March 26, 2016 - This was the first punch in the stomach for me. I call "punch in the stomach" a new realization or something that happens that makes me face reality when I have been trying to ignore it. Here is mine, it was Saturday before Easter and I just made my grandkids 5 Easter baskets and gave them to Bob to hide in the basement like he has always done. The next morning when the kids arrived, they asked if PawPaw had hidden the baskets and did he hide them in hard places to find. I said lets ask him, when we asked PawPaw that question, he said I don't know what you are talking about. I said remember yesterday when I gave you the kids Easter baskets and he said no! This was my punch in the stomach. My first with Bob, I knew then something was wrong. My son-in-law Nick went downstairs and found them just sitting all together in the back of the basement not hidden. Up to this time Bob was forgetful but just the normal stuff. I just thought he tuned me out, I was always saying, I told you that this morning or we talked about that and would just be really annoyed with him.
Up to this point Bob and I lived a wonderful, fulfilling, blessed life. I retired in 2000 at the age of 50, I was offered a deal I could not refuse from AT&T and Bob retired in 2002. I was able to take care of my Mom before she died in May, 2002 and then God blessed us with the start of our grandchildren. Kylie, the first, was born in August of 2003 and I started watching her full time, while Julie went back to work. Bob started working part time at Home Depot. Then Leah came along in December, 2003. Everything was wonderful. Dylan arrived in November of 2006 and Sissy in February of 2007. After Dylan and Sissy arrived I asked Bob to quit Home Depot because I was not able to take care of 4 kids under 3, which he did. Charlie came along in July of 2008. We were a very happy family, all kids were healthy and happy. Bob would be forgetful but nothing I worried about at all. I mostly chalked it up as his selective hearing.
After the "punch in the stomach" or significant emotional event. I told Bob I wanted to go to the doctor with him and explain my concerns. Bob said I didn't have to go and he would go and tell him.
Bob did go to the doctor and told him and he asked him some questions and told him it was just normal forgetful things and not be concerned. I was not happy with this at all.
April, 27, 2016 - I went with Bob on his next appointment and I explained to the Doctor my concerns, he then gave Bob the Alzheimer test that Bob passed with flying colors and decided that his Omeprazole medicine might be causing his issues and to stop taking it.
I still was not happy but I thought, wouldn't it be wonderful if the medicine was causing his problems but I felt like in the pit of my stomach that this was not the problem. I would just get aggravated at Bob when he wouldn't remember conversations we had or things I told him. Even friends that had conversations with Bob said that he would ask them a question and then 10 minutes later ask the same question.
Well, in June of 2017 we went on a vacation with our whole family to Washington DC. We had a wonderful time but Bob had trouble understanding what we were doing everyday and how we got to places. Now this was real different from Bob normally, he always has an innate sense of direction but he could not get a grip on taking the metro, which we did everyday. I, on the other hand have no sense of direction and always relied on Bob to get me to places. One time on our vacation Bob and I were going to have to get back to our hotel by ourselves. Brian sat down with both of us and really explained how to get back and I knew I really had to understand what he was telling me. Bob had no clue on how to get back, luckily I was able to get us back. Another "punch in the stomach".
September of 2017, we went on another vacation with our friends to the Grand Canyon. We flew to Phoenix, rented a car and drove to Sedona, AZ. Then we took a train to the Grand Canyon. It was a wonderful trip but again Bob couldn't understand what we were going to do everyday. I even gave him his own agenda, to alleviate stress but it did not help. I had to constantly tell him every step of the way what we were doing. I asked my friend Steve, if he could tell something was wrong with Bob and he said definitely, he is having trouble.
After those two trips, I told Bob that we needed to go back to the doctor. We made an appointment with the nurse practitioner Ola on November 9, 2017. She listened to all my examples of his problem and started Bob on Donezipil (Aricept) right away. She thinks Bob does have some dementia issues. I did not like the diagnosis but I was glad that finally someone listened to me and we could finally get some help.
Ola did order a MRI also which also showed altered white matter worsened from his previous MRI. She thought Bob had Vascular Dementia, because his blood pressure had been high.
December 29, 2017 - Ola also put Bob on Crestor for his high cholesterol.
I told Bob after the holidays I was going to call Joanne Norton that ran a study thru Washington University on Dementia and see if I can get him in it. Bob agreed.
January 4, 2018, I called Joanne Norton and updated her on Bob and she said they would like him to join the study.
February 2, 2018 - We had our first interview at Washington University. We met with a social worker, nurse and Psychiatrist. We were there for 4 hours. After, all the meetings we met with the nurse and psychiatrist and the psychiatrist informed us that Bob has mild Alzheimer. He used the "A" word. Up to this time we never used the A word only called it dementia. Another punch in the stomach. He told us that Bob is on all the right medicines and that we were doing everything right. We had another appointment at Wash. U which they took skin biopsies and testing for a baseline. Bob will also get 2 PET scans, MRI and lumbar puncture. After that is all done we will only meet once a year to test Bob on his progression.
