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surviveandthrive
Regular Member


Date Joined Jun 2007
Total Posts : 113
   Posted 6/3/2007 1:48 PM (GMT -7)   
I entered this site, curious about the support out there, the support I didn't know about when caring for my own mother for the last two years of her life. I was her sole caretaker, with my 90 year old father's help, and the struggles and frustrations were many. It has been a year since I lost my mom to this horrible disease and still wish that I could know if she was aware at all that I was with her in her bedroom, here in her home, when she died. Did she know she was surrounded by family at that time, or was her brain still telling her she was without family? It will haunt me forever, I'm afraid. Again, just curious to read some of your postings and find some parallels to my own experiences.
Like my screen name.....I have survived so much and aim to thrive from all the experiences I have had. It must be possible and I will never stop trying!


CharleyRice1931
Regular Member


Date Joined Apr 2006
Total Posts : 397
   Posted 6/4/2007 6:04 AM (GMT -7)   
Hi surviveandthrive, Your post struck a cord with me. I've been racking my brain about the accepted notion, that people affected with Alzheimer's wish to 'go home'.
I have found this with my wife in the early stages of the illness. She wanted to be back home with her Mom and Dad where she knew she belonged, was wanted, protected, safe and no worries about trust. Of course her parents were no longer, nor was the home she grew up in.

Now I see the most important thing is winning her whole hearted trust. I'm now aware I lost that when I placed her in a NH, hence her giving up on life and not eating and drinking. After taking her back home it took a good six months of efford to get her to eat and drink. Some meals took as long as two hours!

Now more than four years on, the same meal will take half an hour. Though she's incapable of speech or movement her eyes and face speak volums. She responds to my touch and puckers up to my kisses.
Emotions only dies when the person dies, we tend to forget we are human Animals, and as such have a sense of feelings that has become dulled once we leave childhood. See the child, it's aware of good and bad vibes, these become keener in those afflicted with Alzheimer's.
I'd say your Mom knew of your loving care.

It's NOT 'it MUST be possible', it IS possible to survive, I'm a surviver, you will be. My best wishes to you. Padraig

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/4/2007 6:31 AM (GMT -7)   
Survive , welcome to Healing Well. So glad you found us! This is a great site with wonderful caring people. You won't be disappointed.
 
I am sure that your Mother knew you were present with her many times and I know how you feel. You just have to believe that she left this world in peace knowing how much you loved her.
 
My son was killed instantly in car accident and I was devestated and worried that he did not know how much I loved him.  But I have come to accept that he did and I still tell him everyday.
 
My husband's Grandmother had Alzheimer's for 10 years before she died in her 90s. My mother-in-law went everyday to feed her lunch and eat with her.  She did not know who she was but sometimes her eyes appeared to recognize my mother-in-law for a few seconds and then she was gone again.
 
So, please believe your Mother felt the love surround her.
 
You are a special person to care so deeply for you Mother. Bless you.
 
 
 
 
 
Respectfully
Kitt
Moderator Anxiety ~ Panic Disorders
Dx: Anxiety/Panic, Depression 
______________________________________________________
"If you doubt you can accomplish something, then you can’t accomplish it. You have to have confidence in your ability, and then be tough enough to follow through.” 
~Rosalyn Carter


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 6/4/2007 11:14 AM (GMT -7)   
Welcome
I lost mom just over a year ago to this DD and complications
I look after my father now and am sole caregiver

KNOW please know with all your heart and soul
SHE was aware of your love and caring even with this DD that robs us of them .......

A simple touch means so much to those we care and love and look after that have this .....it really does make a difference

I am so sorry for the loss of your mom too I know firsthand how you feel and I am with you in heart and spirit ......
God BLess
LYN
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Dx with Crohns ,pyoderma gangrenosum ,Anxiety and panic
 Way to many meds to put down ..........
 
