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I miss my mom and she isn't even gone yet.
sunnymac
Posted: Saturday, February 4, 2012 8:31 AM
Joined: 2/1/2012
Posts: 3


  

My profile picture is one of the paintings my mother painted before her disease, after the onset of the disease she didn't know what a paint brush was.   

She started to show symptoms in '98 and was diagnosed in '99.  

Unfortunately I live in different place than she does, so all the work fell to my sister. I am so grateful that she is there. 

 

 

My Dad died in '98 and I blamed mother for not caring for him better, but I now know it was the disease. Now I feel guilty for blaming her.   

Her greatest fear was getting Alzheimer’s until she got it.   

 I've been mourning the loss of my mother since '99. When I'd see her she always asked if I was her sister. I'm sooo grateful for my sister who's done so much of the care giving, until we finally had to put her in a residential facility. That lasted until she started acting out very in  non-appropriate behaviors and she had to be placed in a more restrictive place. 

 

 


File Attachment(s):
Momscowhead.jpg (157265 bytes)
Momszebras.jpg (108016 bytes)

CarllyJean
Posted: Saturday, February 4, 2012 9:35 AM
Joined: 12/30/2011
Posts: 47


My mom just recently passed away after a 10 plus year struggle with AD.  I missed my mom. like you, for many years before she was gone.  I will always miss her.    A school counselor where I teach suggested reading about anticipatory grief.  The feelings are very real.  Alzheimer's is truly the "long goodbye".  Wishing you peace, C.  The paintings are amazing.  Such talent.  What a gift to help remember her by.
SadinHeart
Posted: Wednesday, February 8, 2012 1:34 PM
Joined: 12/15/2011
Posts: 403


I called my mom every day for my entire adult life. When she was close to me I called her in the morning and went to see her every day after work. When she and dad were okay, i called every day and loved to listen to her stories. My mom was such a happy person. Dad never liked to talk on the phone but he would at least say hello and that he was doing fine.

 

Since October my mom forgot how to use the phone, but she was close to me until mid December so I would go see her every day. Since mid December she is far away from me now, so I go see her every weekend or every other weekend. I am no longer able to talk to her. She is on her last days.

 

I miss talking to my mom.   Like you say, she is not gone but she is gone.


Daddy's Girl
Posted: Friday, March 9, 2012 7:58 PM
Joined: 3/9/2012
Posts: 1


I am the sole caregiver for my mom who has advanced Alz, I know how you feel, my mom as I have known her is gone but she is still here. She mostly doesn't know who I am, she mostly is in her own world which I can't get into. When she looks scared all I can do is hug her.  I lost my dad 2 years ago this July, he had Parkinson's Disease. They both came to live with me 5 years ago. I miss my dad so much, my mom doesn't know that he has passed away and asks where he is everyday. It is so sad to look at my mom and see that lost look in her eyes. I never thought it was going to be like this. I miss having my mom be able to comfort me in my grief over dad and dad is not here to help me with my grief in loosing mom.
kathy10106
Posted: Thursday, March 15, 2012 1:39 AM
Joined: 12/30/2011
Posts: 5


I can so relate to all of you.  Mom looks like my mom and has the same smile as my mom but she isnt mom....Mom does'nt even know who I am and I have been the one caring for her for the last going on 8 yrs.  She does'nt have alzheimers as far as I know...they diagnosed her as dementia.  Like its a huge difference right?  She can't do anything for herself...getting a glass of water, feeding herself, using the bathroom or even dressing herself.  Now I took care of people with alzheimer's and dementia for years I was an STNA and worked in multiple hospitals and nursing homes and at that time it never bothered me....now that its my mom my whole life has changed. 
She got to where she was falling all the time so I got hospice involved and its the best thing Ive done.  She now has a hospital bed in my dining room, a w/c cause she can no longer stand and a hoyer lift since we cant lift her..we have an aide 5 days a week and a nurse that comes in twice a week and now we have visiting physicians...what a  blessing but at the end of the day she still dont know me, is very tearful and upset...thank God for ativan.  I'll type more soon but its late and I would like to hit the sack....ttyl
kathy10106
Posted: Thursday, March 15, 2012 1:44 AM
Joined: 12/30/2011
Posts: 5


