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Worried in Texas
Connie Moore
Monday, November 10, 2008 at 09:30 AMre: Worried in Texas
Bob DeMarco
Monday, November 10, 2008 at 12:17 PMConnie....
Wow. I experienced so many feeling and emotions while reading your comment that I could not keep track of them.
I often start having experieces with my mother that are hard to explain. She starts coughing for days at a time and soon I start coughing. I think its empathy. This might explain why you sometimes feel the disease is "contagious".
Reading your words I have the feeling that you are dealing with the situation very well. Of course, being able to share what you are feeling and experiencing really helps, I believe. Don't get me wrong, I understand how difficult it is being in the front row. It gets crazy at times and you get to feeling crazy.
For me, knowing that I am not alone really helps. Reading your comment told me once again, I am not alone. I remind myself of this all the time.
The one thing I found about Alzheimer's is you really get attached to the person you are caring for 24/7. To me this is a good thing, a happy thing, a stressful thing, and sometimes a wonderful thing. Most of the time very disconcerting. But, you get to feel and for me that is a good thing.
Alzheimer's almost impossible to understand unless you are in the front row.
Bobby
re: re: Worried in Texas
Connie Moore
Tuesday, November 11, 2008 at 07:28 AMBobby it is so hard until you are in the front seat living and loving some one with this disease to understand. I didn't think this would happen to us in fact I never really thought of what the effects might be and never reached out and touched someone going through it. I will forever be sorry that I did nothing until this happened to us. I now know the devastation this disease brings and the isolation the primary care giver feels. I will never make that mistake again. My husband is growing worse with each passing day things are happening so fast it's really hard to stay focused. My friends are now on this site, it's so sad to say, the ones we had before are gone, they couldn't take watching what is happening, but they don't understand nor does the familiy that we have and have never needed them more then we do now. They don't come because it's to hard YES it is hard but they are missing so much, when it's over they will say all the right things all the if only's or the what if's. I am questioned constantly when they do decide to call on the phone and they tell me not to worry they are praying for us. They say they pray for a miracle that he will be healed and not have this disease any more. God does heal people but sadly this is not one. God does grant us miracles living with us because everyday for every minute he rembers my name it is a blessing for me because the time grows short and he is very sick. He has congestive heart failure and COPD to go with the alzheimers, on the 31st he told me he was going to die from the congestive heart failure before the alzheimers. I know he is preparing me for his death. We have talked and I have told him when it's to hard and his time to go he is not to worry, yes I love him yes I will grieve but I will also know that when this man I love so much goes that he will go to a better place will have no more pain and I will join him when it comes my time. That is the only thing I can give him now is my love understanding and the knowledge that I will go on.
I am on a mission so I can help others, I want this web site published, I found it by accident and so many need to meet all you wonderful friends that have been my life line through what is and will be one of the worst periods of my life. I know others are suffering this same fate and I feel I need to help in what ever way I can. You have been so right about the journaling and I do it daily, I will continue to do so but right now I want to do everything in my power to help other find this site. I have contacted the paper in my town my husband is a veteran and today is veterans day and this is National Alzheimers Awareness month what better time to publicize this site. I have heard nothing from them but I will continue to write daily until I get a response. I have ask my aunt to contact her friend that has a televsion station and ask if they will help. Please if you have any suggestions write me. Thank you for all your concern and help. Connie
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Hi Bob, thank you for sharing what I am sure a lot of people are thinking about. I am the primary care giver of my husband he is 66 and I am 56 and he has alzheimers. It's so strange I have ask my self can this disease be contagous, no intellictually I know it is not but when you are taking care of your spouse 24/7 with this disease you become so worn out and tired. This disease is robbing me not only of the love of my life but sometimes I almost feel like I am getting it. He grows worse each day he reached a different level of the disease 10-31-08. We had gone to our granddaughters to see our 19 month old great grandson tricker treating. We had an early dinner with the kids and some of their friends he hasn't been comfortable going out for a while but our granddaughter that is more help then I can say talked her poppy in to going. He ate little and I got worried it was to much, I ask him if he wanted to go home and he said no, we got his food to go since everyone else had finished. We went to my granddaughters home and she dressed her son in a knights costume, his poppy was happy to see him but was not wanting to go out, again my granddaughter talked him into it and he agreed, he's a double amputee in a wheel chair. He went out for pictures and we planned to just go out for a little while I noticed that Ray wasn't joining in he was in a power chair but was following way behind. I ask my granddaughter if her poppy could ride the baby on his chair and let him take him to some house, with both parents at his side and me in the front taking pictures he began to laugh and for the first time in a long time I heard my husband laughing and happy. The evening ended and we started home. My husband was quiet for a long time then told me he needed to tell me something, he told me that his congestive heart failure was going to kill him before the alzheimers. I was shocked and uncertain what to say when I suddenly realized in his own way he was telling me good bye. I told him I loved him and we continued to talk and I knew I had to say the hardest thing I have ever had to say to him. I told him as much as I loved him and as hard as it would be without him that if life was becoming to hard and if he was nearing the end that he could go with the peace of knowing yes I love him and yes I will grieve but I would be happy in the knowledge he has lived his life in such a fashion that he would be going to a better place he would be happy he would be well and I would meet him there one day.
He seemed fine with that and it hasn't been mentioned since but something happened yesterday that made me realize he is entering the stage of alzheimers we all dread, I had gone grocery shopping early thinking he would not wake and be aware that I had gone out, I always leave a note telling him where I am if he wakes. I returned home to find him up very early, he ask where I had been and I told him. He ask what I was cooking and I told him he ate and then started watching TV, about two hours later I heard him screaming my name, fearing the worst I ran into his room, he was shaking and crying I ask what was wrong and he said he woke up and I was gone, I had been home over six hours when this happened, I assured him I was there and it would be Okay not to worry I would never leave him. I now know it is happening he is forgetting time and me. I see it on his face, the look is there, the uncertainty of his surroundings. I wonder some times am I getting this disease or is the stress of it all just becoming to much. I am tired and I am frightened it is so difficult watching this man I love suffer. I started a journal three months ago, it is my way of running from this disease but also keeping me grounded to survive this time of uncertainty. I know each care giver at some point or another wonders the same things I do are we getting Alzheimers, reading my journal I know I am not it is the strain I am under but I will continue writing because someday I know it could be me. Connie