This post comes to us from Jean D'Amore.  
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I found your website today and have been reading non stop. It is so reassuring when you discover that others go through the same experiences as you have when it comes to being a caregiver of a loved one with Alzheimer's. I care for my husband's mom. She is 94, a below the knee amputee and mostly in a wheel chair. The best thing I was able to do for myself was find a medical Day Care that mom now attends 3 days a week. Every time we are ready to go she asks if I am taking her to "that place" again and then tells me it is stupid. I blame her doctor...it isn't me who insists, but the doctor. This helps her reluctantly put on her coat and go. As of late, she is dealing with phantom pain. It seems to be severe and I think she believes it is new. The reality of the situation is that she has had this pain for 14 years. I had her checked out by the appropriate doctor for this situation and he prescribed a lidoderm patch. She seems to be in more pain when I or my husband are in the room with her. If I listen over the baby monitor, there are no sounds of pain, so it is difficult to know if this is her acting out or real. When I ask if the patch is helping, she says she needs pain pills. SO, now I am administering this really powerful pain medication....TIC TACS. I have four colors...when these stop working we plan to move to the next color. This has only been going on a few days, so not sure this is working and I will bring her back to the doctor if this lasts more than another week. Mom doesn't need physical care as much as she needs supervision. It seems every time I go out for a brief time she manages to get into trouble. For these reasons I don't get out much. Sometimes this is ok...sometimes it is not and I get somewhat depressed. My husband takes over most evenings, so I get out a little then. And thank goodness for my daycare days. I work on one of them and the other two I generally run all the errands I cannot do when mom is home. I'm glad I found your website, I will continue to visit and also look for your posts on Facebook.

This story comes to us from Rhonda Brantley.  Wow, I wonder how teenagers deal with parents afflicted with Alzheimer's.  
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I am a 24/7 caregiver. My husband was diagnosed with Early Onset AD in October 2007 and is about stage 5.5 We have seven children, the youngest was 14 when he was diagnosed. Sad that there is very little out there to assist with teen grief. Forced to close a large business, I returned to school and now build websites at home. Its certainly sometimes hard to concentrate on the tasks at hand as at this stage he's a pretty needy guy. We've been through one clinical trial and find that any help coming in for just a couple of hours a few days a week is too much distraction to the routine and routine is critical at this point. I get out on Wednesdays to lunch with friends or just wander around Walmart, but its not enough. In the beginning, I just took it all on myself not wanting to burden anyone else with it. Now, I share. I began writing about daily living with Alzheimer's to document my feelings and plight, issues, stories and it certainly helps. You can find my blog www.alzheimersdiagnosis.blogspot.com. Thanks ~ RB

The other day, I was so annoyed with myself I wanted to scream.  I struggled for 18hours straight to recall the name of a dish I had.  Over the weekend, Dave and I went to this charming Italian restaurant and had a fantastic and memorable dinner.   I could recall the entire evening with such clarity.  Walking up to this funky restaurant, being surprised at the dumpy location and seeing the metal bars outside the restaurant entrance wondering about our safety.  Walking in to this empty place right at six o’clock when the place opened, thinking will anybody else dine here tonight?  Within 15 minutes, our perceptions completely changing, congratulating each other for finding a dining gem in the rough.  The dinner, the atmosphere, the wine, the crowd, the service…oh my goodness, everything was perfect.  Except that now, I could not recall the name of the dish I sooo enjoyed.  I kept urging my brain to recall the name.  I could recollect the smell, the feeling that evoked in me with every bite, the look of the huge bowl full of hot steaming red tomato broth that nestled the juicy mussels, clams and white fish and a perfectly broiled giant prawn on top.   But oh what was the name of that dish?  I was so frustrated.  I even knew the dish started with a letter C.  But the only name that kept swimming around my head as if to taunt me was bouillabaisse.  I silently yelled to myself, “no idiot, it’s not BOUILLABAISSE.  That’s French.  I had Italian.  The name is fish stew in Italian!  It starts with a C!” 

It went on for 18 hours.  I refused to look it up.  Instead, I thought and thought and thought.  I went to bed thinking about it.  I woke up in the morning and thought about it. 

Then magically around 10am in the morning, it hit me.  It’s CIOPPINO!  Of course!  How could I forget? 

Forgetting a simple, random and almost useless fact happens to me from time to time.  I wasn’t always like this.  In fact, I used to be so proud of my memory.  I could recall a name of a person I met at a mixer with no problem.  I could immediately call up a name of a strange dish or a name of a restaurant we just passed by as if I had known it all my life. 

 Now days, with more exposure and knowledge I have about Alzheimer’s disease, when I forget to recall something my thoughts race to wonder if it’s a symptom of Alzheimer’s disease for me.  With recent studies pointing to genetic disposition of getting this disease, I think about the fact that my maternal grandmother had Alzheimer’s.  I think about my mom currently suffering from it.  I think about me.  I think about my sister.  I think about my daughter.  I think about my future granddaughter.  My thoughts began to cry out, “I am only 46.  I’m too young to be forgetting simple things.“  Then I recall the Purple Sunshine community posts.  “My mom is 50 and she has had Alzheimer’s for the last 4 years….  My husband was diagnosed with AD at age 50…”.

 For those of us who are exposed to Alzheimer’s patients, we are so painfully aware of the devastating nature of this disease.  It’s too easy to get caught up in the fear of possibly getting afflicted with the disease ourselves.  I posed this question to our Purple Sunshine community and about three quarter of respondents said they live in fear that they will be afflicted with Alzheimer’s.  Surprisingly, about a quarter of them said while it’s a thought they have, they don’t live in fear.   I applaud the people who are living strong despite the fear. 

If anyone is worried, the best thing you can do for yourself is get educated, find a support group, and make lifestyle changes…NOW.  Make changes so you eat better, get exercise, do things to stimulate your brain, and think positively.  In my case, I have pretty much completely removed all white flour and rice, white sugar, sodas, junk foods such as store bought chips, cookies and snacks from my cupboard.  I have also made a commitment to exercise at least 20 minutes a day.  I’m also learning to do brand new things.  I’ve started a blog site.  I have learned stock trading.  I am reading financial news.   All of these things are brand new for me from a year ago.   I know I will continue to have moments where I forget names of dishes, names of people, name of places I had visited.  I also know I will force my brain to recollect the answer, and I will not rest until it does.  I also know I will not be on TV to play Jeopardy… but that’s OK.  I’m living not in fear, but despite it.  I choose to live strong and take each day for what it is.  The fear that I too may be afflicted with Alzheimer’s disease the way my grandmother was, and the way my mother is will persist.  But it will only be a fleeting thought, living dormant in the back of my mind.  Live strong.  Live courageously.  Live well despite the fear.         

This story comes to us from Marilyn Fournet.  We feel your pain, longing and heartache.  It's also great to know that your husband is in a very good place receiving quality care.
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I cared for my husband at home until I moved here to Oxford, where I could put him in the VA Home here. Although it was very stressful and though I ended up with pneumonia because I was so run down, I still resisted parting with him. He gets good care at the home though and I live a short distance away, so I see him frequently. He talks a lot and we can't carry on a real conversation, but I can still make him laugh and he still knows me. They do the best they can with their patients. Those in his ward a nearly all World War II veterans and they are treated with respect. The activity director has sing-alongs and she provides simple games like hitting a ball back and forth. But even though I feel very fortunate to have him there, I often cry all the way home because it's so difficult seeing him like he is and remembering how he was. I still miss him. My heart goes out to other caretakers. I know how hard it can be to see a loved one slipping away from you. Alzheimer's is a terrible disease.

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.