                   ONE step..Leads to MORE 
                       
 God Bless
   LYN                               
                          
                                  


surviveandthrive
Regular Member


Date Joined Jun 2007
Total Posts : 113
   Posted 6/4/2007 12:02 PM (GMT -7)   
Hello Charlie,
Thank you for your comments. I read your entry with great empathy and emotion. I can still see and hear my Mom asking for her father, looking around the house for her brothers, and wondering who would milk the cows if she didn't get going. As you know, their "present" changes sometimes by the hour, and later in the day she might be looking furiously for her lesson plan books to get ready for her teaching assignment the next day. It made me so sad and useless for awhile until I learned to join her reality, wherever she was. I found that telling her repeatedly that her family had been gone for years was not only troubling to her, but that she wouldn't remember it. So we talked about her father, where he was and if her mama was too busy to talk or help us make applesauce. After I learned to giver in to her reality, I was able to find comfort in her presence because she was comfortable. As much as I wanted to shout out that her granddaughter was graduating from college and how proud I was of her, that her grandson was being a wonderful father to her only greatgrandchild, and that her greatgrandchild was named after her and was such a delight....I had to keep those things I so wanted to share with my mom to myself. Instead we stayed in her reality. How I would have loved to get a hug from my mom to me, not to the woman taking care of her. But at least she saw me as a good person, not her daughter, but a good person nonetheless. Fortunatley, up until her death, she always saw me as one of the good guys. I know I was fortunate to have that. I commend you for all the loving care you are giving your wife. Removing her from the nursing home, and putting her in, had to be two enormously difficult and heartwrenching decisions. Keeping our loved ones in their own home is a gift that not everyone can give for many reasons. I happened to be able to take a leave from my teaching job, had my house sold almost immediately, and could financially take the hit of not bringing in an income in order to care for her and Dad. Friends tried to deter me because of the loss of income from my job, the back steps I was taking in my career, and the lonliness I was sure to face, but somehow I just knew it was right. Holding my Mom in my arms when she passed and capturing one of the four tears that came just seconds afer her last breath....that is what has given me a gift that is both precious and has also left me in this limbo of not quite knowing how to get back into the real world. Grieving her loss, and then my Dad's, has been hard. I had Dad as my Dad, with very little senile decline (he was 90) and we had conversations and memory sharing. WHen he was gone, everything was so empty. The house is smpty in so many ways, yet filled with many memories, frustrations and most of all LOVE. They are gone, but will always be here and I know I honored what they most wanted and that was to die in their own home, one they had built just so that would be possible. So this morning I am looking out at the mountains from the window that Mom had the architect put in such a place so that she had maximum exposure to the mountains and not the neighborhood down below. I sip the same tea from her favorite tea cup and gaze at this beauty she left me to enjoy.
Stay strong and know there are many people helping you in our own way.....
LE
Like my screen name.....I have survived so much and aim to thrive from all the experiences I have had. It must be possible and I will never stop trying!


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 6/4/2007 12:46 PM (GMT -7)   
Know you are truly an inspiration to us all that look after our loved ones at home ........

I too was able to do this with no real problems caused in my life
I had promised Mom I would never put her in a home
Both her and I were Geriatric Charge nurses........
I do feel bad for those that cannot look after their loved ones at home

PLEASE do stay with us ........
    Contribute today to support Healing Well Forums...Donate @
 
Co Mod ..Crohns Forum
Co Mod A/P Forum
Moderator ....Alzheimers Forum 
 
Dx with Crohns ,pyoderma gangrenosum ,Anxiety and panic
 Way to many meds to put down ..........
 
                   ONE step..Leads to MORE 
                       
 God Bless
   LYN                               
                          
                                  


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 6/11/2007 12:35 PM (GMT -7)   
Wondering how you are doing

God Bless

LYN
    Contribute today to support Healing Well Forums...Donate @
 
Co Mod ..Crohns Forum
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DX with Crohns, Pyoderma Gangrenosum,Anxiety /Panic
 
