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
Wednesday, January 6, 2010
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
Wednesday, June 3, 2009
Pseudo-Dementia caused by depression
While at this point the tests show that my husband's illness is pseudo-dementia caused by depression and is treatable, life is still very frustrating. After being on the anti-depressants for over a month now, I can see some improvements in some things, but still much needed improvement in other things. He now remembers how to do computer things that he had forgotten, but he still forgets some very important conversations. The problem still is that he forgets that he may forget.
I still have to be in charge of his medication because he forgets to take them at least half of the time. Tonight before going to bed (he was already in bed), I checked to see if he had taken his meds. He had not. I woke him up to take his meds. He insisted that he had already taken them and didn't believe me that he had forgotten. I insisted he come to the kitchen so he could look for himself. I had the packets labeled with dates so I would know if he missed any. When he saw that he had NOT taken Tuesday's meds, he insisted it was Monday. "No today was not Monday; it was Tuesday. So half asleep, he just took what I gave him.
While I am very relieved that he does not, according to the doctor's, have early onset Alzheimer's, pseudo-dementia caused by depression is still very frustrating. I cannot count on him getting things straight from the doctor or our attorney. And when he promises that he will tell them to communicate with me because he might forget things, I can't count on that he will remember to tell them that. So I still must go to all doctor's appointments and communicate with attorneys on issues. It frustrates me that he insists that he will remember to tell them that he might forget what they say, so to communicate with me.
It was recommended to him to get counseling on his own to help deal with this. The problem is, because of lack of emotions, he doesn't see the problems. I wrote notes in a spiral notebook for him to take to the therapist, so he will remember to tell her certain things, like if I need to know something, he will probably forget to tell me.
The doctor that gave him the neuropsych tests called and told us that if things do not improve down the road, he can get retested several months from now. We now have the first tests to compare to. While that is really good, somehow I just wasn't comforted enough to take away the worry.
I still have to be in charge of his medication because he forgets to take them at least half of the time. Tonight before going to bed (he was already in bed), I checked to see if he had taken his meds. He had not. I woke him up to take his meds. He insisted that he had already taken them and didn't believe me that he had forgotten. I insisted he come to the kitchen so he could look for himself. I had the packets labeled with dates so I would know if he missed any. When he saw that he had NOT taken Tuesday's meds, he insisted it was Monday. "No today was not Monday; it was Tuesday. So half asleep, he just took what I gave him.
While I am very relieved that he does not, according to the doctor's, have early onset Alzheimer's, pseudo-dementia caused by depression is still very frustrating. I cannot count on him getting things straight from the doctor or our attorney. And when he promises that he will tell them to communicate with me because he might forget things, I can't count on that he will remember to tell them that. So I still must go to all doctor's appointments and communicate with attorneys on issues. It frustrates me that he insists that he will remember to tell them that he might forget what they say, so to communicate with me.
It was recommended to him to get counseling on his own to help deal with this. The problem is, because of lack of emotions, he doesn't see the problems. I wrote notes in a spiral notebook for him to take to the therapist, so he will remember to tell her certain things, like if I need to know something, he will probably forget to tell me.
The doctor that gave him the neuropsych tests called and told us that if things do not improve down the road, he can get retested several months from now. We now have the first tests to compare to. While that is really good, somehow I just wasn't comforted enough to take away the worry.
Monday, May 11, 2009
Other Illnesses that Mimic Alzheimer's
The past couple of months have been enormously stressful. Finally, my husband completed all of the neuropsychiatric tests and blood work. The results? Actually, we were told that he didn't have Alzheimer's after all. He has pseudo-dementia caused by depression. My husband's response? I don't feel depressed. The doctor convinced him to give the anti-depressants a try.
I was very elated that we are not dealing with Alzheimer's. Yet while there is a huge weight lifted from me, my heart is still heavy. Will the medicine work to help him get back to normal? He has only been on the meds for a bit over a week, so it's too early to tell. So of course he still forgets things, will have an unexpected short temper toward a child, and still make manage to mess up our finances. So at this moment, I'm not feeling enormously relieved. Yes, relieved that I don't have to start planning for long-term care for him in the next few years, but still wishing he had never met me. He was a happy go lucky type of guy (I am told) before my children, grandchildren, and myself came into his nice quiet bachelor lifestyle. It is no wonder he is depressed. So I feel it is all my fault. I just want him to be happy. So I find myself planning on how I can financially get on my feet better so he can leave me and get back to the happy person he was.