We have had a lot of downs after all this, much harder on Bob accepting this disease. I told Bob we were going to fight it and fight it hard. Bob realizes that there is probably nothing they can do for him but he wants to do everything he can so maybe they can find a cure for this terrible disease. Because we have children and grandchildren, maybe some day they will see a cure.
Since the diagnosis, the only other significant problem we had are some anxiety issues. Bob has had several panic attacks which he never had before, where it has left him crying uncontrollable. We took this up with Ola on our next visit and she had given us some Xanax to take if and when he has another one. Since Bob is taking more medicine I have bought him a pill box for each day, which helps. The problem was taking the night medicine, he kept forgetting that one. So I set Alexa up to go off every night at 7:30pm and then I ask Bob if he has taken his night time pill and most of the time he had not taken it. Now Alexa goes off every night at 7:30 and every night Bob says, do I need to leave Daisy out and every night I say no, did you take your night time pill? He cannot remember the 7:30 alarm is for his pill. Again this is our new normal.
April 11, 2018 - I am finding when we have a lot of things to do in a day and different from our normal routine, Bob gets nervous and it can lead to a bigger problem, so I have to really watch this situation. Well, it happened on Wednesday. I had to get Bob up at 6:30am, he normally doesn't get up till around 8:30 or 9am because Arnold fireside was going to install our new mantle around 8 or 8:30 and I had to take Dylan to school like normal but had to run to Walmart afterwards and be home by 9 because then Bob had to go get an eye exam for new glasses because he broke his the day before. I was home at 9am, Bob left for his eye exam, everything was good. Bob came home about 10am and I reminded him we need to leave for lunch at 11:10am to meet his brother and sisters. Before we left Bob was trying to hang a picture over the fireplace and was having trouble and getting aggravated, finally I said you need to stop because we have to leave. We left for lunch and I thought we would calm down being with his siblings but it was escalating. Even Jim our brother-in-law could tell Bob was nervous. Bob said if I had one of those pills I would take it now because I am really nervous. I said to Bob I have one in my purse, do you want it and he said "yes", so I gave it to him and after awhile he started calming down. At least we caught it before he really lost it. The rest of the day he was fine. I wouldn't let him drive anymore that day because of taking the Xanax, and that was ok.
Bob has mild Alzheimer disease, which means most people would not even notice anything was wrong with him. He can still drive fine, I watch him like a hawk when he drives and nothing has diminished with his driving. The only people that notice anything wrong are myself and the kids. Some friends that have been around him, like on vacation, have seen it too. We are hoping and praying for a slow progression. Sometimes, even myself, I have times where things are going so well and I think maybe we are all wrong and that he is fine but then something happens and I know we are not wrong.
Up to this point Bob and I lived a wonderful, fulfilling, blessed life. I retired in 2000 at the age of 50, I was offered a deal I could not refuse from AT&T and Bob retired in 2002. I was able to take care of my Mom before she died in May, 2002 and then God blessed us with the start of our grandchildren. Kylie, the first, was born in August of 2003 and I started watching her full time, while Julie went back to work. Bob started working part time at Home Depot. Then Leah came along in December, 2003. Everything was wonderful. Dylan arrived in November of 2006 and Sissy in February of 2007. After Dylan and Sissy arrived I asked Bob to quit Home Depot because I was not able to take care of 4 kids under 3, which he did. Charlie came along in July of 2008. We were a very happy family, all kids were healthy and happy. Bob would be forgetful but nothing I worried about at all. I mostly chalked it up as his selective hearing.
After the "punch in the stomach" or significant emotional event. I told Bob I wanted to go to the doctor with him and explain my concerns. Bob said I didn't have to go and he would go and tell him.
Bob did go to the doctor and told him and he asked him some questions and told him it was just normal forgetful things and not be concerned. I was not happy with this at all.
April, 27, 2016 - I went with Bob on his next appointment and I explained to the Doctor my concerns, he then gave Bob the Alzheimer test that Bob passed with flying colors and decided that his Omeprazole medicine might be causing his issues and to stop taking it.
I still was not happy but I thought, wouldn't it be wonderful if the medicine was causing his problems but I felt like in the pit of my stomach that this was not the problem. I would just get aggravated at Bob when he wouldn't remember conversations we had or things I told him. Even friends that had conversations with Bob said that he would ask them a question and then 10 minutes later ask the same question.
Well, in June of 2017 we went on a vacation with our whole family to Washington DC. We had a wonderful time but Bob had trouble understanding what we were doing everyday and how we got to places. Now this was real different from Bob normally, he always has an innate sense of direction but he could not get a grip on taking the metro, which we did everyday. I, on the other hand have no sense of direction and always relied on Bob to get me to places. One time on our vacation Bob and I were going to have to get back to our hotel by ourselves. Brian sat down with both of us and really explained how to get back and I knew I really had to understand what he was telling me. Bob had no clue on how to get back, luckily I was able to get us back. Another "punch in the stomach".