kathy10106 wrote:
I can so relate to all of you.  Mom looks like my mom and has the same smile as my mom but she isnt mom....Mom does'nt even know who I am and I have been the one caring for her for the last going on 8 yrs.  She does'nt have alzheimers as far as I know...they diagnosed her as dementia.  Like its a huge difference right?  She can't do anything for herself...getting a glass of water, feeding herself, using the bathroom or even dressing herself.  Now I took care of people with alzheimer's and dementia for years I was an STNA and worked in multiple hospitals and nursing homes and at that time it never bothered me....now that its my mom my whole life has changed. 
She got to where she was falling all the time so I got hospice involved and its the best thing Ive done.  She now has a hospital bed in my dining room, a w/c cause she can no longer stand and a hoyer lift since we cant lift her..we have an aide 5 days a week and a nurse that comes in twice a week and now we have visiting physicians...what a  blessing but at the end of the day she still dont know me, is very tearful and upset...thank God for ativan.  I'll type more soon but its late and I would like to hit the sack....ttyl

 

 

Keep smiling and keep on keepin on   



Oceanbum
Posted: Tuesday, March 20, 2012 3:00 PM
Joined: 3/11/2012
Posts: 433


I can relate to this, too. I am the youngest of 4 children and the only daughter. So I have always been my Mom's baby girl. We have always been best friends. I can't ever remember a fight or even cross words between us. I could never understand the girls I went to school with talking about these huge fights they had with their Mother's. I couldn't even imagine fighting with my Mom that way! 

 

So now here we are 30 years later and I find myself losing my best friend little by little, day by day. It is, as you all are well aware, excrutiating. We used to talk on the phone almost daily. Her and Dad live around the corner and a few blocks away from me so I would walk over there of an evening and visit or go over during the day. Me and Mom would just sit with a cup of coffee and just talk - sometimes about nothing at all. I enjoyed just spending time with her. Now I find myself wanting to pick up the phone or walk over for a visit - and I can't. She's not there. She's at the nursing home. She can't talk on the phone anymore. She can't sit with a cup of coffe and talk anymore. We can't sit and talk about nothing for hours anymore. I hate it - I hate this disease! It has robbed me of my Mom, of my best friend! I know she's still there and I feel guilty for feeling this way. But the woman that I have known for all these years is gone. And she's never coming back. It's so unfair!

 

I'm so glad to have found this site. To know that there are others out there who feel the same way I do makes me feel alot better. And to know I have somewhere to go to just "talk it out" helps.

 

I miss Mom and I know I will every day for the rest of my life. Even if she isn't gone I still miss the times we had and can never have again. But I will still cherish the times we had because I know they meant the world to both of us!

 


Cara
Posted: Tuesday, April 10, 2012 11:22 PM
Joined: 4/10/2012
Posts: 21


Wow, as soon as I saw this discussion it caught my eyes instantly.  I am sorry for your losses.  After a lot of thought, I had decided not to post any further photos of my mother after she became ill.  My mother was beautiful and never left the house without her hair, make up and clothing put together.  Something that she always took pride in, just left her body and mind.  It's almost as if she had a lobotomy performed against her will.  Her spirit, her values, her likes and dislikes, her expressive gestures, her smile and laugh just vanished.  I thought, who is this woman occupying my mother's body?   A woman slightly resembling my mother was wearing her clothes that were too big, inappropriate and hadn't been washed.   


My mother glowed of bright rays of light composed of the entire spectrum of colors. Gradually they dimmed and one by one flickered dimly until each of them burned out.   It was frightening because I knew that although she was walking and talking and trying desperately to fool everyone that she was physically, intellectually and emotionally intact, it was a facade.  My mother faded away and had transformed into an unrecognizable woman that really wasn't my mother.  My mother died while she was living.  In private, my mother would say Cara, I'm not living, I'm just Existing.  I don't show photos of my mother towards the end because her life already ended and she would never want to be seen in that way. This is a cruel disease and the memories everlasting for those of us who are caregivers.  I pray for strength for all those experiencing this dreadful disease and hope that we see an end to it in my lifetime.  


Sunny, your mother was very artistic and talented before she became ill. Those are the days to try to remember.  Thanks,


Cara



sunnymac
Posted: Wednesday, April 11, 2012 8:53 AM
Joined: 2/1/2012
Posts: 3


Cara, thank you for sharing. Your Mom's story is so like my Mom's. She was Art League, Museum Association, etc. Always dressed in the latest styles, hair colored to hide gray, like you said, she " glowed of bright rays of light composed of the entire spectrum of colors. Gradually they dimmed and one by one flickered dimly until each of them burned out". I like the way you said it. It describes the slide into darkness so much better than I did. It does brings back to memory one of the funny moments of before we had to move her out of the house we grew up in. We went to see her and caught her using mascara to cover her roots. She said she couldn't find her box of colors. We found it in the same place she had always kept it. She hadn't been diagnosed at the time.  I've attached the last pictures; one of her by herself, one with my sister and niece, and another of her paintings.  .