I know I'm blabbing, but I will probably discontinue this new Blog soon, since the problems we face are not what I thought, but still very difficult. I'm still praying a lot pleading with Christ to direct my path.
I was very elated that we are not dealing with Alzheimer's. Yet while there is a huge weight lifted from me, my heart is still heavy. Will the medicine work to help him get back to normal? He has only been on the meds for a bit over a week, so it's too early to tell. So of course he still forgets things, will have an unexpected short temper toward a child, and still make manage to mess up our finances. So at this moment, I'm not feeling enormously relieved. Yes, relieved that I don't have to start planning for long-term care for him in the next few years, but still wishing he had never met me. He was a happy go lucky type of guy (I am told) before my children, grandchildren, and myself came into his nice quiet bachelor lifestyle. It is no wonder he is depressed. So I feel it is all my fault. I just want him to be happy. So I find myself planning on how I can financially get on my feet better so he can leave me and get back to the happy person he was.
I know I'm blabbing, but I will probably discontinue this new Blog soon, since the problems we face are not what I thought, but still very difficult. I'm still praying a lot pleading with Christ to direct my path.
Sunday, April 26, 2009
When inappropriateness happens
My grown daughters have complained at times because they thought my husband seemed to be inappropriate with them in the past by things he said to them. This was a couple of years ago. If I believed them at all I just tried to explain that he didn't mean things the way they took it. It has caused hurt feelings between some of my daughters and me because of this.
Yesterday my husband was telling me about the time years ago when he and his first wife and their young son went to see his father who had early onset Alzheimer's disease. His father looked at the child and couldn't remember his name and merely said, "Oh you brought the kids with you." Then at that point, he saw my husband's wife (who he really did know) and went towards her as if he was coming on to her. My husband could spot right away what was happening and merely steeped in and said, "Dad, this is my wife." His dad hesitated and finally realized and remembered his wife. The wife was very put off. She didn't understand how he could act so out of character.
When my husband told me this story, which he had told me before, I said to him, "Now, can you understand why my daughters were put off when you said things to them that could be taken as "coming on to them?" He thought about it a bit, and finally realized that yes he could see how that could happened. And even finally admitted that perhaps he had behaved poorly. I expect he will forget that he could see how he contributed to their put off feelings and will go back to blaming them for being so ridiculous and over-reacting.
I explained my husband's story about his own dad to one of my grown daughter's who he had offended and she finally said, "Well, that does explain why he would act out of character." I think she was relieved to know I really did believe her. I was just trying so long to support my husband and I of course had no idea what was going on with him. I knew in his right thinking he would never say something as inappropriate as he had said.
He has become more moody lately. He was always the rock and I was the moody one, so this is difficult. Today while I was trying to talk with him, he said, "You hate me don't you?" I thought what a horrible thing to say. I assured him that I did not hate him. I told him that I do not feel hate for anyone. He of all people should know that. But I was frustrated and he interpreted that as me hating him. I asked him if he could remember to please NEVER accuse me of hating him. I may be hurting, but I am not hating anyone.
Yesterday my husband was telling me about the time years ago when he and his first wife and their young son went to see his father who had early onset Alzheimer's disease. His father looked at the child and couldn't remember his name and merely said, "Oh you brought the kids with you." Then at that point, he saw my husband's wife (who he really did know) and went towards her as if he was coming on to her. My husband could spot right away what was happening and merely steeped in and said, "Dad, this is my wife." His dad hesitated and finally realized and remembered his wife. The wife was very put off. She didn't understand how he could act so out of character.
When my husband told me this story, which he had told me before, I said to him, "Now, can you understand why my daughters were put off when you said things to them that could be taken as "coming on to them?" He thought about it a bit, and finally realized that yes he could see how that could happened. And even finally admitted that perhaps he had behaved poorly. I expect he will forget that he could see how he contributed to their put off feelings and will go back to blaming them for being so ridiculous and over-reacting.
I explained my husband's story about his own dad to one of my grown daughter's who he had offended and she finally said, "Well, that does explain why he would act out of character." I think she was relieved to know I really did believe her. I was just trying so long to support my husband and I of course had no idea what was going on with him. I knew in his right thinking he would never say something as inappropriate as he had said.
