I'm back home for a couple of days, depending on the snow storm that is coming our way. Last week when I came home, I spent about $200 on groceries and household items for my husband from my account. I came home and cooked up 12 dinners and froze them for him. Because of his (my opinion) poor spending habits, I told him I was not going to put any money for groceries into his account. I would buy the groceries and see that he had what he needed. So that is what I did. In his personal spending account, he has enough for gasoline for the month plus about $150/month for other things he may need.
So when I left last Saturday, he had about $100 in his account for the week. On Monday, I checked our online banking to find that he only had $40 left. How had he spent $60 over the weekend? I called him. Well, $33 had been spent on t-shirts he had ordered that said, "Foxy News" with a picture of Sara Palin on them. That was extremely immature to me. Then I noticed that the very day I left, he spent almost $30 at the grocery store. I had just spent $200. What in the world did he need for $30 the very day I left. He told me he purchased hearing aid batteries. Okay, he needed hearing aid batteries. I get that. But $30 worth? He said he bought 2 boxes and each box cost $15. That did not sound right. I of course do the, "Are you sure?" stuff. Of course he was sure. Each box cost $15.
So this weekend when I came home, I went to the same grocery store he went to and picked up a few things. I checked the hearing aid batteries. Were they really $15/box? Of course not. They were $8.99 a box, like I remembered. So I called him at work and asked him about it. He insisted he had only bought hearing aid batteries. I told him they were not $15/box, they were only $8.99/box. I let him know that I was frustrated that I could never get an honest answer out of him. To that he could only reply,"Man, they overcharged me." I was getting frustrated again, "No, they did NOT overcharge you. You just either do not remember what you bought or you are purposely lying to me again." I'm quite sure the cookies sitting on the counter were purchased by him and not the housemates. I don't care if he buys a box of cookies. I do care that I cannot get an honest answer out of him, whether it is about the dog getting on the bed or what he bought at the grocery store.
It is really impossible to know what he can help and what he cannot help. What if the doctors come back with the stupid idea that he is normal? Well, this is not normal, but what is it? I'm feeling very frustrated right now and do not understand what is happening. He will be home soon. Gotta go.
Until later...
Emma James
Friday, January 29, 2010
Tuesday, January 26, 2010
I'm not in the best mood
For some reason since last weekend, even though the 2 days went better, I am not in the most positive mood. That is a bit depressing. Having to face the fact (part I already knew) that while I am the only one really trying to help my husband, he criticizes me behind my back, making it appear nothing is wrong with him, just me. It appears we just have a bad marriage (which we do), and he just has a controlling wife (which he may). But that is not all there is to it. When I found out, by his admission, that last year when I was trying to deal with people at his work about how he was doing, his benefits and all, he was talking negative about me. No wonder they misunderstood what I was trying to do. No wonder, they all of a sudden have a protocal to follow that won't allow them to speak with me about anything, even though I have a durable power of attorney. While to me, he was encouraging me to speak with them, to them he was making me out to be controlling and a pain in the a--. That really upsets me.
Since we have only been married for 7 1/2 years, I am rather the newby on the block. He has worked for this same company for 31 years and is doing mediocre work. He is not excelling in anything anymore. Last night I told him on the phone that if he does not have a degenerative disease but is just being forgettful and obstinate, then I want out. I can tell that if he does have Alzheimer's that he really wants me to stay and be there for him, but if he doesn't, he does not want to give me anything in the case of divorce. Over the past few years, we have made some really bad financial decisions. We both made them, like buying a big house we should not have bought. You see one problem that we had when getting married at 49 was I could not really ask how much money he made. Whenever we wanted something I would say, "I can't afford that. Can you?" It was always "Yes." Well, really too many things went on credit cards or loans. Now we are suffering from it.
Last night I explained to him that I know he has been financially hurt over these past few years like I have. I also explained that while everything I made (since I am self-employed) went to our living expenses. I have saved nothing, while he has a pension and savings automatically taken out of his pay for his retirement fund before he even gets paid. So while he may be in a bad financial situation too, he has continued to accumulate a retirement fund and of course the pension through his work. I raised grandchildren for 7 years and worked part-time, saving nothing. Everything I made went for groceries, clothes, utilities, gasoline, gifts, etc. You know what I mean. Even the inheritance from my dad went into the house, which we may eventually lose.
If my husband truly has a degenerative brain disease and I stay to take care of him, once he is gone I will have a small widow's benefit from his pension and life insurance from him. I am sure whatever he has in his retirement fund will go for his care. If he doesn't have the dreaded disease, I certainly don't want to wait until I am 80 for some small widow's benefit. Perhaps this sounds cold, but not having had a long loving marriage does not motivate me in wanting things to stay as they are for the next 20 - 30 years.
I don't want to be cold and calculating. I just don't know what to do. I am also concerned that our next appointment with the neuropsychologist willl just be inconclusive. I just want to know if my husband's problem is degenerative or if he is just plain forgetful and odd. He wasn't like this when I married him, or was I so consumed with taking care of young children that I just didn't notice.
I'm confused.
Emma
Since we have only been married for 7 1/2 years, I am rather the newby on the block. He has worked for this same company for 31 years and is doing mediocre work. He is not excelling in anything anymore. Last night I told him on the phone that if he does not have a degenerative disease but is just being forgettful and obstinate, then I want out. I can tell that if he does have Alzheimer's that he really wants me to stay and be there for him, but if he doesn't, he does not want to give me anything in the case of divorce. Over the past few years, we have made some really bad financial decisions. We both made them, like buying a big house we should not have bought. You see one problem that we had when getting married at 49 was I could not really ask how much money he made. Whenever we wanted something I would say, "I can't afford that. Can you?" It was always "Yes." Well, really too many things went on credit cards or loans. Now we are suffering from it.
Last night I explained to him that I know he has been financially hurt over these past few years like I have. I also explained that while everything I made (since I am self-employed) went to our living expenses. I have saved nothing, while he has a pension and savings automatically taken out of his pay for his retirement fund before he even gets paid. So while he may be in a bad financial situation too, he has continued to accumulate a retirement fund and of course the pension through his work. I raised grandchildren for 7 years and worked part-time, saving nothing. Everything I made went for groceries, clothes, utilities, gasoline, gifts, etc. You know what I mean. Even the inheritance from my dad went into the house, which we may eventually lose.
If my husband truly has a degenerative brain disease and I stay to take care of him, once he is gone I will have a small widow's benefit from his pension and life insurance from him. I am sure whatever he has in his retirement fund will go for his care. If he doesn't have the dreaded disease, I certainly don't want to wait until I am 80 for some small widow's benefit. Perhaps this sounds cold, but not having had a long loving marriage does not motivate me in wanting things to stay as they are for the next 20 - 30 years.
I don't want to be cold and calculating. I just don't know what to do. I am also concerned that our next appointment with the neuropsychologist willl just be inconclusive. I just want to know if my husband's problem is degenerative or if he is just plain forgetful and odd. He wasn't like this when I married him, or was I so consumed with taking care of young children that I just didn't notice.
I'm confused.
Emma
Monday, January 25, 2010
Thank you to my readers!
I know this blog is relatively new. I wrote a few months last year and then stopped until this month. I so appreciate the emails that get sent directly to me. I also appreciate the comments I have received on the blog. And thank you so much to the woman who signs the blog "Inspired by Emma James." Because this blog is anonymous, we can all share our true concerns and feelings. Thank you to all of you who comment and personally email me.
Emma James
Emma James
When bills go unpaid because they are forgotten
Another thing that happened when I went home last week for 2 days was a phone call I received. Fortunately, I was sitting at my desk when the phone rang. It was our mail-in prescription company. The young woman on the phone was explaining something about how the previous 2 different sets of medications that had been mailed had never been paid.
They were processing another set but needed payment for the previous meds. I admit I was totally confused. It had been a while since I had mailed in prescriptions for myself, so my mind was going a bit blank itself. I asked, "Are these meds for me or my husband?" She stated they were my husband's. He owed $118 and some odd cents. With the order she was processing, we owed about $180. This was just our co-pay that had never been paid.