Thank You for describing the whole thing so eloquently, Sunny    


File Attachment(s):
MOM(2).bmp (38534 bytes)
momscacti.jpg (165806 bytes)
MOM, Tammy & Erin.bmp (38534 bytes)

Cara
Posted: Thursday, April 12, 2012 10:35 AM
Joined: 4/10/2012
Posts: 21


Dear Sunny,


Thank you so much for your kind words.  While I was responding to what you had written the other night, I thought back about how it felt to lose my mother right before my eyes.  As I wrote it, I just sobbed because it was an analogy I had never really thought about in that way.   I don't think people understand what Alzheimer's really is and lately I've been thinking about how to describe it to others.  I've read many different descriptions but none really give an actual photo or a vivid picture that everyone can relate to in their minds.  I formed a memory walk group and have thought about how to raise money from people who don't know what Alzheimer's is.  However, last year's walk was a great turn out compared to previous years.  


Now let me comment on the absolutely beautiful picture of your mother.  The second I looked at her, I had many feelings about what I thought she portrays. I could be way off base.  First of all, she is really stunning but my immediate reaction is elegant.  Not many woman are elegant, at least not to me.   She reminds me of someone extremely put together all the time and very particular about her appearance as well as many other things in life.  I'll bet she would be elated and even surprised by your wonderful compliments about her but especially in regard to her artistic ability.  I admire artsy people.  There's depth to their personalities, not to imply, others don't have the same qualities.  They usually don't mind being alone with themselves.  Now, there's a perfect picture of someone that people would never suspect a diagnosis of Alzheimer's. Put that photo wherever you can.  In fact, I would send it to the Alzheimer's Assn.  She looks youthful.  Her oil paintings replicate your mother's refined beauty .  I couldn't open the last one.  Thank you for writing back and your wonderful heartfelt words.  My mother loved writing and so do I.  I'm new to this and don't know how to correspond via email.  I'll check it out.  Cara


Cara
Posted: Thursday, April 12, 2012 10:54 AM
Joined: 4/10/2012
Posts: 21


Dear SadHeart,


I just read that your mother passed away in February this year.  I am so sorry.  I know how that feels and I cried when I read your story.  The one thing I admire about you is that you were always close with your mother and she left her knowing you always loved her.  Sometimes I'm not sure if my mother ever knew how much I really loved her.  My birth father passed away in February also, (also of Alzheiemers?) and although we had our disagreements, I'm not sure if he knew either, how important he was to me. I have to believe they know now.  Cara


Cara
Posted: Thursday, April 12, 2012 12:06 PM
Joined: 4/10/2012
Posts: 21


Hi SadHeart,

I wrote a reply to you earlier under this topic but since I am new to this section of the Alzheimer's Connect I am learning how to use it.  See my comment below.  My heart goes out to you.  Cara


sunnymac
Posted: Friday, April 13, 2012 2:11 PM
Joined: 2/1/2012
Posts: 3


Thank you so much for the kind words about my mother and her elegance. Your description is so spot on it made me cry, but since 1999 all I had to do is think of mother, and it brought tears to my eyes. Yes, Mother was a true southern lady and she would be so embarrassed to see what has become of her. Before she got so debilitated that she couldn't get out of bed by herself, the nurses would tell us how she had kicked nurses and cussed them out. They told us about the personality changes, but we were not prepared for it when it changed. My mother was a true christian lady and I never heard her use curse words. I didn't know she even knew those words.

Thank You, Cara, for your kind words of encouragement and helping me see my mother through anothers eyes.

Sunny

 


Cara
Posted: Friday, April 13, 2012 3:42 PM
Joined: 4/10/2012
Posts: 21


My dear Sunny,  My mother too, was always dignified, loving and loved to be loved. She realized her mind was going and became very angry.  She said and did things she would never say or do.  Something tells me, we have similar inner emotions about our mothers that were somewhat mixed before they developed this disease.  I am very glad to know you and I have to believe our mothers know and see how we really feel about them.  I will say no more right now because it makes me cry.  Warmly,  Cara