Take my Hand ...I will WALK with you
 
When the GOING gets TOUGH..The TOUGH get GOING 
 
 God Bless All
 
LYN    
                                  


surviveandthrive
Regular Member


Date Joined Jun 2007
Total Posts : 113
   Posted 6/11/2007 1:46 PM (GMT -7)   
HowLyncat...
Dear Lyn,
Thanks for checking back in. It's as tho' you were reading my mind. This last week has been extremely difficult and I can't put my finger on it. Every time I think of Mom, and that seems to be extremely often, I start to cry. I cry out of missing her, out of the not knowing how she really was, what she was really aware of, the injustice of robbing my Mom of her precious memories and out of the dream I have that would be to have just another conversation with my Mom, before the disease took that part of her away. As many people who have lost loved ones to this disease, we keep journals for our own sanity and to remember and chart the progression of the disease. I was adding some post scripts to what will become my own book and included a photo I took of her, one that I used at her memorial service. I took that picture just 9 days before her death. I had just brought her home from getting her hair done, she was wearing her favorite pink sweater, her beautiful white hair was shiny and reflecting the sun as she sat in her favorite chair in the solarium, looking out at the mountains. She wasn't necessarily wmiling, but she has a very peaceful look on her face. All I could do when looking at that picture again was wonder if she REALLY was peaceful or if she was inside yelling to get out so that she could fix her own lunch, tend to her own garden, make her own bed, and do for others which is what her life was all about. Was she angry I was in HER kitchen, in HER garden, in HER bedroom or was she peaceful? Before the Alzheimer's became limiting as far as her physical activity, she remained very physically active, even though she did pretty random things. But she was never still...always looking for something to do, someone to help etc. But when the inactivity started, I can't imagine how frustrating that was for her. No longer able to move about at her own free will, no longer able to do what she wanted, no longer able to remember. I just hate this disease and am so angry she had to be a victim!! I don't want my Mom with Alzheimer's back, because I really do not believe she was happy. But I want my 91 year old, feisty, full of advice, nurturing and loving Mom back.
Again, thanks for your concern. I am going to get by alright. I always do. :-)
Like my screen name.....I have survived so much and aim to thrive from all the experiences I have had. It must be possible and I will never stop trying!


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 6/12/2007 3:01 AM (GMT -7)   
Hun
I will be totally honest here as always

I cry everyday for mom and I look out my window and see the house she and dad had lived in for over 30 yrs .........
I feel into a severe and I mean severe depression about 5 mths after she had passed away......

I have had no real closure with Mom's passing there is ashes now but my sis ( BTW never took the time of day for mom nor dad) has them and has supposed to be bringing them to me for a month now ........ya right......

I tend to her rose garden and to the other things she so dearly loved
It is hardes to lose your Mom IMHO and I think to me anyways it is because we no longer have that " where we have comefrom connection" IF that makes any sense to you .....
I had lost my Grama almost 2 yrs to the day of Mom and mom died on the day I buried my first husband in 1979

Alot of pain and memories of all came flooding back

I too despise this DD and I wish I could have mom back to as she used to be active laughing and just a wonderful woman ...........

We have so much in common my friend........
Know I am here for you PLEASE and will be til you tell me otherwise

Take care and let me know how today goes
Read my thread to MOm "Almost a yr" and if you want start one of your own it helps me immensely to talk to her thru this or just go on same thread I will bump ?bring it up for you

God Bless hun

I DO feel your pain and sadness and hatred for this DD that robs us and them

God Bless
LYN


    Contribute today to support Healing Well Forums...Donate @
 
Co Mod ..Crohns Forum
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DX with Crohns, Pyoderma Gangrenosum,Anxiety /Panic
 
Take my Hand ...I will WALK with you
 
When the GOING gets TOUGH..The TOUGH get GOING 
 
 God Bless All
 
LYN    
                                  

Post Edited (Howlyncat) : 6/20/2007 4:28:47 AM (GMT-6)


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 6/16/2007 7:25 AM (GMT -7)   
Surviveandthrive
Just checking in to see how you are doing my friend

Post when u can plz

LYN
    Contribute today to support Healing Well Forums...Donate @
 
Co Mod ..Crohns Forum
Moderator .......A/P Forum
Moderator ....Alzheimers Forum 
 
DX with Crohns, Pyoderma Gangrenosum,Anxiety /Panic
 
Take my Hand ...I will WALK with you
 
When the GOING gets TOUGH..The TOUGH get GOING 
 
 God Bless All
 
LYN    
                                  


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 6/19/2007 12:41 PM (GMT -7)   
Hi, not sure if I should comment or not. I had severe dementia a couple of years ago. Lost 80% of my memory at the time, getting much better now. I know at times I thought I was 18 (actually 36), couldn't understand who some people were (like my kids), couldn't understand why everything looked different and got mad at the changes, didn't understand what people were saying but very keen on the feelings in the atmosphere, got lost all the time walking on my street (I have lived there 31 years) and sometimes in my house.. I could go on and on...