My husband was sitting at his desk. I told him what the woman was telling me. He looked totally unaware of what I was talking about. I reminded him that when our insurance company had switched to a mail-in type prescription plan, we still had a co-pay just like when we go to the pharmacy. He had paid the co-pay before to the mail-in pharmacy. But apparently had forgotten. He looked at me in surprise. He didn't remember at all that there was a co-pay. I guess he thought we just got them free. I asked the woman if I could pay them off over 2 or 3 months. I really didn't feel that I had $180 in one wack. She stated I could do that. I told her my husband was on all of these meds because of his memory. Obviously, they were not helping. I told her if these bills did not get into my hands, I would never know about them and they would not get paid. The bill comes in the package with the meds. My husband takes out his meds and pays no attention to the bill. He simply forgot that he had to pay for them.
I document all of this type of things for the doctor. It feels so bossy and negative to have to do this. But it is necessary. If I don't do this, even against my husband's will, (he does not want to even know what I write) the doctors would never know what is going on until he is so bad that he is ovbious to everyone. I don't want to wait that long to get a proper diagnosis, and hopefully different medications.
Feb 5th is when we go back to the neuropsychologist to go over his tests results and review what is happening.
I am trying to learn to be more patient and kind through all of this. Sometimes I am better than other times.
Emma James
They were processing another set but needed payment for the previous meds. I admit I was totally confused. It had been a while since I had mailed in prescriptions for myself, so my mind was going a bit blank itself. I asked, "Are these meds for me or my husband?" She stated they were my husband's. He owed $118 and some odd cents. With the order she was processing, we owed about $180. This was just our co-pay that had never been paid.
My husband was sitting at his desk. I told him what the woman was telling me. He looked totally unaware of what I was talking about. I reminded him that when our insurance company had switched to a mail-in type prescription plan, we still had a co-pay just like when we go to the pharmacy. He had paid the co-pay before to the mail-in pharmacy. But apparently had forgotten. He looked at me in surprise. He didn't remember at all that there was a co-pay. I guess he thought we just got them free. I asked the woman if I could pay them off over 2 or 3 months. I really didn't feel that I had $180 in one wack. She stated I could do that. I told her my husband was on all of these meds because of his memory. Obviously, they were not helping. I told her if these bills did not get into my hands, I would never know about them and they would not get paid. The bill comes in the package with the meds. My husband takes out his meds and pays no attention to the bill. He simply forgot that he had to pay for them.
I document all of this type of things for the doctor. It feels so bossy and negative to have to do this. But it is necessary. If I don't do this, even against my husband's will, (he does not want to even know what I write) the doctors would never know what is going on until he is so bad that he is ovbious to everyone. I don't want to wait that long to get a proper diagnosis, and hopefully different medications.
Feb 5th is when we go back to the neuropsychologist to go over his tests results and review what is happening.
I am trying to learn to be more patient and kind through all of this. Sometimes I am better than other times.
Emma James
Sunday, January 24, 2010
I went home for two days to make sure it was still standing - Alzheimer's Yuck!
Since I live most of the week with one of my grown daughter’s and her family (to save my sanity), I go home weekly to check on things. I want to make sure my house hasn't burned down, literally and clean up any dog or cat mess that may have been neglected, plus check to see if my husband is actually taking his meds. Also to see if he has bought something other than dog food and chocolate chips with the grocery allowance that I have given him.
I bought groceries and spent about 6 hours cooking. I made him 12 dinners with about 4 different varieties. I bought freezer containers and froze them. I made sure they were healthy. Each contained a whole grain (whole wheat pasta or brown rice), a complete protein, and a vegetable. He usually won't cook himself any food and lives on peanut butter and tuna fish sandwiches. I want him to eat more variety than that, and I don't want the grocery money spent only on dog food, chocolate chips and occasionally cereal, bread, and milk. So I bought and prepared almost everything he needed, and then gave him $10 for any extra milk or fruit he made need for the week.
My husband has agreed to call me nightly when he takes his meds, so I know that he took them. He usually forgets. If I call him, he will always tell me that he took them. But that doesn't really mean that he took them. So this past Wednesday night, I called him since I had not heard from him in a few days. I asked him if he was still mad at me and was not calling me to keep me informed about his meds on purpose. He insisted that no he was not still angry with me and assured me that he had taken his meds on Wednesday night but just forgot to call me. I asked him, "Are you sure you took them?" He insisted that he did. He stated, “I was in the kitchen talking with Melvin (our housemate) and took them in front of him." The next day, I felt I needed to go home and check on things. I have an uncanny intuitiveness about certain things. I have one daughter who insists I am psychic that is why people can't keep secrets from me. I do not declare myself psychic at all, but I am intuitive when it comes to my family. So on Thursday I went home (only about an hour away). I walked around the house to see if everything was okay. Right now (Perhaps I have mentioned this) we are renting out some of our bedrooms to 4 men who are working for a few months building a local power plant. They are good men and it helps us financially. Plus when I go home I don't have to see the bedrooms that were our granddaughters' when they lived with us. I only cry when I see their rooms. Anyway, I went around our home. In my husband's bathroom, he still had the little space heater on, which is a fire hazard if left unattended. I unplugged it. (Later, I went to the store and bought a safer type of heater for his bathroom.) I went into the living room and found some dried out dog poop that had been stepped on. Our renters do not use the living room. They all have computers and T.V.s in their bedrooms. They have their bedrooms and share 2 bathrooms, laundry room, and the large kitchen. But my husband and I use the living room, my home office, and our bedroom, and I have my own bathroom that the men do not use. This is getting lengthy I know. I am being slow at getting to my point.
When I went into the kitchen I noticed another area where the dog had pooped and peed. My husband had put paper towels to soak up the pee and forgot it. I had to scrub the floor and baseboards to get it clean. I also noticed the disgusting litter box. So I cleaned it. I then noticed that my husband had NOT taken his meds on Wednesday night. The doors had been left unlatched (not just unlocked), and all of the downstairs lights were on.
When he got home, I took him into the kitchen and showed him his weekly medication container. Only Wednesday had any meds in it. I showed him that he had NOT taken his Wednesday night's meds, like he thought. He got defensive and insisted he had taken them. I showed him the container and insisted he had not. He got frustrated with me and insisted that he must have taken Thursday's by mistake. He insisted that I could ask Melvin for he was talking with him Wednesday night when he took them. Melvin got home late and my husband had already gone to bed. I waited up for Melvin. It is not cool to have to drag my renter into something like this. But I was determined to know exactly what had happened. I told Melvin what my husband had said and asked him if that was accurate. He replied, "No, I did not see him take them last night. That was a few nights ago, but not last night." So the next day, I explained to my husband what Melvin had said. I explained to him as nicely as I could, "Your memory is accurate. You do remember taking your meds in front of Melvin. The problem is you do not remember when the memory occurred. it did not happen last night but a few days ago." He was a tiny bit defensive but very sober about it.
I have been in communication with one of his sisters who lives in the U.S. but not in the lower 48 states. So she is far away. I have confided in her about my frustration because I knew she cares about her brother and would not advise me to leave him and only take care of myself. That is usually the advice I get from my family and friends. They hate to see what I am going through and the high stress I am under. So I felt safe talking to her. But apparently my anxiety and stress makes me appear overbearing, yet she "thinks" I am sincere. I did what some might think as the unthinkable. I read my husband’s emails to and from his sister. I was quite annoyed. I am made out to be the boogey man; who is overbearing. My husband is sick of me following him around "bashing" him. His sister mentioned something about she knows that I want what is best. But then made the comment about am I wanting what is just best for me? I was shocked. What is best for me? None of this is best for me. What is best for me was having a healthy marriage and raising my grandchildren. All of that has been unkindly ripped away from me and I am heart broken. My oldest daughter has her children (I raised for 7 years) and will not let me have contact with them. So his sister's email and his email was a bit upsetting.
I calmly sat down with him and told him that I had read his and his sister's emails. I explained to him the frustration I felt. I, as nicely as I could, explained why I am tried of stressing myself out, monitoring everything, putting up with his lies, and his forgetfulness, and then I am being made out to be the Boogie man?
According to the book I am reading "The 36 hour day" everything I am experiencing is common. My frustration is normal. My husband's confusion and blaming me is part of the disease, and the lack of support from other family members is common. Boy, I am a text book example of everything it seems.
