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Nancy's story

3/6/2011

1 Comment

 

This story comes to us from Nancy Aderante.  Thank you for your touching story of devotion, love and caring. 
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I just want to say how wonderfully blessed it is for all who are caregivers. My husband is gone now, but I was his main caregiver for a time with Alzheimer's. He forgot how to walk and how to eat, had a feeding tube and was incontinent. I promised him he would never go into a nursing home and to the best of my ability I kept that promise with the exception of two days at the end when I stayed with him 24/7. It was hard but I loved him and wanted to take care of him and help him. I did have a hoyer lift and a chair so that I could get him out of bed, he had had one very bad bedsore which had to be debrided and he ended up having flap surgery. The grandchildren would come and although he didn't recognize them he would sing to them (he had been a squaredance caller) and tell them jokes which they remember very well. He couldn't remember them, but he could remember a whole squaredance tune. He left me in 2004 and I miss him every day; loved him so much and was sooo glad I could take care of him and among other things live up to my marriage vows I made before God.
1 Comment

Alzheimer's hits when you're only 50 years old

2/26/2011

5 Comments

 

This story comes to us from Sandy Gillaume.  We normally solicit stories of human triumph that allows us to smile, but I realize fully that before one can claim victory and find peace to smile about, one usually goes through turmoil and struggle.  Sandy, our prayers and thoughts go out to you and your husband.  Keep strong and let us know how you are doing.       
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My story begins back at the end of January 2010. That is when my husband was diagnosed with early onset dementia. He is only 50 years old. The doctors that diagnosed him said it was related to his alcoholism and hypertension. I had a really hard time dealing with this diagnosis, but I knew that Don was not the same man I had married 22 years prior. I knew that he had been having TIA's for several months. I could see the effects of them. I knew there was something wrong, but could not get him to go to the hospital or doctor. His excuse for many years was he did not have any insurance and he flat out refused to go. When I finally got him to the ER his blood presssure was off the charts and he was a very sick man. He spent 6 weeks in the hospital, detoxing and going thru some real changes. He was totally incontinent and just a completely different person. He was out of control. He kept trying to break out of the hospital. The kept him in a bed with a locked net over the bed. When the hospital figured he was ready to be released, they placed him in a healthcare facility. His Dad, sister and I had been checking out facilities, but then one morning came and they called and said, "He is being moved today." We had no choice. He is now in a different facility because the first one was horrible. They didn't even take care of him. I will not and cannot elaborate on it. Since he has been in this one, he is 100% better. He is no longer incontinent and he thinks he is ready to come home. I am just totally baffled and don't know what to do now. I am so confused on where do we go from here. All I have read tells me that dementia gets worse, but he just doesn't seem too bad. I sure could use some advise. Is there anyone out there that can help me????


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upon email correspondence, this is what I received from Sandy.
Hi Sharon,
Thank you for replying to me.  I appreciate your acknowledging me. 
I would appreciate it very much if you posted my story in the proper place.  I would never be able to write it again.  I, too have brain damage, due to an AVM bleed back in 2001, so my short term memory is horrible.
Please let me know when you post it and how to find it.
thank you so much,Sandy Guillaume
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2nd email exchange with Sandy after I informed her that her story was posted on the website. 
This is a reply from Sandy.

thank you so much.

I look forward to hearing from anyone.
I need support desperately.  Hopefully people will contact me.
thanx again,Sandy

Sdartz@aol.com    this is Sandy's email address if you want to send her a direct email. 
5 Comments

Jacqueline and her Gram

2/26/2011

0 Comments

 
This story comes to us from Jacqueline Faust.  Thank you for a very lovely story.  You and your grandmother are both very lucky!
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Quite simply, my Grandmother Eleanor, was diagnosed with Dementia when she was 85yrs old. Until that time she was driving and traveling and very 'with it'. It was as though one day she was fine: the next she wasn't. (I believe the Dementia was the result of a stroke.) My Grandmother had an amazing memory, she was great at doing math in her head and was a very independant woman. There was no warning, Dementia robbed her it seemed overnight. I moved her down to Florida to live with me after my Grandfather passed away. Everyone told me to put her in a Nursing Home. Everyone. But, I just couldn't. It was hard in the beginning trying to care for her and hold down a job. But, you see, she did the same for me. She worked in a factory and took care of my sister and I. She never gave up on us...although, I am sure there are times where she would have been justified in doing so. I have been taking care of her for 7 years now and it's so rewarding to know that she is in the best place she can be: Our home. I know it's not possible for everyone to do - but I thank God that I am able. He is teaching me so much about grace and patience...and I am still learning. Everyone deserves to be treated with Love, Respect and Dignity! My Gram just celebrated her 92nd Birthday and she seems pretty content in her little world...I'm glad I am a part of it.
0 Comments

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

Love never gives up.