I guess I just wanted to say is that the people who were with me day in and day out I knew even though I couldn't place how I knew them. What they said to me or in conversation, it took a long time, effort and energy to figure out what they were talking about. Like an animal though, I could sense if they were angry, happy, sad or excited. I think I got fear and excited confused though. I just didn't always understand their reasoning or what ideas they were trying to convey. I understood simple directions, although I would forget midstream sometimes. I knew who loved me and who didn't. People I don't know still come up and talk to me as if they knew me all their life and know personal details about me. But I don't know them, sometimes a face seems familiar and that is about it. I know if they are nice or not nice. That is about it. I knew my sister-in-law back then as the nice lady who took care of me. I didn't know her as family, just the person who fed me and took care of me (and apparently my kids too). My daughter then 8, I couldn't understand why so big for age 2, my sunshine, and sometimes she was someone I didn't know just some pesky kid that kept coming in my room. My son David was a year or so then. I didn't know him at all. (It kills me now to think about it). I know he was a good baby.

It seems like my head didn't know things, but my heart did. Your heart knows people you love and it never changes - even if you don't fully recognize them and have periods of mixed emotions. Now I see my kids and it is like that period of my life never happened, I recognize them fully just like I did prior to the dementia. ALthough we all know it did happen and there are a lot of fences to mend from it. I am extremely spiritual now. I believe there is an essence or spirit in us and once there is a connection or strong relationship between two people it will never go away. It may change, it may regress and it may grow, but it will always be there.

Your head just processes things...your heart knows things.
  Best wishes,
 
  Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurgitation, dementia/Alheimer's (improving); GERD; blood clots in eyes/vision loss, narcolepsy, rheumatic arthritis and arthralgia, IBS, ovarian cysts, raynauds, EBV/CFS, mild inflammation of liver and spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin, just off Provigil 
Previous 1996-2006 - discoid rash, hemi-pelagia, migraines, hands/feet sensory loss, anmesia, PTSD/Depression, imbalance, weakness and muscle spasms, shooting pain, dizziness, fine motor movement problems, miscarried 2 children & severe complications w/2 I managed to get out, False positive syphilis, swollen glands, high fine speckled & homogeneous ANA; Positive IgM; constant staph and strept UTI infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, high Methylmalonic acid, high Epithelial cell counts, off and on low red/white or pallet counts, hypothyroidism/Hashimoto's disease, postural hypotension, dyspnea, periods of hypertension/hypotension, lipedemia, mouth/lip ulcers, pneumonia, skin tightness/hardenes, ligament conjectures, weird purple pimple rashes on legs, hypopigmentation (leopard spots) on legs and arms, vein swelling, abnormal menustration, uterian fibroids and some of the current problems.  Rx: usually Toridol, nerve blockers and antibiotics. 
 
  P.S. You asked....  Probably forgot a few.


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 6/20/2007 3:30 AM (GMT -7)   
THanks for that
It is SO TRUE

I go on each day knowing Mom knew and dad does as well

Again thanks kris

God Bless
LYN
    Contribute today to support Healing Well Forums...Donate @
 
Co Mod ..Crohns Forum
Moderator .......A/P Forum
Moderator ....Alzheimers Forum 
 
DX with Crohns, Pyoderma Gangrenosum,Anxiety /Panic
 
Take my Hand ...I will WALK with you
 
When the GOING gets TOUGH..The TOUGH get GOING 
 
 God Bless All
 
LYN    
                                  


chilkootpass
Regular Member


Date Joined May 2006
Total Posts : 65
   Posted 6/23/2007 1:26 PM (GMT -7)   
To all my brothers and sisters here on the site, we are connected  in such a way only those who have walked in our shoes can relate, oh they mean well , they say I am sure you'll be alright or yes I lost a family member....But until you have walked down this road so traveled these days with sorrow , with love, with loss and with at times anger oh they can not possibly know the walk.. To all those who have and will be on this journey my prayers and thoughts are with you all. Renee aka Chillkoot
RA,chronicpain,asthma, allergies and back/neck injury and diabetes. Hubby has Alz,diabetes,epilepsy back injury with chronic pain.


SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 6/23/2007 1:34 PM (GMT -7)   
There is no cure for Alzheimer's or dementia but meds can help,but in time things will progress.......
SnowyLynne

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