After speaking with my husband, he actually seemed to understand my position and realized that I am his advocate not his enemy. He said he would email his sister and explain things better. I said, "Please do it right now, or you will not do it." So he actually did. This is a copy of the email he wrote her. I so appreciated it.
"Marilyn, I think I am confusing the issues. I see things more clearly today, but may not tomorrow. 'Emma' may be "bashing" me when in reality she is only documenting my weirdness and then relating it to me. I have to learn, or realize (remember) that is what is going on. She is my advocate, not my enemy. She is the one that sees what I do daily and nobody else is that tuned in. She is the one that will demand all the tests because I cannot figure out that I need them. This is all very difficult for the both of us. It will not be easy. I will have to come back to this message to remind myself.
It's not her way. Her way was having a healthy marriage and raising the grandchildren and all that has been ripped away from us and she is grieving terribly. It's our way. How is all this going to turnout for all of us? Time will tell. Pray for her. Pray for me."
My husband actually printed out the email and taped in on the wall by his computer desk at home. That way he can read it daily and help remind himself that I am his advocate, not his enemy. That helped the weekend tremendously. On Friday night, we watched a Star Trek movie, had a delicious dessert, and had a fire in the fireplace. This weekend was definitely better that last week.
Emma James
I bought groceries and spent about 6 hours cooking. I made him 12 dinners with about 4 different varieties. I bought freezer containers and froze them. I made sure they were healthy. Each contained a whole grain (whole wheat pasta or brown rice), a complete protein, and a vegetable. He usually won't cook himself any food and lives on peanut butter and tuna fish sandwiches. I want him to eat more variety than that, and I don't want the grocery money spent only on dog food, chocolate chips and occasionally cereal, bread, and milk. So I bought and prepared almost everything he needed, and then gave him $10 for any extra milk or fruit he made need for the week.
My husband has agreed to call me nightly when he takes his meds, so I know that he took them. He usually forgets. If I call him, he will always tell me that he took them. But that doesn't really mean that he took them. So this past Wednesday night, I called him since I had not heard from him in a few days. I asked him if he was still mad at me and was not calling me to keep me informed about his meds on purpose. He insisted that no he was not still angry with me and assured me that he had taken his meds on Wednesday night but just forgot to call me. I asked him, "Are you sure you took them?" He insisted that he did. He stated, “I was in the kitchen talking with Melvin (our housemate) and took them in front of him." The next day, I felt I needed to go home and check on things. I have an uncanny intuitiveness about certain things. I have one daughter who insists I am psychic that is why people can't keep secrets from me. I do not declare myself psychic at all, but I am intuitive when it comes to my family. So on Thursday I went home (only about an hour away). I walked around the house to see if everything was okay. Right now (Perhaps I have mentioned this) we are renting out some of our bedrooms to 4 men who are working for a few months building a local power plant. They are good men and it helps us financially. Plus when I go home I don't have to see the bedrooms that were our granddaughters' when they lived with us. I only cry when I see their rooms. Anyway, I went around our home. In my husband's bathroom, he still had the little space heater on, which is a fire hazard if left unattended. I unplugged it. (Later, I went to the store and bought a safer type of heater for his bathroom.) I went into the living room and found some dried out dog poop that had been stepped on. Our renters do not use the living room. They all have computers and T.V.s in their bedrooms. They have their bedrooms and share 2 bathrooms, laundry room, and the large kitchen. But my husband and I use the living room, my home office, and our bedroom, and I have my own bathroom that the men do not use. This is getting lengthy I know. I am being slow at getting to my point.
When I went into the kitchen I noticed another area where the dog had pooped and peed. My husband had put paper towels to soak up the pee and forgot it. I had to scrub the floor and baseboards to get it clean. I also noticed the disgusting litter box. So I cleaned it. I then noticed that my husband had NOT taken his meds on Wednesday night. The doors had been left unlatched (not just unlocked), and all of the downstairs lights were on.
When he got home, I took him into the kitchen and showed him his weekly medication container. Only Wednesday had any meds in it. I showed him that he had NOT taken his Wednesday night's meds, like he thought. He got defensive and insisted he had taken them. I showed him the container and insisted he had not. He got frustrated with me and insisted that he must have taken Thursday's by mistake. He insisted that I could ask Melvin for he was talking with him Wednesday night when he took them. Melvin got home late and my husband had already gone to bed. I waited up for Melvin. It is not cool to have to drag my renter into something like this. But I was determined to know exactly what had happened. I told Melvin what my husband had said and asked him if that was accurate. He replied, "No, I did not see him take them last night. That was a few nights ago, but not last night." So the next day, I explained to my husband what Melvin had said. I explained to him as nicely as I could, "Your memory is accurate. You do remember taking your meds in front of Melvin. The problem is you do not remember when the memory occurred. it did not happen last night but a few days ago." He was a tiny bit defensive but very sober about it.
I have been in communication with one of his sisters who lives in the U.S. but not in the lower 48 states. So she is far away. I have confided in her about my frustration because I knew she cares about her brother and would not advise me to leave him and only take care of myself. That is usually the advice I get from my family and friends. They hate to see what I am going through and the high stress I am under. So I felt safe talking to her. But apparently my anxiety and stress makes me appear overbearing, yet she "thinks" I am sincere. I did what some might think as the unthinkable. I read my husband’s emails to and from his sister. I was quite annoyed. I am made out to be the boogey man; who is overbearing. My husband is sick of me following him around "bashing" him. His sister mentioned something about she knows that I want what is best. But then made the comment about am I wanting what is just best for me? I was shocked. What is best for me? None of this is best for me. What is best for me was having a healthy marriage and raising my grandchildren. All of that has been unkindly ripped away from me and I am heart broken. My oldest daughter has her children (I raised for 7 years) and will not let me have contact with them. So his sister's email and his email was a bit upsetting.
I calmly sat down with him and told him that I had read his and his sister's emails. I explained to him the frustration I felt. I, as nicely as I could, explained why I am tried of stressing myself out, monitoring everything, putting up with his lies, and his forgetfulness, and then I am being made out to be the Boogie man?
According to the book I am reading "The 36 hour day" everything I am experiencing is common. My frustration is normal. My husband's confusion and blaming me is part of the disease, and the lack of support from other family members is common. Boy, I am a text book example of everything it seems.
After speaking with my husband, he actually seemed to understand my position and realized that I am his advocate not his enemy. He said he would email his sister and explain things better. I said, "Please do it right now, or you will not do it." So he actually did. This is a copy of the email he wrote her. I so appreciated it.
"Marilyn, I think I am confusing the issues. I see things more clearly today, but may not tomorrow. 'Emma' may be "bashing" me when in reality she is only documenting my weirdness and then relating it to me. I have to learn, or realize (remember) that is what is going on. She is my advocate, not my enemy. She is the one that sees what I do daily and nobody else is that tuned in. She is the one that will demand all the tests because I cannot figure out that I need them. This is all very difficult for the both of us. It will not be easy. I will have to come back to this message to remind myself.
It's not her way. Her way was having a healthy marriage and raising the grandchildren and all that has been ripped away from us and she is grieving terribly. It's our way. How is all this going to turnout for all of us? Time will tell. Pray for her. Pray for me."
My husband actually printed out the email and taped in on the wall by his computer desk at home. That way he can read it daily and help remind himself that I am his advocate, not his enemy. That helped the weekend tremendously. On Friday night, we watched a Star Trek movie, had a delicious dessert, and had a fire in the fireplace. This weekend was definitely better that last week.
Emma James
Tuesday, January 19, 2010
Neuropsychiatric testing done - now waiting for results
Last Friday I took my husband to the neuropsychologist for the testing. The testing only consisted of a 45 minute interview and a 1 1/2 hour test. I wonder how that is supposed to give us an accurate diagnosis. I did give the neuropsychologist the 3 pages of notes that I had typed up. I was concerned that I would just look like a pushy controlling wife, but she genuinely wanted everything that I had written.