2/25/2011

0 Comments

 
This story comes to us from Sherry Johnson.  Thank you for sharing.  Our thoughts are with you and your grandmother.  
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I take care of my 90 year old grandmother who is in late stage AD.  She does ok most days, and she is still mobile but very unsteady.  She has no Idea who any of her family members are.  The hardest thing to deal with is she lost 3 of her sons when she was not sick and they seem to be the 3 of the 5 children that she talks about.  She will ask "where are the boys?  Why won't they call me?  I'm their mother, but they won't call me." It's so sad because we don't want to tell her they have passed,  so we just tell her they love you grandma but just cant call right now.  You can see the pain in her eyes.  We have the house child proofed and she does ok but have an issue with sleeping.  As I type this, she is on a 48 hour day.  We have done everything we've read in books and tried it all but nothing seems to help. I love her so I will never give up with the grace of GOD.
0 Comments

Walking with Mom

2/25/2011

0 Comments

 

This story comes to us from Karen Dondero.  Karen, you're a very lucky girl that you can still take walks with your Mom.  Keep it up.  Walking is SO good for your loved one!
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Not much of a story. I love my Mom very much and I am blessed to be able to take care of her. She is 85 and was diagnosed in 2008. She is in the moderate to severe stage. Her health is good and we still are able to take long walks on her property. She often calls me Mom and that's an honor. My grandmother was a great lady and my Mom is as well. We do have our ups and downs with stubbornness but with prayer and patience we get things done. It's not always easy but if you put it in the right perspective you are rewarded.
0 Comments

An angel and her doll

2/23/2011

0 Comments

 
This story comes to us from Viola Charles.  I have heard that doll therapy works great with an AD patient.  Here is an example of that. Thank you Viola for sharing.  Your mom truly sounds like an angel with a sweet heart.  
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My mom has had Alzhiemers for 11years now. There are 7 siblings including my daughter that my mom raised for me. My mom just turned 88 in February.  My mom is an Angel - she does not know anybody but she does know me because I take care of her 24/7.  My mom raised so many of us plus alot of nieces and nephews,grandkids etc... She loves every little kid that passes her way.She has a doll that she loves to love all day long.  She feeds her, kisses her and covers her with a blanket.  If I try to touch the doll she will pull on her and tell me NO!!!! LOL! 

Everyone told me to put her in a nursing home but I refused.  It is very hard because I also take care of my Dad who is 92years old but he is sharp as a tack...whewww!  My mom has her bad days but mostly good days..It is so sad to see someone go though this terrible disease.  I wish I had my momma back!!!!!!! :**(
0 Comments

What a special bond between a daughter and her mom and dad!

