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Sounds so familiar, yet so personal....

2/25/2011

2 Comments

 

This story comes to us from Diane Clevenger. She touches on so many aspects of the affliction caused by Alzheimer's disease, and identified gaps in our medical practice.  My family also went through a lengthy period of getting proper diagnosis - and regrets such as "had we known earlier, perhaps we could have done something....or we shouldn't have yelled and kept correcting Mom, etc.." surface daily.  The thing I have come to realize and would like to encourage all of you is this....  "YOU HAVE DONE YOUR BEST"...and we just have to keep on loving our loved ones.  Just like Diane and her step dad.    
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A bit about my mom - she was diagnosed with Alzheimer’s in 2009. We could see changes in her as early as 2006 but I guess we all just thought nothing was wrong and Alzheimer’s never entered our minds till about 2008 when things really started to get out of hand with her. She started calling me telling me the same story day after day some times 3 of 4 times in one day. Then she started saying someone was taking things out of her house. I kept telling her no one was taking anything out. I had told my step dad to go to the Doctors with her and talk to them about what was going on.  They ran test and kept telling us nothing was wrong. I went to Ohio after trying to deal with her calls and his daily to go to her Doctors and get answers still they said nothing wrong she is getting older they said. So I started my own research on Alzheimer’s and found myself with more questions then answers. Then on August 26, 2009 a day I will not forget (my Birthday) I get this phone call telling me mom was in jail. She had taken a knife after my step dad. (she did not hurt him or anything) but she was defending herself she felt he was harming her cause he did not understand what was going on and the only way he knew to get thru to her was to yell and she had enough and broke. Well the next few days was working with Lawyers and the court to get her here to VA. That was a good and bad thing I found out cause the Good part was she was tested here by 2 Doctors and I was told she was mid stage and the bad was trying to care for her and work at the same time. So my search for answers about this went on and I searched and read even more. The 36 hour day was a big help. Not knowing the area or anything my thought was daily is she going to be there when the kids got home from school so I started to arrange my schedule so that someone was there. That was hard to do. Then she would have days that all she did was cry.  I would try to comfort her and she did not want to be. But 10 mins later I could sit beside her and hold her and tell her everything was going to be okay. She did not want to admit anything was going on with her. My step dad would make the 6 hour trip almost every weekend to see her and that put a huge smile on her face. Then at Christmas he asked about her going back to Ohio. She wanted to go back also so I told him he had to get her a hearing test done and I would pay for her hearing aids. Done he said so I allowed her to go back. She did good for a while. She made mistakes while he worked he would call me each morning and tell me something she did. I told him to hang in there and reminded him that whatever he did he could not yell at her. My phone rang one night and He said that she had gotten all their meds.   Yes both hers and his and dumped out the bottles (he had them hidden) on the table he could not tell what was what or whose was whose.  I could hear her in the background saying “ I really screwed up “. I told him to Call CVS and tell them what happened and they would help so he did and took them and they got everything corrected for him. Around Feb. 2010 she started saying there were people in the basement.  She swore there was kids in the basement and coming in the house after her husband went to work and they were taking things. She would call me and tell me those boys are after her things.  I tried to to tell her no one was down there. Then May she started to wander from the house and dad was getting no sleep trying to keep up with her. He called me crying and I told him to take her to the ER.   If nothing else for him to get a good night's sleep. He did and then the next day we were told she had to go to a nursing home. I was already getting POA over her. SO then the looking for a nursing home for her began. That is where she is now. I got her in to Carriage Inn in Cadiz Ohio. I go up every time I can to see her. There is so much more I can tell you but this is long enough.
2 Comments
Laura link
2/25/2011 02:16:49 am

Your story sounds so similar to my own mother's. Looking back my mother started to have symptoms when she was around age 62 or so. But she was on depression medication and the doctors said it was the side effects from the medication. Subtle at first like telling me things several times, misplacing things, then progressing to getting lost in the car, etc. Then in 2002, she had almost died with gallstone pancreatitis, multi-system organ failure and spent a year+ hospitalized trying to recover. After that, she really began to nosedive with the memory. But she had tremendous aggression and violence instead of "quiet" memory loss. She would run into my house and tell me that my step-father was "the other Ray" and not the Ray she lived with. She would insist that I get him away from her and refuse to be around him. She would also hear people in other rooms. My poor step-father would call me constantly because of her erratic behavior. I really know what you are going through. She was on anti-psychotic meds and they actually seemed to make things worse. I would argue constantly with the doctors about her condition. She had to be put into a nursing home when she became a danger to herself. I will certainly keep you and your family in my prayers as you go through this.
Laura

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Diane Clevenger
2/26/2011 01:55:25 am

Laura
I fully understand what you are saying. When we were told nothing was wrong from her Doctors my step dad just did not know how to handle it. Mind you mom did have a hearing problem but had aids. As time went by of the not knowing what was going on she would call me telling me to get her away from dad he was going to hurt her I tried to reassure her he was not but the calls continued. I thought I would never have peace.
I do have 2 brothers and a sister and until I had to take control of everything for mom they did not want to believe this was happening to her someone that was always so strong and independent. My one brother still has not gone to see her he says he can not face seeing her like this. So every time I go to Ohio I call and ask will you go with me. The answer is always the same "I don't think I can handle it." It is going to be real hard when the times comes to say good bye to her.
I look back at the stories she has told me as her memory goes to the past where she was a little girl and growing up and I am thankful she told me those cause now I can help the nurses understand what she is talking about now days. the last time I went to see her I kinda had to laugh she does a lot of singing now esp when she is happy. You can not understand what she is singing but one word I could was Danny my step dads name so I knew it was about him and she had this big smile on her face. She does not know me by name anymore but I can see in her eyes she knows who I am.
She has a memory box outside her door and when I was there we took some pics and I placed them in it. My step dad called me and said they were looking at it and she told him those are the kids that came with Diane so I know she still knows me and always will I have faith and she is my best friend.
I love her with all my heart.
Diane

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    Author - Sharon Kim

    My mother was recently diagnosed with Alzheimer's.  It took our family 3 years to get proper diagnosis.  My sister and my father who are the primary caregivers for my mom are going through extreme challenges dealing with the impact of this disease.  This is what inspired me to create and dedicate 4URLOVE to all the caregivers of Alzheimer's patients in the world for their commitment, love, sacrifice and unfathomable patience. 

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