When we left the office, my husband pleasantly stated, "Well, I think I did really good on the cognitive tests. I've been practicing on memorizing things." I thought, "Oh, crap." One of his old therapists explained to me why it is often difficult to get an accurate diagnosis for someone like my husband. Even if he can go into an hour long appointment and appear normal or even take a memory test and not bomb it, doesn't mean he can function normally in everyday life. It will be three weeks before we go back and talk with the doctor about any results.
My husband and I aren't exactly on speaking terms right now. Last weekend did not go well. After his tests were done, we went to lunch and eventually ended up at his first therapy appointment with this new therapist. I left quite unhappy. For some reason this therapist wanted to do couples counseling and encourage us to bring some romance into our relationship. That is not where I am. I just want to learn what is going on and learn how to deal with this sanely. I don't want to have sex with him; I just want to learn how to be patient and not end up yelling at him, out of total frustration. I really do stink at dealing with this stuff.
I think I have learned my lesson finally. I did the same thing that I did the weekend before, that did not work. What is wrong with me? Why do I continue to think that if I just explain things to him about why his behavior toward my daughters is wrong, he will finally get it? He cannot get it. I cannot tell if he won't or can't. I just get upset and he gets upset. So on Saturday morning when we were doing our horrid merry-go-round thing, we both got upset. He yelled, I through a cup of luke warm coffee on him. (I had never done that before). Boy, was I frustrated. At that, he yelled really loud calling me names and cursing at me. He stormed out of the room and went and called my daughter to tell her what I did. I went and took a bath.
I also do not deal well with him lying to me about stupid things. He lets the dog on the bed when I am gone but insists he's not. I can tell by the way the dog is behaving that she is getting use to sleeping on the bed. Now, this in itself is not awful (I just put an old blanket over the expensive comforter), but it is the ridiculous lying about it that unglues me. So right now, I am just staying away.
I am reading a book titled, "The 36-Hour Day." It is for family members of people with dementia. I really relate to what I am reading. However, I do not believe that if we are facing what I fear we are facing, that I will really be able to do it. The problem is there is no one else to do it. I do not believe his sons who live clear across the country would step in and take over if needed. Nor do I believe his sisters who live even further away are in a position to take over if he needs it.
Of course, it could come out that he doesn't really have a dementing degenerative disease after all. Perhaps he has another mental disorder. If that is the case, perhaps he can take care of himself if he gets a small apartment. Time will tell all, won't it?
All I know right now is that we need an accurate diagnosis. He needs the right medication, and I need to learn how to emotionally disconnect while I still manage his care, both legal and medical care. I wonder if he will go to his next appointment on Friday with his new therapist. I am not going to remind him about it. Maybe he will remember, maybe he won't. We'll see.
Until later...
Emma
When we left the office, my husband pleasantly stated, "Well, I think I did really good on the cognitive tests. I've been practicing on memorizing things." I thought, "Oh, crap." One of his old therapists explained to me why it is often difficult to get an accurate diagnosis for someone like my husband. Even if he can go into an hour long appointment and appear normal or even take a memory test and not bomb it, doesn't mean he can function normally in everyday life. It will be three weeks before we go back and talk with the doctor about any results.
My husband and I aren't exactly on speaking terms right now. Last weekend did not go well. After his tests were done, we went to lunch and eventually ended up at his first therapy appointment with this new therapist. I left quite unhappy. For some reason this therapist wanted to do couples counseling and encourage us to bring some romance into our relationship. That is not where I am. I just want to learn what is going on and learn how to deal with this sanely. I don't want to have sex with him; I just want to learn how to be patient and not end up yelling at him, out of total frustration. I really do stink at dealing with this stuff.
I think I have learned my lesson finally. I did the same thing that I did the weekend before, that did not work. What is wrong with me? Why do I continue to think that if I just explain things to him about why his behavior toward my daughters is wrong, he will finally get it? He cannot get it. I cannot tell if he won't or can't. I just get upset and he gets upset. So on Saturday morning when we were doing our horrid merry-go-round thing, we both got upset. He yelled, I through a cup of luke warm coffee on him. (I had never done that before). Boy, was I frustrated. At that, he yelled really loud calling me names and cursing at me. He stormed out of the room and went and called my daughter to tell her what I did. I went and took a bath.
I also do not deal well with him lying to me about stupid things. He lets the dog on the bed when I am gone but insists he's not. I can tell by the way the dog is behaving that she is getting use to sleeping on the bed. Now, this in itself is not awful (I just put an old blanket over the expensive comforter), but it is the ridiculous lying about it that unglues me. So right now, I am just staying away.
I am reading a book titled, "The 36-Hour Day." It is for family members of people with dementia. I really relate to what I am reading. However, I do not believe that if we are facing what I fear we are facing, that I will really be able to do it. The problem is there is no one else to do it. I do not believe his sons who live clear across the country would step in and take over if needed. Nor do I believe his sisters who live even further away are in a position to take over if he needs it.
Of course, it could come out that he doesn't really have a dementing degenerative disease after all. Perhaps he has another mental disorder. If that is the case, perhaps he can take care of himself if he gets a small apartment. Time will tell all, won't it?
All I know right now is that we need an accurate diagnosis. He needs the right medication, and I need to learn how to emotionally disconnect while I still manage his care, both legal and medical care. I wonder if he will go to his next appointment on Friday with his new therapist. I am not going to remind him about it. Maybe he will remember, maybe he won't. We'll see.
Until later...
Emma
Monday, January 11, 2010
Neuropsych testing for Dementia/Alzheimers finally arranged.
Finally, the doctor's office called and told me when to take my husband back for his neuropsych testing. It is actually this Friday. The test takes a few hours to finish. He will be rather tired after it is done. We then have his first appointment later that same day with a new therapist, who feels competent to work with us with this dementia problem. I think I should take my husband out to dinner at the end of the day and be extra nice to him.
I came home for the weekend to check on him. The first evening was awful. I almost went back to where I have been living. He went to bed early and upset but agreed to finish our conversation the next day.
The evening started with me trying for the umpteenth time to explain to him why my grown daughters did not want him trying to kiss them on the mouth. They simply do not like it. They try to be very kind to him and just turn and give him their cheek. But they are uncomfortable, so they tell me about it. I try to talk to him about it. He first gets upset and denies that he tries to kiss them on the mouth. Then when I finally convince him that he really is doing this, he then gets upset that it shouldn't bother them. What's wrong with a little peck on the mouth? Well, maybe nothing for some people. But since my daughters do not like their step-dad kissing them on the mouth, then he simply shouldn't do it. Then he gets angry that they don't tell him themselves. I try to explain that they are uncomfortable and don't want to hurt his feelings. Plus, since I have such terrible luck explaining it to him and he gets upset, why would they want to tell him? It really is my job. He is my husband, and he is not their father.
So we go round and round and get nowhere. We are simply on an unpleasant merry-go-round. When he starts to get upset with my daughters, then I really start to come unglued. We are talking about my sweet wonderful daughters who have been wonderful to him and supportive of both of us. We are not talking about my two daughters who have been rude and obnoxious. So he needs to back off of the sweet ones if he wants them to be around at all. Of course when he is upset, he yells at me, "Well, I just won't be around your kids at all. I'll NEVER get near them again." I then tell him that we have had this same conversation many times and he always ends up saying this same thing and then never remembers. He of course denies it.
What is really strange is that my husband doesn't have a clue why I won't let him give me kisses on the mouth either, at least wet mushy ones. You need to understand; my husband lost interest in me romantically years ago. He made it very clear that he did not find me attractive. He was not incapable, just NOT interested. There has been no physical affection between us for years by his choice, not mine. I gave up hoping for a normal relationship about 5 years ago. I don't cry about it anymore. Our relationship went from a husband/wife relationship to a sister/brother relationship until it became more like a mother/son relationship. What normal woman wants to make out with her son? Not me! Wet kisses are ancient history for us. So out of the blue on New Year's Eve he lunges at me planting wet kisses on my mouth. I was unprepared and turned and gave him my cheek. At that he said, "I want some lippy lippy." I simply replied, "Well, I don't want any lippy lippy." I really didn't want to hurt his feelings, but lippy lippy just isn't going to happen. When he complained the other night about me not even letting him kiss me, I tried to explain. "For years now you have been unkind about any affection toward me. You have stated clearly that you are not attracted to me. So I adjusted. I am here because I care about you and you need me to take care of you, and I need you because I am financially more stable with you." What a yucky way for a marriage to be. But that's the way it is.