2/18/2011

3 Comments

 
This story comes to us from Rebecca Fuson.  I've often heard the phrase "your parents take care of you when you are a baby, and when you grow up, you take care of your parents because they turn into a baby".  Rebecca, you are truly a wonderful daughter who reversed roles with your parents.  Thank you for sharing.   
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My mom was diagnosed with Alzheimer's in 2002. Everything went along pretty smoothly until July, 2007. On the 28th of July, 2007 we found out daddy had stage 4 colon cancer. His first words out of his mouth were, "What's going to happen to mom?" WE assured her that WE would take care of her. I quit my job to stay home and take care of Daddy. Daddy came home from the hospital under hospice care, to mine and he passed away on August 28, 2007. Mom did know what was going on and was pretty much out of it though. My mom had a history of having UTI's that didn't have the typical symptoms. The only symptom she had was a backache. Well, in November, 2007, she had gotten down to about 90lbs, wasn't eating and had a VERY bad UTI. It affected her Alzheimer's horribly! That was the first time she went under hospice care, under the advice of her neurologist, for Failure to Thrive. I was with her 24/7 until Sept '08. Mom was living with my little brother and family. Well, in Sept '08, we put mom in the 1st facility. I felt like someone had taken away my child!! I still didn't work at this time, so I could go and see mom as much as I wanted to. Sometimes I would go during the night, anytime I wanted to see mom, I was there. I made sure I was there for meals so I could feed her. Then, in Dec. '09 I had to start working. So, I got a job where I worked in the evenings, and I still got to spend pretty much as much time with mom as I wanted. I moved to days in January, so my time with mom became limited. The facility started only doing minimal care and I could tell!! I would complain to everyone who would listen. I even had to put perm marker spots on her in hidden locations to make sure she was getting her showers. So, in Sept. '10 I found a much better facility and I had mom moved there. She is under hospice care again, but this time because she's in the end stages of Alzheimer's. When she is up, she sits in a GeriChair, doesn't talk, stares at me or the wall. I still go as much as I can with working, and also in the process of moving. Of course, no-one knows how long the end stages of Alzheimer's can take, so I watch this process also. As for myself, I am having "anticipatory grief" in preparation for mom passing. Having panic times, as well as balling! . But, during taking care of them, especially mom because of the length, our bond has only gotten stronger and closer. Right after daddy passed away, I would sleep with mom in their bed, and as we went to sleep we would hold hands. Mom would say, "I don't think I could do this without you", to which I said to her, "you don't ever have to worry about that cause I'm stuck like glue to you!" I'm so very sad and scared that she somehow knows a little of what is going on and she's scared, and I won't be there when "it's" time. I told her not to go anywhere until I got there. I also told daddy he couldn't have her unless I was there. I hope that they know how very much they meant to me and still mean to me every day!!!
3 Comments

A son's love for his mom and dad

2/16/2011

4 Comments

 
This touching story comes to us from Mike Menster.  Thank you Mike for sharing, and bless your soul for the greatest gift that you gave to your parents.  If you believe in heaven, I would think they are watching over you right now, their faces brightened with big smiles.    
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Mother was in denial as was I to a point, but very quickly I realized that I had to take charge and make sure they were well cared for; I was the only one that could and would do it the right way. I'm divorced, no kids and at the time was 45 years old. I had to stop working all together because my Dad was over dosed on a very powerful anti-psychotic of which I never gave written or verbal consent. He went from the moderate stages of the disease to the end stages in 36 hours. Mom had her own memory disorders and she was totally unaware of what happened to Dad. I fought and fought to try and reverse what had been done to him with no luck whatsoever. The medical community, overall, DID NOT LIKE that I was well educated and well versed on this disease; they told me to go back to marketing and leave the medical issues to medical professionals. Dad passed away and then Mom followed him just 9 short months later. As a single man and a primary caregiver, my heart, my prayers and my thoughts go out to all who face the same or similiar situations. It is and was an honor, a priviledge and the most incredible experience to be there for them. As I have always stated, for all my life they were their for me, now it was my turn. Knowing what I do today and the life altering effects, the devastation, the loss of nearly everything in my life, I would do it all over again. There are very special memories, a special closeness to my folks that I will carry for the rest of my life. God's Blessing to all...........
4 Comments

Getting Buy-In Part 2 - My mom wants to divorce my dad...Match.Com?

2/11/2011

0 Comments

 
An incident occurred the other day.   Back in October, I posted that we are in the process of trying to convince my Mom to attend a Daycare facility.  It took about 3 months persuading Dad to agree that this was the right thing for Mom.  When the day came for Mom to go, she threw up a huge fight.  She started accusing Dad, me and my sister of wanting to drag her around against her will, only to abandon her.  Whoa - what a morning that was! 

It was a rather stressful day, especially for Dad because he had to absorb all of the verbal Karate chops and shield himself from emotional bombs that were going off all over the house. 

During Mom's tirade, my sister and I just had to crack up and laugh our hearts out because evidently Mom told Dad that she wanted to divorce him, find another man and elope with him.  

Well folks, I think my mom is still very beautiful but let's face it.  She's 73 years old, has moderate Alzheimer's disease, has been married to my Dad for the last 53 years, has never known any other man besides her husband, and she doesn't want to go anywhere without him.

I think my sister Sue made the mistake of using logic with her, and of course ended up with a catastrophic remark from Mom, "I can still go and find another man!  You go away from me!"  Yikes, don't piss her off again. 

A few hours later, Dave asked me how Mom was.  My reply?  "I think mom's searching on Match.COM.   :)
   
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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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