September of 2017, we went on another vacation with our friends to the Grand Canyon. We flew to Phoenix, rented a car and drove to Sedona, AZ. Then we took a train to the Grand Canyon. It was a wonderful trip but again Bob couldn't understand what we were going to do everyday. I even gave him his own agenda, to alleviate stress but it did not help. I had to constantly tell him every step of the way what we were doing. I asked my friend Steve, if he could tell something was wrong with Bob and he said definitely, he is having trouble.
After those two trips, I told Bob that we needed to go back to the doctor. We made an appointment with the nurse practitioner Ola on November 9, 2017. She listened to all my examples of his problem and started Bob on Donezipil (Aricept) right away. She thinks Bob does have some dementia issues. I did not like the diagnosis but I was glad that finally someone listened to me and we could finally get some help.
Ola did order a MRI also which also showed altered white matter worsened from his previous MRI. She thought Bob had Vascular Dementia, because his blood pressure had been high.
December 29, 2017 - Ola also put Bob on Crestor for his high cholesterol.
I told Bob after the holidays I was going to call Joanne Norton that ran a study thru Washington University on Dementia and see if I can get him in it. Bob agreed.
January 4, 2018, I called Joanne Norton and updated her on Bob and she said they would like him to join the study.
February 2, 2018 - We had our first interview at Washington University. We met with a social worker, nurse and Psychiatrist. We were there for 4 hours. After, all the meetings we met with the nurse and psychiatrist and the psychiatrist informed us that Bob has mild Alzheimer. He used the "A" word. Up to this time we never used the A word only called it dementia. Another punch in the stomach. He told us that Bob is on all the right medicines and that we were doing everything right. We had another appointment at Wash. U which they took skin biopsies and testing for a baseline. Bob will also get 2 PET scans, MRI and lumbar puncture. After that is all done we will only meet once a year to test Bob on his progression.
We have had a lot of downs after all this, much harder on Bob accepting this disease. I told Bob we were going to fight it and fight it hard. Bob realizes that there is probably nothing they can do for him but he wants to do everything he can so maybe they can find a cure for this terrible disease. Because we have children and grandchildren, maybe some day they will see a cure.
Since the diagnosis, the only other significant problem we had are some anxiety issues. Bob has had several panic attacks which he never had before, where it has left him crying uncontrollable. We took this up with Ola on our next visit and she had given us some Xanax to take if and when he has another one. Since Bob is taking more medicine I have bought him a pill box for each day, which helps. The problem was taking the night medicine, he kept forgetting that one. So I set Alexa up to go off every night at 7:30pm and then I ask Bob if he has taken his night time pill and most of the time he had not taken it. Now Alexa goes off every night at 7:30 and every night Bob says, do I need to leave Daisy out and every night I say no, did you take your night time pill? He cannot remember the 7:30 alarm is for his pill. Again this is our new normal.
April 11, 2018 - I am finding when we have a lot of things to do in a day and different from our normal routine, Bob gets nervous and it can lead to a bigger problem, so I have to really watch this situation. Well, it happened on Wednesday. I had to get Bob up at 6:30am, he normally doesn't get up till around 8:30 or 9am because Arnold fireside was going to install our new mantle around 8 or 8:30 and I had to take Dylan to school like normal but had to run to Walmart afterwards and be home by 9 because then Bob had to go get an eye exam for new glasses because he broke his the day before. I was home at 9am, Bob left for his eye exam, everything was good. Bob came home about 10am and I reminded him we need to leave for lunch at 11:10am to meet his brother and sisters. Before we left Bob was trying to hang a picture over the fireplace and was having trouble and getting aggravated, finally I said you need to stop because we have to leave. We left for lunch and I thought we would calm down being with his siblings but it was escalating. Even Jim our brother-in-law could tell Bob was nervous. Bob said if I had one of those pills I would take it now because I am really nervous. I said to Bob I have one in my purse, do you want it and he said "yes", so I gave it to him and after awhile he started calming down. At least we caught it before he really lost it. The rest of the day he was fine. I wouldn't let him drive anymore that day because of taking the Xanax, and that was ok.
Bob has mild Alzheimer disease, which means most people would not even notice anything was wrong with him. He can still drive fine, I watch him like a hawk when he drives and nothing has diminished with his driving. The only people that notice anything wrong are myself and the kids. Some friends that have been around him, like on vacation, have seen it too. We are hoping and praying for a slow progression. Sometimes, even myself, I have times where things are going so well and I think maybe we are all wrong and that he is fine but then something happens and I know we are not wrong.
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