You must understand that we had been married only 4 months when we got 3 of my grandchildren to raise. We raised them for 7 years. They went back to their mother when my daughter (their mother) made horrible false accusations about us. The children are no longer here. I cried for months after they left. They had become my life. The last 2 - 3 years they were here, my husband's behavior rivaled the children's behavior. That was hard. So now for some reason, he wants to start kissing. Well, I don't. Plus I was upset that he even thought he had the right to be angry with me for not wanting to make out with him when he was the one that made it very clear in the first place, that he was not attracted to me. Something to add, I am an attractive woman. I am tall, slender, dark hair (when I keep it colored), healthy, pretty eyes, healthy skin, and a friendly nature (at least I used to be friendly before all of this started). I unfortunately had to make it painfully clear that while yes I am his wife, I will be here for him as a friend, partner, eventually his caregiver but not his lover. Even thinking about being romantic with him feels incestuous and creepy. Putting all of this aside, I admit I miss romance. I miss being held and touched by a man. I would love to be in love again and make passionate love with a doting husband. But I don't think that is in the cards for me, and I'm definitely not getting any younger.
The next issue we argued about was probably unnecessary on my part. Perhaps I should have kept my mouth shut. But I keep thinking if I point things out to him that he will be alarmed at his own forgetfulness. That he will tell the doctor that he is worried, not just me telling her. It doesn't seem to work that way though. So what happened next?
Well, it is very cold outside. When it is this cold and we do not put a heater under each side of this big old house, we wake up to frozen pipes, no water. The morning I was coming home, he called and told me the pipes on one side of the house had frozen. He had bought another little heater to put under the house. We only had one under there because a squirrel or some critter and chewed through the cord of one of the old ones.
When I got home, the water was still not working in half of the house. So I went researching. I found one heater working under one wing of the house. I then went down into our old yucky cellar (the kind that has an outside entrance with one of those old fashioned lift up doors) to check the other heater. Well I found the heater. It was not working. It was turned on. The cord was plugged into an extension cord. The problem was that the extension cord was not plugged into the outlet. The outlet was high on a wall across this small old cellar. So the extension cord ran along the floor, then was draped up and around a pipe a few times and then just hung. It wasn't plugged in. I plugged it in and the heater ran just fine.
When I told my husband that he had forgotten to plug the cord in, he would not believe me. He had plugged it in. I insisted he had not. There we were again on our unpleasant merry-go-round. He then insisted someone must have unplugged it. This was really getting frustrating. The cellar door had frozen shut and I had difficulty even prying it open. Who would have gone down in that damp ugly cellar and unplugged the heater? I asked him half heartedly if he wanted me to ask our renters if anyone of them had done that. He actually said “Yes.” So I asked one of them. Of course he had not gone down there. I asked my husband if he wanted me to ask the other men when they got home. He finally said, "No, a squirrel probably did it."
I believe my husband’s distinct memory of wrapping the extension cord around the pipe and plugging it in is real. I just think the memory is from last year not 2 days ago. He thinks I'm ridiculous, and I think he simply doesn't remember.
Tonight he did eventually show the scared side of himself. He was talking about a family reunion coming up next summer clear across the country. He wants to go to it but doesn't want to go alone. My husband spent years traveling around the world in his job. I mean literally; he flew around the world many times. Now he is afraid to go by himself to a family reunion? He was finally able to be honest with me about his concerns, so I told him that if we could manage it financially, I would definitely go with him, even though that was not our original plan.
He also admitted that this year-long class he is taking for work has him concerned. I asked him how he was really doing. I have read that people with Alzheimer's or dementia have a hard time learning anything knew. So I have been puzzled at how he could be doing well on tests. Then he explained.
At the beginning of the class months ago, they gave out the final exam. All tests are open book and can be done whenever one feels like taking them. At the end of the year-long class, everyone gets a certificate of completion. The only hitch is, the certificate only allows the person to sit for the National Certification Exam. My husband does not think he could pass the exam. I doubt he will even attempt to take it. But I am still really glad that he is even taking the class. It is good for him, even if he isn't really retaining any of the information. A year from now will be very telling.
What a weekend and what a long post.
Emma James
I came home for the weekend to check on him. The first evening was awful. I almost went back to where I have been living. He went to bed early and upset but agreed to finish our conversation the next day.
The evening started with me trying for the umpteenth time to explain to him why my grown daughters did not want him trying to kiss them on the mouth. They simply do not like it. They try to be very kind to him and just turn and give him their cheek. But they are uncomfortable, so they tell me about it. I try to talk to him about it. He first gets upset and denies that he tries to kiss them on the mouth. Then when I finally convince him that he really is doing this, he then gets upset that it shouldn't bother them. What's wrong with a little peck on the mouth? Well, maybe nothing for some people. But since my daughters do not like their step-dad kissing them on the mouth, then he simply shouldn't do it. Then he gets angry that they don't tell him themselves. I try to explain that they are uncomfortable and don't want to hurt his feelings. Plus, since I have such terrible luck explaining it to him and he gets upset, why would they want to tell him? It really is my job. He is my husband, and he is not their father.
So we go round and round and get nowhere. We are simply on an unpleasant merry-go-round. When he starts to get upset with my daughters, then I really start to come unglued. We are talking about my sweet wonderful daughters who have been wonderful to him and supportive of both of us. We are not talking about my two daughters who have been rude and obnoxious. So he needs to back off of the sweet ones if he wants them to be around at all. Of course when he is upset, he yells at me, "Well, I just won't be around your kids at all. I'll NEVER get near them again." I then tell him that we have had this same conversation many times and he always ends up saying this same thing and then never remembers. He of course denies it.
What is really strange is that my husband doesn't have a clue why I won't let him give me kisses on the mouth either, at least wet mushy ones. You need to understand; my husband lost interest in me romantically years ago. He made it very clear that he did not find me attractive. He was not incapable, just NOT interested. There has been no physical affection between us for years by his choice, not mine. I gave up hoping for a normal relationship about 5 years ago. I don't cry about it anymore. Our relationship went from a husband/wife relationship to a sister/brother relationship until it became more like a mother/son relationship. What normal woman wants to make out with her son? Not me! Wet kisses are ancient history for us. So out of the blue on New Year's Eve he lunges at me planting wet kisses on my mouth. I was unprepared and turned and gave him my cheek. At that he said, "I want some lippy lippy." I simply replied, "Well, I don't want any lippy lippy." I really didn't want to hurt his feelings, but lippy lippy just isn't going to happen. When he complained the other night about me not even letting him kiss me, I tried to explain. "For years now you have been unkind about any affection toward me. You have stated clearly that you are not attracted to me. So I adjusted. I am here because I care about you and you need me to take care of you, and I need you because I am financially more stable with you." What a yucky way for a marriage to be. But that's the way it is.
You must understand that we had been married only 4 months when we got 3 of my grandchildren to raise. We raised them for 7 years. They went back to their mother when my daughter (their mother) made horrible false accusations about us. The children are no longer here. I cried for months after they left. They had become my life. The last 2 - 3 years they were here, my husband's behavior rivaled the children's behavior. That was hard. So now for some reason, he wants to start kissing. Well, I don't. Plus I was upset that he even thought he had the right to be angry with me for not wanting to make out with him when he was the one that made it very clear in the first place, that he was not attracted to me. Something to add, I am an attractive woman. I am tall, slender, dark hair (when I keep it colored), healthy, pretty eyes, healthy skin, and a friendly nature (at least I used to be friendly before all of this started). I unfortunately had to make it painfully clear that while yes I am his wife, I will be here for him as a friend, partner, eventually his caregiver but not his lover. Even thinking about being romantic with him feels incestuous and creepy. Putting all of this aside, I admit I miss romance. I miss being held and touched by a man. I would love to be in love again and make passionate love with a doting husband. But I don't think that is in the cards for me, and I'm definitely not getting any younger.