He has become more moody lately. He was always the rock and I was the moody one, so this is difficult. Today while I was trying to talk with him, he said, "You hate me don't you?" I thought what a horrible thing to say. I assured him that I did not hate him. I told him that I do not feel hate for anyone. He of all people should know that. But I was frustrated and he interpreted that as me hating him. I asked him if he could remember to please NEVER accuse me of hating him. I may be hurting, but I am not hating anyone.
Sunday, April 19, 2009
Watching my intelligent husband forget things makes me cry
Tonight I am crying a lot. My little dog is even concerned about me. She comes up to me and wines and puts her paws on my lap and wants to lick my hands to make me feel better. She, of course, doesn't understand why I am crying but seems to understand that I am in pain. It concerns her to the point that she won't leave my side.
At what point will I have to explain to everyone what is going on? Now I understand why sometimes I have felt like I was dealing with a 5 year old in a man's body. My husband is so intelligent and sometimes so high functioning and then other times can't make a decision about anything, and I have to give instructions on everything. The latter is becoming much more often.
I seem to always be caught unprepared. Today we were out mowing the lawn together. I use the push power and he uses the riding mower. He would ask me where he should mow and I would show him. He then asked me if he had ever told me that once he owned 24 acres in the next county. I wasn't feeling very nice and said, "Yes, about 100 times. You have even showed it to me." Then I felt bad for the way I said it. But I don't even think he even knew I was being rude.
Sometimes our conversations seem so normal and other times I feel like I am trying to reason with a 3 year old. And I am very worried how this is all going to affect the grandchildren we are raising. When I think about how frustrated they already get at times and that it is going to get much worse, I just cry. They do not know there is something wrong with him. And because they are still young, they will never know him as being normal when they are older. When I think about that, I cry more. Then I think about him forgetting them, I cry even harder. I sob for the children.
We have a video camera, but my husband has forgotten how to make the DVD's from it, and I never knew how. I need to learn. I need to take a lot of video's of the children with him, so they can remember him in a happy way. But I must learn how to make the DVD's. Why does it scare me so? It is very overwhelming. I am quite an intelligent person, so I don't know why I am so afraid of all of the things I do not know how to do. He loved all of the electronic gadgets and I didn't. Sure I like taking digital pictures and I know how to crop them, upload them, download them etc., but making DVD's with the video camera is more complicated then the old video cameras of days gone by where you just taped right onto the VHS and then put it in your video player and watched it.
Everything seems to scare me right now, so I just cry and pray for strength and a way to make more money to make up for what we will lose when he leaves his job on disability. I have ideas, but I can't accomplish them if I cry all of the time.
At what point will I have to explain to everyone what is going on? Now I understand why sometimes I have felt like I was dealing with a 5 year old in a man's body. My husband is so intelligent and sometimes so high functioning and then other times can't make a decision about anything, and I have to give instructions on everything. The latter is becoming much more often.
I seem to always be caught unprepared. Today we were out mowing the lawn together. I use the push power and he uses the riding mower. He would ask me where he should mow and I would show him. He then asked me if he had ever told me that once he owned 24 acres in the next county. I wasn't feeling very nice and said, "Yes, about 100 times. You have even showed it to me." Then I felt bad for the way I said it. But I don't even think he even knew I was being rude.
Sometimes our conversations seem so normal and other times I feel like I am trying to reason with a 3 year old. And I am very worried how this is all going to affect the grandchildren we are raising. When I think about how frustrated they already get at times and that it is going to get much worse, I just cry. They do not know there is something wrong with him. And because they are still young, they will never know him as being normal when they are older. When I think about that, I cry more. Then I think about him forgetting them, I cry even harder. I sob for the children.
We have a video camera, but my husband has forgotten how to make the DVD's from it, and I never knew how. I need to learn. I need to take a lot of video's of the children with him, so they can remember him in a happy way. But I must learn how to make the DVD's. Why does it scare me so? It is very overwhelming. I am quite an intelligent person, so I don't know why I am so afraid of all of the things I do not know how to do. He loved all of the electronic gadgets and I didn't. Sure I like taking digital pictures and I know how to crop them, upload them, download them etc., but making DVD's with the video camera is more complicated then the old video cameras of days gone by where you just taped right onto the VHS and then put it in your video player and watched it.
Everything seems to scare me right now, so I just cry and pray for strength and a way to make more money to make up for what we will lose when he leaves his job on disability. I have ideas, but I can't accomplish them if I cry all of the time.
