinjg at times cry so much it hurts but i still get up each day ready to tackle a new day hoping i have learnt from mistakes from day..s before ya know.....i hope this finds you full of turkey my friend......May your God bless you n keep you safe...luvs...lyn
..                          Co Moderator for Crohns , Anxiety/Panic ,Alzheimers....
 
           Crohns,Pyoderma Gangrenosum ,Seizures ,Fibro ,completely Deaf ,Anxiety/Panic,Neuropathy..
 
......I COULD feel sorry for self but where would that get me....I CHOOSE  to fight n survive...
 
.                                    Donate  www.healingwell,com 
 
                                                        Lyn

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