The next issue we argued about was probably unnecessary on my part. Perhaps I should have kept my mouth shut. But I keep thinking if I point things out to him that he will be alarmed at his own forgetfulness. That he will tell the doctor that he is worried, not just me telling her. It doesn't seem to work that way though. So what happened next?
Well, it is very cold outside. When it is this cold and we do not put a heater under each side of this big old house, we wake up to frozen pipes, no water. The morning I was coming home, he called and told me the pipes on one side of the house had frozen. He had bought another little heater to put under the house. We only had one under there because a squirrel or some critter and chewed through the cord of one of the old ones.
When I got home, the water was still not working in half of the house. So I went researching. I found one heater working under one wing of the house. I then went down into our old yucky cellar (the kind that has an outside entrance with one of those old fashioned lift up doors) to check the other heater. Well I found the heater. It was not working. It was turned on. The cord was plugged into an extension cord. The problem was that the extension cord was not plugged into the outlet. The outlet was high on a wall across this small old cellar. So the extension cord ran along the floor, then was draped up and around a pipe a few times and then just hung. It wasn't plugged in. I plugged it in and the heater ran just fine.
When I told my husband that he had forgotten to plug the cord in, he would not believe me. He had plugged it in. I insisted he had not. There we were again on our unpleasant merry-go-round. He then insisted someone must have unplugged it. This was really getting frustrating. The cellar door had frozen shut and I had difficulty even prying it open. Who would have gone down in that damp ugly cellar and unplugged the heater? I asked him half heartedly if he wanted me to ask our renters if anyone of them had done that. He actually said “Yes.” So I asked one of them. Of course he had not gone down there. I asked my husband if he wanted me to ask the other men when they got home. He finally said, "No, a squirrel probably did it."
I believe my husband’s distinct memory of wrapping the extension cord around the pipe and plugging it in is real. I just think the memory is from last year not 2 days ago. He thinks I'm ridiculous, and I think he simply doesn't remember.
Tonight he did eventually show the scared side of himself. He was talking about a family reunion coming up next summer clear across the country. He wants to go to it but doesn't want to go alone. My husband spent years traveling around the world in his job. I mean literally; he flew around the world many times. Now he is afraid to go by himself to a family reunion? He was finally able to be honest with me about his concerns, so I told him that if we could manage it financially, I would definitely go with him, even though that was not our original plan.
He also admitted that this year-long class he is taking for work has him concerned. I asked him how he was really doing. I have read that people with Alzheimer's or dementia have a hard time learning anything knew. So I have been puzzled at how he could be doing well on tests. Then he explained.
At the beginning of the class months ago, they gave out the final exam. All tests are open book and can be done whenever one feels like taking them. At the end of the year-long class, everyone gets a certificate of completion. The only hitch is, the certificate only allows the person to sit for the National Certification Exam. My husband does not think he could pass the exam. I doubt he will even attempt to take it. But I am still really glad that he is even taking the class. It is good for him, even if he isn't really retaining any of the information. A year from now will be very telling.
What a weekend and what a long post.
Emma James
Wednesday, January 6, 2010
Finding the right doctors
What a frustrating experience just to find the right kind of doctors. I am still waiting for the appointment for my husband to have the neuropsych tests done over again. I should at least know tomorrow when the appointment will be. I am also trying to find a geriatric psychiatrist who specializes in dementia and also takes our insurance. I finally got the name of someone good. Hopefully tomorrow I will be able to contact her office and at least get an appointment for him.
I am also trying to get him back into therapy with the only therapist that he liked. He went to her a few times and then she changed jobs and works with the VA now. Trying to get him to see her through the VA is ridiculously difficult. He is registered with the VA, but yet I am told that he does not qualify because he makes too much money. Then someone else tells me that doesn't matter since they will bill our insurance, and he will just pay his copay. So yesterday I finally found a direct number for the therapist. I called her and left a message. She called me back tonight and left me a message with her cell phone number. (The phone tag stuff again.) So I called her cell phone. She said she had talked with my husband months ago and he had said he was doing what he needed to do with the VA to be able to see her. She never heard from him again. I explained to her that if he was actually going to see her, it would have to be worked out by me and her. She is certain that he can see her and it be billed through our insurance. She is suppose to check on the process tomorrow and call me back. This is unnecessarily complicated, isn't it?
Sometimes I still think I am just making things up, and that it really isn't as bad as I am making it out to be. I want to believe that I am just exaggerating, but all I have to do is read my own notes, and I know that I am not exaggerating anything. It is very confusing to me, because sometimes he seems so brilliant. He can talk so intelligently and other times it is obvious that something is wrong with him. Sometimes I think it is my fault, that I am causing all of his problems. I feel like I am just being a bad mother to him. But the fact that I feel like his mother at all shows there are big problems.
Once I really understand what is happening with him, I think I will have an easier time being patient. Now, I don't want to sound like I am always awful, because I am not. I am only awful when he is doing something that I think is stupid or he is telling me he did what I asked when he didn't. Then I try to reason with him and that falls flat. Then I get upset and he shuts down. But the thought of having to really accept that he will never act like a normal man consistantly is really scary.
The nightmares that I often have do not help the situation. The memory from last night's dream is mostly gone, except for the vague memory of a man trying to manipulate and destroy something about my life. I am not even going to try and remember the rest of the dream, for it was not pleasant.
Until next time...
Emma James
I am also trying to get him back into therapy with the only therapist that he liked. He went to her a few times and then she changed jobs and works with the VA now. Trying to get him to see her through the VA is ridiculously difficult. He is registered with the VA, but yet I am told that he does not qualify because he makes too much money. Then someone else tells me that doesn't matter since they will bill our insurance, and he will just pay his copay. So yesterday I finally found a direct number for the therapist. I called her and left a message. She called me back tonight and left me a message with her cell phone number. (The phone tag stuff again.) So I called her cell phone. She said she had talked with my husband months ago and he had said he was doing what he needed to do with the VA to be able to see her. She never heard from him again. I explained to her that if he was actually going to see her, it would have to be worked out by me and her. She is certain that he can see her and it be billed through our insurance. She is suppose to check on the process tomorrow and call me back. This is unnecessarily complicated, isn't it?
Sometimes I still think I am just making things up, and that it really isn't as bad as I am making it out to be. I want to believe that I am just exaggerating, but all I have to do is read my own notes, and I know that I am not exaggerating anything. It is very confusing to me, because sometimes he seems so brilliant. He can talk so intelligently and other times it is obvious that something is wrong with him. Sometimes I think it is my fault, that I am causing all of his problems. I feel like I am just being a bad mother to him. But the fact that I feel like his mother at all shows there are big problems.
Once I really understand what is happening with him, I think I will have an easier time being patient. Now, I don't want to sound like I am always awful, because I am not. I am only awful when he is doing something that I think is stupid or he is telling me he did what I asked when he didn't. Then I try to reason with him and that falls flat. Then I get upset and he shuts down. But the thought of having to really accept that he will never act like a normal man consistantly is really scary.
The nightmares that I often have do not help the situation. The memory from last night's dream is mostly gone, except for the vague memory of a man trying to manipulate and destroy something about my life. I am not even going to try and remember the rest of the dream, for it was not pleasant.
Until next time...
Emma James
Taking Care of the Caregiver
I hear so much about how caregivers of dementia patients need to take care of themselves. Well, we are not actually to the point that I have to actually take care of my husband. I do have to make all of the financial decisions and remind him to take his medications and things like that, but he is still capable of taking care of himself.
But I still have neglected myself. So yes, I started the Scottish Country dance class that I mentioned a couple of days ago. I came home tonight really sore. I didn't know that Scottish dancing was so difficult and tricky. But I had a lot of fun. Scottish country dancing seems to be a combination of contra dancing and ballet. Trying to copy everyone else's dance steps while also trying to learn the moves will take some real practice and effort.
I sort of feel guilty going by myself and not inviting my husband. But I don't think he is coordinated enough to learn the dance, plus I really need a break from the stress I feel with him. So I go by myself. There were plenty of experienced lady dancers who had to play the man's part. It did get a bit confusing trying to learn the dance when you couldn't tell who was dancing the man's part or the woman's part.
Eight years ago before my husband and I were married, we took English Country dance classes together for a few months. He insisted he enjoyed it. However, I think he had a hard time even then learning the steps, and he actually looked terribly bored.