Monday, April 13, 2009
Today's Journey
We are on vacation right now. So far everything is going fine. However, I feel sick inside. I am so scared of what lies ahead that I do not understand. And I still can't tell the difference sometimes when my husband's behavior is part of the disease or just a personality quirk. We've only been married seven years, and I believe the beginnings of this dreaded disease started long before I actually started sending him to the doctor (I didn't go along) 3 years ago with my complaints of his memory and changes in personality.
I feel like I have him under a microscope, examining everything. I feel really sad about this, but I am trying to figure out just what he does and does not remember about things. I also know after he has been on the medicine for a month, I am gong to be asked if I see a difference. It seems the more I talk to him about the past several years, the more confused I become. What his family tells me about the way he was years ago is something I have never even seen. Changes are so subtle, that I really do not know when a decline started.
He still is quite high functioning when compared with where he is headed. He still works, just at a lower level, he can play games with the kids, and he still drives. However, his driving scares me. I know that he does not do well trying to focus on more than one thing at a time. It seems to be something that he just cannot do. So when he is driving and is looking at the scenery along the road rather than the road, I keep reminding him to keep his eyes on the road. But after a short time, he will ask me about something that is way off the road. I will look up from my book to see him looking way off to the left or right at something, wondering what it is. I then fuss at him and tell him to keep his eyes on the road. He has always done most of the driving when we go places and I am use to taking a book or two or three along to read while I ride. I can see it will be soon when I will be doing the driving. I keep expecting him to remember that he doesn't focus well on more than one thing at a time and that he will stop site seeing while he drives.
This is very confusing and I still want to believe that I am just blowing things out of proportions. But when he forgot that he had been on cholesterol medication and insisted that he only took it for one month last summer and the doctor looked in his chart and saw something very different, then I realize I am not making this up. I was glad that the doctor could talk to him personally and he could tell the doctor that he didn't remember being on cholesterol medication. The doctor then told my husband that he was first put on it in 2001 (before we even met). My husband's reply, "Really?"
When we get home from vacation, I am going to the pharmacy and get a record of medications he has been on for cholesterol and high blood pressure, so I can tell how often he really took it. I remembered him being on it, but he didn't. I did not think I needed to keep track of his medication. I had grandchildren to raise and worry about, and he seemed very capable of taking care of himself.
Now, I monitor all medication and my heart aches, because sometimes he seems so normal and other times he does not. I feel so alone and frightened. That statement is an understatement. I don't really even know how to describe my real feelings.
I feel like I have him under a microscope, examining everything. I feel really sad about this, but I am trying to figure out just what he does and does not remember about things. I also know after he has been on the medicine for a month, I am gong to be asked if I see a difference. It seems the more I talk to him about the past several years, the more confused I become. What his family tells me about the way he was years ago is something I have never even seen. Changes are so subtle, that I really do not know when a decline started.
He still is quite high functioning when compared with where he is headed. He still works, just at a lower level, he can play games with the kids, and he still drives. However, his driving scares me. I know that he does not do well trying to focus on more than one thing at a time. It seems to be something that he just cannot do. So when he is driving and is looking at the scenery along the road rather than the road, I keep reminding him to keep his eyes on the road. But after a short time, he will ask me about something that is way off the road. I will look up from my book to see him looking way off to the left or right at something, wondering what it is. I then fuss at him and tell him to keep his eyes on the road. He has always done most of the driving when we go places and I am use to taking a book or two or three along to read while I ride. I can see it will be soon when I will be doing the driving. I keep expecting him to remember that he doesn't focus well on more than one thing at a time and that he will stop site seeing while he drives.
This is very confusing and I still want to believe that I am just blowing things out of proportions. But when he forgot that he had been on cholesterol medication and insisted that he only took it for one month last summer and the doctor looked in his chart and saw something very different, then I realize I am not making this up. I was glad that the doctor could talk to him personally and he could tell the doctor that he didn't remember being on cholesterol medication. The doctor then told my husband that he was first put on it in 2001 (before we even met). My husband's reply, "Really?"
When we get home from vacation, I am going to the pharmacy and get a record of medications he has been on for cholesterol and high blood pressure, so I can tell how often he really took it. I remembered him being on it, but he didn't. I did not think I needed to keep track of his medication. I had grandchildren to raise and worry about, and he seemed very capable of taking care of himself.
Now, I monitor all medication and my heart aches, because sometimes he seems so normal and other times he does not. I feel so alone and frightened. That statement is an understatement. I don't really even know how to describe my real feelings.
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