When a person has early dementia or Alzheimer's, their thought processing is slower. They get confused easier. So I really do not think he would enjoy himself, and I really need to do something that I enjoy and don't have to be concerned about him. So this is for me. I will dance.
Emma James
But I still have neglected myself. So yes, I started the Scottish Country dance class that I mentioned a couple of days ago. I came home tonight really sore. I didn't know that Scottish dancing was so difficult and tricky. But I had a lot of fun. Scottish country dancing seems to be a combination of contra dancing and ballet. Trying to copy everyone else's dance steps while also trying to learn the moves will take some real practice and effort.
I sort of feel guilty going by myself and not inviting my husband. But I don't think he is coordinated enough to learn the dance, plus I really need a break from the stress I feel with him. So I go by myself. There were plenty of experienced lady dancers who had to play the man's part. It did get a bit confusing trying to learn the dance when you couldn't tell who was dancing the man's part or the woman's part.
Eight years ago before my husband and I were married, we took English Country dance classes together for a few months. He insisted he enjoyed it. However, I think he had a hard time even then learning the steps, and he actually looked terribly bored.
When a person has early dementia or Alzheimer's, their thought processing is slower. They get confused easier. So I really do not think he would enjoy himself, and I really need to do something that I enjoy and don't have to be concerned about him. So this is for me. I will dance.
Emma James
Tuesday, January 5, 2010
Psuedo-Dementia and Depression?
Today I went to my doctor to discuss everything that is going on in my life. He refilled my Xanax, and we talked about my husband's situation. Now my doctor is not my husband's doctor, but he does specialize in geriatric psychiatry and dementia. He was puzzled with my husband's diagnosis. He told me that when a person has dementia caused by depression, the depression is usually severe. Which does not at all seem like my husband. He also stated that studies indicate that when a diagnosis like this is given and the depression improves from medication, often within 2 years, the dementia becomes more evident. It was there all along, the depression just highlighted it earlier.
I am waiting to find out when my husband's appointment will be to redo all of the neuropsych testing that was done 8 months ago. His doctor's office called me with the name and phone number of a clinic for a neuropsychiatrist. I called and left a message; they called back and left me a message. You know how that goes. Well anyway, they only had a neuropsychologist there. That didn't make a lot of sense, since my husband's doctor is the one arranging for the neuropsych tests to be redone at the original neuropsycholist's office through the University.
So now I am confused. I will call his primary care doctor (a gerontologist) tomorrow to figure this all out. To complicate things even more, I have to make sure whoever I take him to is in our insurance network, what a confusing and complicated situation.
Emma James
I am waiting to find out when my husband's appointment will be to redo all of the neuropsych testing that was done 8 months ago. His doctor's office called me with the name and phone number of a clinic for a neuropsychiatrist. I called and left a message; they called back and left me a message. You know how that goes. Well anyway, they only had a neuropsychologist there. That didn't make a lot of sense, since my husband's doctor is the one arranging for the neuropsych tests to be redone at the original neuropsycholist's office through the University.
So now I am confused. I will call his primary care doctor (a gerontologist) tomorrow to figure this all out. To complicate things even more, I have to make sure whoever I take him to is in our insurance network, what a confusing and complicated situation.
Emma James
Taking Care of Myself
I hear this so much, "You've got to take care of yourself." "HOW?" I ask. Well since I already know that 2010 will bring many challenges to me, I need to better prepare myself. Last year was very difficult. The grandchildren we were raising went back to their mother because of all the problems we were having. I was heart broken. I still have nightmares and worry about the children as well. So for most of 2009, I cried about the children and worried and was frustrated with my husband.
I did not take care of myself. By November 2009, I had lost so much weight, I was technically underweight. My skin looked grey and I only ate if someone fixed the food and put it in front of me. Things were not well for me. So in November I came to live with one of my daughters for a while. She is married and has two young children. It is amazing the improvement I have made in just 6 weeks. I have put on 10 pounds, and my color is back.
I do take anti-anxiety meds but am working on some positive things to do. I do continue to function at my work (I am self-employed). I am joining a dance class to learn Scottish Country Dancing. I am excited about that. I love to dance and actually have the energy finally to even want to try. I am also looking for a support group to join for people who's spouses have dementia. Plus, I plan on writing what is going on. Whether it is positive or negative, I am going to keep a record.
Let's see how 2010 goes for me, hopefully better than 2009.
Emma James
Husband with demenita, probably Early Onset Alzheimer's
I did not take care of myself. By November 2009, I had lost so much weight, I was technically underweight. My skin looked grey and I only ate if someone fixed the food and put it in front of me. Things were not well for me. So in November I came to live with one of my daughters for a while. She is married and has two young children. It is amazing the improvement I have made in just 6 weeks. I have put on 10 pounds, and my color is back.
I do take anti-anxiety meds but am working on some positive things to do. I do continue to function at my work (I am self-employed). I am joining a dance class to learn Scottish Country Dancing. I am excited about that. I love to dance and actually have the energy finally to even want to try. I am also looking for a support group to join for people who's spouses have dementia. Plus, I plan on writing what is going on. Whether it is positive or negative, I am going to keep a record.
Let's see how 2010 goes for me, hopefully better than 2009.
Emma James
Husband with demenita, probably Early Onset Alzheimer's
Monday, January 4, 2010
Back to the beginning: Testing for Alzheimer's
As you can tell by the date, it has been several months since I have written. So this post might be lengthy.
When the doctors told me that my husband was actually being diagnosed with pseudo-dementia caused by depression and was treatable, I was relieved. He was taken off the Aricept and put on an anti-depressant. I expected him to get better. I wanted to believe the doctors. However, things are not better.
During the summer when a friend of his was visiting from his home state, she went to lunch with us. I admit I was an emotional wreck. Why wasn't he better yet? When we went to lunch, he ordered salmon. After he finished eating, he matter of factly stated, "I'm ready for my salmon." I told him he just ate it. He replied, "No, that was duck salad." His friend was a bit taken back and assured him that he had eaten salmon. He only responded with, "Oh, I thought I had eaten the duck salad." Back to the doctor we went. He upped his anti-depressant.
Because things have been so stressful on me, and I really stink at dealing with this, I am currently staying with one of my grown daughters. I go home weekly to check on my husband. He is still working, so he can obviously take care of himself well enough. I do have him call me nightly to let me know he took his meds. Sometimes he forgets.
We rented out three of our upstairs bedrooms to some nice men to help with finances. I like knowing my husband is not alone. Plus it helps me when I learn that one of the renters told my husband NOT to let his dogs out of the kennel because he is training a Great Dane puppy. What happened? My husband forgot and let the dogs out. So now our renter has locked the kennel. He's a great guy and understanding. Plus, I think he likes living in a big old house with plenty of property so he can put up a kennel for his dogs.
On Thanksgiving, we invited my husband to come for the day. I am only an hour from home, so I'm not very far. I invited him to stay the night with me and reminded him to bring his sleep apnea machine and meds and all. When he got here, what had he brought for a sleep over? Only his toothbrush. I was worried. So back to the doctor we went. The doctor upped his anti-depressants some more.
Not to mention the frustration I am experiencing of trying to keep to a budget when my husband transfers money from our main account into his personal spending account without telling me. Then I am short when it comes time to pay the main monthly expenses. I become highly irritated because I am thinking I am dealing with someone I can reason with and one who will understand and remember to stick with our plan.
When one of our renters moved out because he wanted someplace he could smoke and party, I asked my husband to put our ad back in Craigslist. I had listed it the last time but really wanted him to be responsible for it. Well he did. I only had to make a few corrections, but nothing too major. The ad stated that we had a furnished room available for a mature male. Within a short time, my husband received an email from a (supposed) 28 year old female nurse. He called me and told me about the email. I was reluctant but basically said, "Talk with her on the phone and we'll discuss it." Within a few days, I received an email from my husband telling me the room was rented and he had taken the ad down. I immediately called him and told him "No way." Had he even talked with this woman? "No." He didn't have a last name or phone number for her. He sent me the string of emails from their communicaiton. I about choked when I read them. It was very obvious that if this was really a woman then she was severely mentally ill or it was a scam.
I tried to explain to my husband why we could not rent to this person. He could not understand it. This (supposed) woman, who could barely write English, stated she was under the care of her uncle. She offered to go to a coffee shop or a bar or do anything spontaneous with my husband if he wanted. He didn't even remember that part of the email. So we just argued over the phone and he thought I was just being judgmental of this poor woman. I immediately headed home. When I got home, I read the entire string of emails. I was even more shocked with my husband's childish respones and agreement to accept her cashier's check and deposit it immediately into our account while he waited for her car and belongings to be "shipped over" from just a few states away. (The cashier's check was actually being sent by Fed Ex, which we could track online.) I was actually embarrassed by his email to her about how wonderful she sounded and how she would fit so well into our little family.
I told him if she were a real person, she was absolutely NOT moving in with us. But I was quite sure it was a total scam and was horrified to read that he had actually sent this unknown person our complete names and address with complete instructions on how to find us. At that point I took over. I emailed the person told "it"the room was not available and that if the cashier's check arrived, I would return it. This person quickly and rudely responded with he would only accept the money back by Western Union or he would believe we were scamming him. My husband finally believed me. I wrote this person back and basically said, "If the envelope actually gets to us, I am sure the cops or a federal agency would love to get your cashiers check." We put a note on our door for Fed Ex stating that would we sign for NO packages. Fortunately, that was the end of that. The room is rented to a man who works with the other men. I am pleased with the temporary arrangement.
Over the past few months we have continued to have problems with my husband forgetting things but telling me that he did whatever I asked. I of course find out the truth and then can't figure out if he really thinks he did what I asked, or if he is just fibbing to me to get me off his back. Boy, this gets frustrating.
So back to the doctor we went again. This time I decided I had to deal with things differently. Usually I go and am obviously a basket case, crying and all. This time, I got dressed up like a professional geratric care manager and tried to pretend he was my client and not my husband. I think I did a bit better.
The doctor is ordering the neuro-psych tests to be done over again. It has been about 8 months since they were done last time. He will also be referred to a neuro psychiatrist or geriatric psychiatrist. I realize that I am really his only advocate at this point. So for my own sanity, I either get a divorce and just totally leave, or I take charge and learn to be persistant with the doctors in a sane and less emotional way.
I have consulted with a professional geriatric care manager who's specialty is Alzheimer's, and she has assured me that it is very normal for the spouse to have a very difficult time when dealing with issues such as these.
I believe that when he gets diagnosed properly and I get the proper help and advice for myself, perhaps I will learn how to better manage things and not feel like I stink so bad at it.
I plan to write often describing this journey.
As I acquire readers to this blog, I hope to hear from you often as well.
Emma James
Husband with Early Alzheimer's
When the doctors told me that my husband was actually being diagnosed with pseudo-dementia caused by depression and was treatable, I was relieved. He was taken off the Aricept and put on an anti-depressant. I expected him to get better. I wanted to believe the doctors. However, things are not better.
During the summer when a friend of his was visiting from his home state, she went to lunch with us. I admit I was an emotional wreck. Why wasn't he better yet? When we went to lunch, he ordered salmon. After he finished eating, he matter of factly stated, "I'm ready for my salmon." I told him he just ate it. He replied, "No, that was duck salad." His friend was a bit taken back and assured him that he had eaten salmon. He only responded with, "Oh, I thought I had eaten the duck salad." Back to the doctor we went. He upped his anti-depressant.
Because things have been so stressful on me, and I really stink at dealing with this, I am currently staying with one of my grown daughters. I go home weekly to check on my husband. He is still working, so he can obviously take care of himself well enough. I do have him call me nightly to let me know he took his meds. Sometimes he forgets.
We rented out three of our upstairs bedrooms to some nice men to help with finances. I like knowing my husband is not alone. Plus it helps me when I learn that one of the renters told my husband NOT to let his dogs out of the kennel because he is training a Great Dane puppy. What happened? My husband forgot and let the dogs out. So now our renter has locked the kennel. He's a great guy and understanding. Plus, I think he likes living in a big old house with plenty of property so he can put up a kennel for his dogs.
On Thanksgiving, we invited my husband to come for the day. I am only an hour from home, so I'm not very far. I invited him to stay the night with me and reminded him to bring his sleep apnea machine and meds and all. When he got here, what had he brought for a sleep over? Only his toothbrush. I was worried. So back to the doctor we went. The doctor upped his anti-depressants some more.
Not to mention the frustration I am experiencing of trying to keep to a budget when my husband transfers money from our main account into his personal spending account without telling me. Then I am short when it comes time to pay the main monthly expenses. I become highly irritated because I am thinking I am dealing with someone I can reason with and one who will understand and remember to stick with our plan.
When one of our renters moved out because he wanted someplace he could smoke and party, I asked my husband to put our ad back in Craigslist. I had listed it the last time but really wanted him to be responsible for it. Well he did. I only had to make a few corrections, but nothing too major. The ad stated that we had a furnished room available for a mature male. Within a short time, my husband received an email from a (supposed) 28 year old female nurse. He called me and told me about the email. I was reluctant but basically said, "Talk with her on the phone and we'll discuss it." Within a few days, I received an email from my husband telling me the room was rented and he had taken the ad down. I immediately called him and told him "No way." Had he even talked with this woman? "No." He didn't have a last name or phone number for her. He sent me the string of emails from their communicaiton. I about choked when I read them. It was very obvious that if this was really a woman then she was severely mentally ill or it was a scam.
I tried to explain to my husband why we could not rent to this person. He could not understand it. This (supposed) woman, who could barely write English, stated she was under the care of her uncle. She offered to go to a coffee shop or a bar or do anything spontaneous with my husband if he wanted. He didn't even remember that part of the email. So we just argued over the phone and he thought I was just being judgmental of this poor woman. I immediately headed home. When I got home, I read the entire string of emails. I was even more shocked with my husband's childish respones and agreement to accept her cashier's check and deposit it immediately into our account while he waited for her car and belongings to be "shipped over" from just a few states away. (The cashier's check was actually being sent by Fed Ex, which we could track online.) I was actually embarrassed by his email to her about how wonderful she sounded and how she would fit so well into our little family.
I told him if she were a real person, she was absolutely NOT moving in with us. But I was quite sure it was a total scam and was horrified to read that he had actually sent this unknown person our complete names and address with complete instructions on how to find us. At that point I took over. I emailed the person told "it"the room was not available and that if the cashier's check arrived, I would return it. This person quickly and rudely responded with he would only accept the money back by Western Union or he would believe we were scamming him. My husband finally believed me. I wrote this person back and basically said, "If the envelope actually gets to us, I am sure the cops or a federal agency would love to get your cashiers check." We put a note on our door for Fed Ex stating that would we sign for NO packages. Fortunately, that was the end of that. The room is rented to a man who works with the other men. I am pleased with the temporary arrangement.
Over the past few months we have continued to have problems with my husband forgetting things but telling me that he did whatever I asked. I of course find out the truth and then can't figure out if he really thinks he did what I asked, or if he is just fibbing to me to get me off his back. Boy, this gets frustrating.
So back to the doctor we went again. This time I decided I had to deal with things differently. Usually I go and am obviously a basket case, crying and all. This time, I got dressed up like a professional geratric care manager and tried to pretend he was my client and not my husband. I think I did a bit better.
The doctor is ordering the neuro-psych tests to be done over again. It has been about 8 months since they were done last time. He will also be referred to a neuro psychiatrist or geriatric psychiatrist. I realize that I am really his only advocate at this point. So for my own sanity, I either get a divorce and just totally leave, or I take charge and learn to be persistant with the doctors in a sane and less emotional way.
I have consulted with a professional geriatric care manager who's specialty is Alzheimer's, and she has assured me that it is very normal for the spouse to have a very difficult time when dealing with issues such as these.
I believe that when he gets diagnosed properly and I get the proper help and advice for myself, perhaps I will learn how to better manage things and not feel like I stink so bad at it.
I plan to write often describing this journey.
As I acquire readers to this blog, I hope to hear from you often as well.
Emma James
Husband with Early Alzheimer's
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